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... Relating Anthocyanidin Synthase Gene Expression to Floral Color Change in Saponaria officinalis By Kamryn Foy Honors Project Thesis Submitted in Partial Fulfillment Of the Requirements for a Baccalaureate Degree With Distinction In the Ron and Laura Strain Honors College of THE UNIVERSITY OF INDIANAPOLIS December 2, 2019 Faculty Advisor: Sandra L. Davis, Ph.D. Executive Director of Honors: James B. Williams, Ph.D. Kamryn Foy 2019. Copyright in this work rests solely with the author. Please ensure that any reproduction or re-use is done in accordance with relevant national copyright protection. ii Abstract Saponaria officinalis is a protandrous common weed that is pollinated primarily by moths. In the male stage, the flower will be white, while in the female stage the flower will be pink. This color change is due to the accumulation of anthocyanins, a common flavonoid, in the petals. These pigments are produced via a biochemical pathway the steps of which are catalyzed by enzymes including anthocyanidin synthase (ANS). The goal of this research was to determine if the change in flower color is accompanied by an increase in expression of the ANS gene. One flower from 5 different developmental stages was collected from 10 different plants and their color quantitated by measuring light reflectance. RNA from the petals of each flower was then isolated and ANS expression was measured by using qPCR. We found that flower color did significantly increase from male to female phase flowers. Expression of the ANS gene was also significantly higher in female phase flowers. Therefore, the transition to pink in female flowers does seem to correspond to an increase in ANS expression. iii Table of Contents Abstract ii Table of Contents iii Acknowledgements iv List of Tables v List of Figures vi Introduction 1 Background 5 Method/Procedure 6 Results 9 Analysis/Conclusion 12 Reflection 14 References/Bibliography 15 Appendices 17 iv Acknowledgements I would like to thank the Strain Honors College for helping with the development of my proposal, providing the funding for this project, and for their support. The biology department of the University of Indianapolis for the use of their facilities and resources. Dr. Davis for being a wonderful mentor. As well as DePauw University collaborators and the previous students who have worked on S. officinalis. v List of Tables Table 1: One-way ANOVA to determine if there is a significant difference in PI 9 Table 2: Post-HOC tests indicating which floral stages are different from each other 9 Table 3: Two-way ANOVA to determine if ANS expression is significantly different between floral stage and plant number (bud stage not included) 10 Table 4: Two-way ANOVA to determine if ANS expression is significantly different between floral stage and plant number (bud stage included) 10 vi List of Figures Figure 1: Anthocyanin biosynthetic pathway including enzymes 2 Figure 2: Reflection spectrum of white and pink flowers 6 Figure 3: Pinkness index equation 6 Figure 4: 48-well RT-qPCR plate set-up 7 Figure 5: Pinkness over floral lifespan 9 Figure 6: Outlier test 10 Figure 7: Pooled data for plants of each stage only looking at the effect of stage 11 Figure 8: Pooled data for male and female stage plants 11 1 Introduction Saponaria officinalis, commonly known as bouncing bet, is a common weed found throughout the continental United States, Canada, and Europe. It is a short-lived perennial that is classified within the Caryophyllaceae family (Jabbari et al., 2011). A unique attribute of bouncing bet is its color-changing flowers which are also protandrous. Protandry is a form of dichogamy, in which the stigma does not become receptive before the stamens have released their pollen (Davis et al., 2014). In the bud and male stages of the flower, the petals of each flower are white in color; however, as they transition from male to female, the flower turns pink. Protandry is significant to the fertilization process for Saponaria officinalis as it inhibits self-fertilization within flowers by separating the maturation of male and female reproductive units in time. This makes pollination by insects crucial for the successful reproduction of the plant. When insects transport pollen from a male-phase flower on one plant to a female-phase flower on another plant, this results in cross-fertilization. Cross-fertilization is thought to be evolutionarily beneficial as it increases the genetic diversity among the resulting offspring (Lloyd & Schoen, 1992). Furthermore, color change in flowers is found in many plant species and is thought to direct pollinators to reproductively receptive flowers and increase pollination efficiency (Weiss, 1995). Previous research on S. officinalis has shown that insects will preferentially visit the white male-phase flowers compared to the pink female-phase flowers (Jabbari et al., 2011). The pollinators may be using white color to distinguish more rewarding flowers as some pollinators collect pollen and there is some evidence that the earlier stage flowers produce slightly more nectar than later stage flowers (Davis et al., 2014). Directing pollinators to male-phase flowers may be beneficial to the plant, as additional visits to flowers 2 in male stage will increase pollen dispersal and therefore the number of seeds sired; however, increased visits to flowers in the female stage will not necessarily increase the number of seeds set because a flower may only need one or two visits to receive enough pollen that all the eggs within the ovary can be fertilized (Arnold, 1994). Therefore, the coordination of timing between the transition from male to female and color change from white to pink may be an important factor determining reproductive fitness in S. officinalis. The pigments responsible for the pink coloration of the petals in S. officinalis are anthocyanins. Anthocyanins are red, blue, and purple plant pigments, classified as flavonoids, and can be found in many common plants (Winkel-Shirley, 2001). The higher the concentration of anthocyanins present, the more color that is expressed in the flower. Anthocyanins are produced via the biochemical pathway shown in Figure 1. Each step within the pathway is controlled by an enzyme; for example, flavonols are expressed when Dihydroflavonol 4Reductase enzyme (DFR) is produced, while the final step in anthocyanin production is 3 regulated by the enzyme anthocyanidin synthase (ANS). The production of each of these enzymes is controlled by genes. For example, the ANS enzyme is coded for by the ANS gene; therefore, increased or decreased expression of the ANS gene can then control how much pigment is produced. Problem This project is part of a larger research question that is trying to address if floral color change is potentially an adaptive trait in S. officinalis. Pollination by insects has been a major evolutionary pressure in flowering plants as it directly influences the reproductive success of an individual plant. It is theorized that plants have evolved through natural selection to attract pollinators through a variety of methods, including the use of the color of flower petals, the size of the flower, and the timing of which the sexual organs are displayed (Jabbari et al., 2011). On the other side, pollinators have been selected to find rewarding flowers that make themselves more productive while foraging. Since most pollinators make visually oriented selections, selection will favor those individual plants that have floral colors that are most attractive to their pollinators (Weis, 1995). For a trait to evolve through natural selection, the trait must be heritable. Although the production of the enzymes involved in the anthocyanidin synthesis pathway are controlled by genes that are heritable, the timing and level of expression of these genes will also affect whether or not the color change affects pollinator behavior in a manner that increases the fitness of an individual plant. For example, if color change is being regulated by the enzymes later in the pathway, such as ANS, depicted in Figure 1, we would expect expression of the earlier genes to remain constant across floral stages. In this manner, 4 these enzymes would be advancing the production of anthocyanidins to a later stage in the pathway that could be quickly converted to the pink pigmentation with the activation of the later acting ANS gene. On the other hand, if the production of the enzymes and pigment precursors are metabolically costly, we might predict that the expression of genes earlier in the pathway would not increase unless one of the environmental factors shown to cause an increase in pigmentation (sun exposure, pollination, etc.) is present. This project studied the expression of the ANS gene throughout the various stages of development, as Saponaria officinalis changes from male to female, using real-time quantitative polymerase chain reaction (RT-qPCR). It was hypothesized that if the ANS gene is involved in the regulation of floral color change, then there should be an increase in the level of ANS expression during flower development. 5 Background For this project, I worked under the supervision of Dr. Davis. During semester II of the 2018-2019 academic year, I learned and familiarized myself with the process of real-time quantitative polymerase chain reaction (RT-qPCR). In the traditional process of PCR, a gene to be amplified is chosen, in this case the ANS gene, and copies are made in an exponential pattern (Lu et al., 2009). After each cycle, the quantity of the gene is doubled, thus when starting with one copy, after 10 cycles there will be 1024 copies, after 20 cycles there will be 1.048*106 copies, and after 40 cycles, which is the typical number of cycles, there will be 1.099*1012 copies of the gene. However, around 30 cycles, supplies for the replications will begin to dwindle, resulting in a leveling-off effect and a plateau so that the number of copies will reach a maximum. Traditional PCR only detects the amplified gene at the end of the process. In RT-qPCR, the number of copies of the amplified gene is measured and tracked as the reaction progresses throughout each cycle (Smith et al., 2012). This can be seen using a fluorescent reporter molecule, which will become more intense as the amount of DNA increases. RT-qPCR can be used to measure the amount of starting DNA in a sample, as the greater the number of starting copies of a gene, the fewer cycles of PCR it will take to reach the plateau stage. The central dogma of genetics begins with DNA going through the process of transcription to create RNA, which then goes through translation to become a protein. Genes are expressed by transcription of mRNA from DNA; therefore, the more mRNA copies of a gene present, the more active or turned on a gene is. RT-qPCR was used to measure the amount of ANS mRNA present in the S. officinalis samples. 6 Method/Procedure The samples used in this study were taken from S. officinalis plants grown in an experimental garden and studied by Dr. Davis in July of 2015 at the DePauw University Nature Park in Greencastle, Indiana. To measure floral color during the gender transition, 6 flowers on 11 different plants of S. officinalis were tagged and collected at 6 different developmental stages: bud, early male, late male, early female, mid female, and late female, for a total of 65 flowers. The color of each flower was measured using an Ocean Optics Reflectance Spectrometer with a UV-VIS light source (200 800 nm) and fiber optic reflectance probe. Reflectance versus wavelength was plotted to generate a reflectance spectrum (Figure 2), in order to calculate a pinkness index (PI) (Figure 3). To measure ANS expression across stages, 5 flowers on 10 different plants growing in the same experimental garden as above were tagged and collected at five different developmental stages: bud, early male, late male, early female, and late female, for a total of 50 flowers. As the experimental garden was directly adjacent to the Manning field lab of the Nature Park, we were able to flash freeze the petals of each flower in liquid nitrogen and process them directly upon collection. RNA was then isolated from the petals of the flowers 7 using guanidinium-phenol-chloroform extraction (i.e., TriReagent), labeled and stored in 500mL Trizol within a -80oC non-frost-free freezer. In order for samples to be put through RT-qPCR, the RNA samples were then converted into complementary DNA (cDNA). This was done through the process of reverse transcription with the enzyme reverse transcriptase (Keyser et al., 2013). Once the cDNA was obtained, the samples were again stored at -80oC until I used them for RT-qPCR to measure the expression of the ANS gene within the sample. cDNA samples were analyzed with Eco Real-Time PCR System by Illumina. This system uses 48-well plates, to allow for 48 reactions to be run simultaneously. For each cDNA sample, 3 replicate PCR reactions were run using primers specific to the ANS gene and 3 replicate PCR reactions were run using primers specific to the Actin gene (ACT). Actin is a protein that makes up the cytoskeleton of cells and is therefore expected to be expressed by all cells at roughly the same level, so it is used to obtain a base-line value to which to compare the ANS levels. A typical 48-well plate was used and set-up as shown in Figure 4. Each of the 48 wells was loaded with 6 L of a master mix containing iQ SYBR Green Supermix, which contains the reporter molecule and PCR reagents and either 10M ANS primers or 10M ACT primers. Column 1 of each plate was the no template control, containing only primer mixture and 6 L of nuclease-free water. Columns 2 and 3 were a 8 serial dilution, starting with 2 L of original sample cDNA added to 18 L of nuclease-free water (a 1:10 dilution), and serially diluted to the amounts shown in the figure. Columns 4 through 8 were loaded with 6 L of 1:10 diluted cDNA samples. The plate was then sealed and placed in the Illumina machine and ran for 40 cycles of PCR that consisted of 60 seconds at 95oC, 60 seconds at 54oC, and 120 seconds at 72oC. The difference between average CT value of the 3 replicates for each sample using ANS and using ACT primers was then determined (the delta value). The largest of these delta values (3.22) was then subtracted from each of these delta values, creating the Delta Delta value. The delta delta value was then converted into a log value to calculate the ratio of ANS:ACT expression by the formula 2-DD. The results were then examined to determine if there was an association between the ANS gene expression and the color change of the flower. 9 Results Pinkness Index of Floral Stages All data were analyzed with IBM SPSS version 25 software. For flower color, a one-way ANOVA (Table 1) found a significant difference in pinkness index across floral stages. A pairwise Tukey postHOC test was run to determine which of the stages were different from each other. This corresponds to the graph in Figure 5 and the letters differentiate between the stages that are significantly different from each other. The bud stage (A) is significantly different from all the female stages; however, early and late staminate stages (AB) are not significantly different from the bud stage or the early pistillate (B) but is significantly different from mid and late pistillate stages (C). The early pistillate stage (B) is 10 significantly different from bud (A) and mid and late pistillate stages (C). The mid and late pistillate stages (C) are significantly different from all other stages. ANS Expression in Different Floral Stages Three outliers were found, as shown in Figure 6, and removed from the data before analysis. To determine if there was a significant difference in ANS gene expression between floral stages and plant number, a two-way ANOVA was run with floral stage considered a fixed dependent variable and plant number as a random dependent variable. Table 3 shows the results without the bud stage included in the calculations; however, Table 4 does include the bud stage. The bud stage is not male or female so the results were separated. As seen in both tables, there is no significant difference when looking at both flower number and flower stage together. Since there was no significant interaction between floral 11 stage and plant number, the data were pooled across plants for each stage and just the effect of stage was analyzed; however, there was still no significant difference in ANS expression between floral stages (Figure 7) (P value 0.162), although the trend for higher expression was what we predicted. This may be due to low sample size, since we only analyzed 10 flowers per stage. Therefore, the data were pooled between male and female stages. When comparing just male vs. female stage, Figure 8 shows that male stage flowers had significantly less ANS expression than female stage flowers (P value 0.014). 12 Analysis/Conclusion The hypothesis, if color change is being regulated by ANS gene in the anthocyanin biosynthetic pathway, then there should be an increase in the level of ANS expression as S. officinalis proceeds through its floral stages and transitions from white to pink, was supported. S. officinalis flowers do significantly increase in pinkness from early male to late female stages. Despite no significant difference being found in ANS expression between the individual floral stages, there was a significant difference in ANS expression between malephase and female-phase flowers. Since only 10 flowers per floral stage were sampled in this study, increasing the sample size could allow us to detect differences between the individual stages to help narrow down the timing of when the increase in ANS gene expression occurs. Furthermore, these data suggest that increased expression of the ANS gene is directly associated with the increasing amount of anthocyanins in S. officinalis flowers. Regulating color expression via the ANS gene, which has a late role in the anthocyanin biosynthetic pathway, may have significant implications. Similar to this study, Farzad et al. (2003) found that, during flower development in color changing violets, ANS expression increased as the flower changed from white to a purple color; but, CHS and DFR, which act earlier in the pathway (Figure 1), expression stayed the same. However, there was an increase in expression in CHS, DFR, and ANS in response to increased light and pollination. This suggests ANS is regulating color change during ontogeny, but all three are involved in generating a response to environment. Pollination and exposure to light have also been shown to trigger floral color change in other species (Woltering et al., 1995). Both of these factors could also be contributing to floral color change in S. officinalis and the expression of DFR across floral 13 stages are currently being examined. The results of this experiment could contribute to establishing a correlation between flower gender, color, and pollinator attraction to a specific floral stage. If, as in violets (Farzad et al., 2003), genes that code for enzymes that act early in the production of anthocyanins are already being expressed in the bud and male stages, then the color transition from white to pink could occur rapidly with the activation of the ANS gene, which acts late in the pathway. Floral color change has evolved multiple times in angiosperms across many different taxa. It is thought to be an adaptation that influences pollinator behavior. The retaining of color changed flowers increases the overall display size of the inflorescence, thereby attracting a greater number of insect pollinators seeing the display from a distance. Once the pollinators have reached the inflorescence, the color difference may direct the pollinators to more rewarding flowers (Weiss, 1995). This could reduce the probability of selfpollination and increase pollen dispersal by increasing the number of initial visits to an inflorescence, but decreasing the number of flowers within an inflorescence an insect visits, transferring pollen from one flower to another of the same individual (geitonogamous pollination). In S. officinalis, floral color change has been shown to increase the probability of pollinator visits to male-phase white flowers over female-phase pink flowers (Davis et al., 2014). Therefore, floral color change in S. officinalis may be an adaptive trait that increases cross-pollination via pollinator signaling. 14 Reflection The goals of this project were met as I learned how to perform RT-qPCR, presented my findings to the Biology Department in an oral presentation in the format of a professional scientific talk, and was able to achieve statistically significant results. There were a few difficulties in this project. The first being time, as I am graduating in December so the actual research was done within one semester. A second complication was the amount of DNA I had available. The original samples I was supposed to work with were destroyed when the Biology Departments -80oC freezer malfunctioned. Luckily, there were replicates of the samples at DePauw University and I was able to use those; however, there were a few samples missing and the amount of cDNA left in some was just enough to do two RT-qPCR runs. This project was personally important to me because this is a major life milestone that I completed, one of which I have had planned for years, and it puts me one step closer to graduation. It was also professionally important to me as this is what I want to do in the future. I plan on attending graduate school for molecular biology, a program which is heavy on gene regulation, biosynthetic pathways, and lab research. This project was a great preparatory experience. I improved my analytical thinking skills through examining my data and interpreting how the data solves the addressed problem. I also boosted my skills in problem solving as there were a few trials with messy data and the issue had to be identified before those samples were run again to achieve accurate data. Furthermore, I had to be open-minded to taking critique throughout the entire process of this project since it is given to help evolve my skills needed for my future. 15 References Arnold, S. J. (1994). Batemans Principles and the Measurement of Sexual Selection in Plants and Animals. The American Naturalist, 144. Davis, S. L., Dudle, D. A., Nawrocki, J. R., Freestone, L. M., Konieczny, P., Tobin, M. B., & Britton, M. M. (2014). Correction: Sexual Dimorphism of Staminate- and Pistillate-Phase Flowers of Saponaria officinalis (Bouncing Bet) Affects Pollinator Behavior and Seed Set. PLoS ONE,9(4). Farzad, M., Griesbach, R., Hammond, J., Weiss, M. R., & Elmendorf, H. G. (2003). Differential expression of three key anthocyanin biosynthetic genes in a color-changing flower, Viola cornuta cv. Yesterday, Today and Tomorrow. Plant Science,165(6), 1333-1342. Jabbari, S. G., Davis, S. L., & Carter, E. J. (2011). Interaction between floral color change and gender transition in the protandrous weed Saponaria officinalis. Plant Species Biology,28(1), 21-30. Keyser, E. D., Desmet, L., Bockstaele, E. V., & Riek, J. D. (2013). How to perform RT-qPCR accurately in plant species? A case study on flower colour gene expression in an azalea (Rhododendron simsii hybrids) mapping population. BMC Molecular Biology,14(1), 13. Lloyd, D. G., & Schoen, D. J. (1992). Self- and Cross-Fertilization in Plants. I. Functional Dimensions. International Journal of Plant Sciences, 153(3, Part 1), 358369. Lu, Y., Du, J., Tang, J., Wang, F., Zhang, J., Huang, J., Wang, L. (2009). Environmental regulation of floral anthocyanin synthesis in Ipomoea purpurea. Molecular Ecology,18(18), 38573871. 16 Smith, S. D., Wang, S., & Rausher, M. D. (2012). Functional Evolution of an Anthocyanin Pathway Enzyme during a Flower Color Transition. Molecular Biology and Evolution,30(3), 602-612. Weiss, M. R. (1995). Floral Color Change: A Widespread Functional Convergence. American Journal of Botany,82(2), 167-185. Winkel-Shirley, B. (2001). Flavonoid Biosynthesis. A Colorful Model for Genetics, Biochemistry, Cell Biology, and Biotechnology. Plant Physiology,126(2), 485-493. Woltering, E. J., Somhorst, D., & Veer, P. V. D. (1995). The Role of Ethylene in Interorgan Signaling during Flower Senescence. Plant Physiology, 109(4), 12191225. doi: 10.1104/pp.109.4.1219 17 Appendix  ...

... Occupational Stress and Burnout in Pathologists Assistants Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Victoria Montoya, MS, MPS, PA(ASCP)CM Copyright 04/19/2023 By: Victoria Montoya, MS, MPS, PA(ASCP)CM All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ______________________________ Lisa Borrero, PhD, FAGHE Committee Member ______________________________ Barbara L. Watters, PhD Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS Occupational Stress and Burnout in Pathologists Assistants Victoria Montoya Department of Interprofessional Health and Aging Studies, University of Indianapolis 1 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 2 Abstract Background: The unique work environments and responsibilities of healthcare professionals put them at an increased risk of high levels of occupational stress, which can lead to burnout, characterized by exhaustion, detachment, and reduced accomplishment. Pathologists assistants are allied health professionals whose primary work is in the pathology laboratory, performing non-patient-facing duties. Much attention and research have focused on occupational stress and burnout in patient-facing healthcare professions, and little is known about occupational stress and burnout in pathologists assistants. Purpose: The purpose of this study was to explore the unique experiences of occupational stress and burnout in pathologists assistants, examining participants perceptions of contributing factors and stress management. Method: A qualitative study using a basic interpretive approach was conducted, in which 12 pathologists assistants were recruited to participate in one-on-one, semi-structured interviews via Zoom web conferencing. The data were analyzed through a review of transcripts, notes, and memos to identify overarching themes relating to the experiences of occupational stress and burnout. Results: Four main themes arose regarding occupational stress: workload, physical demands, interpersonal issues, and lack of respect/understanding. In relation to burnout, four additional themes emerged: physical impacts, emotional and interpersonal impacts, potential patient care impacts, and addressing burnout. Discussion and Conclusion: An understanding of the unique stressors and burnout factors for pathologists assistants will aid in identifying potential strategies for the prevention and management of these issues. Keywords: occupational stress, burnout, pathology, pathologists assistants OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 3 Acknowledgments I am extremely grateful to my committee for their support and feedback throughout the dissertation process. Dr. Laura Santurri, your advice and guidance have been invaluable. Ive always felt like I could accomplish anything with you in my corner. Dr. Lisa Borrero, working with you made me fall in love with the process and products of qualitative research. Your support has picked me up anytime I got a little down during this process. Dr. Barbara Watters, your revisions and suggestions were vital in pushing me to think more critically and inspired me to go beyond my comfort zone and create a product I can truly take pride in. I am so lucky you agreed to join my committee. My family has been phenomenal throughout this process. From being a sounding board for my ideas to handling all the things at home so I could focus, I could never thank you enough for all the love, support, and encouragement. Much gratitude also goes to my office dog, who has been by my side for two masters degrees and this doctoral enterprise, providing his own brand of unwavering support and inspiration. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 4 Table of Contents Title Page ..1 Abstract .2 Acknowledgements ...3 Chapter 1: Introduction .7 Problem Statement ....8 Purpose Statement 9 Research Questions ...9 Significance of the Study .....10 Definition of Terms .10 Chapter 2: Literature Review ..11 History of Occupational Stress Research .....12 Defining Occupational Stress ..13 History of Burnout Research ...13 Defining Burnout ....15 Occupational Stress and Burnout in Healthcare Professionals 16 Occupational Stress and Burnout in Pathology Professionals ......19 Chapter 3: Method ...26 Study Design ...26 Participants ..27 Procedures ...27 Sampling and Recruitment ..27 Informed Consent ....29 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 5 Data Collection 30 Data Management and Analysis ..31 Rigor/Trustworthiness .35 Chapter 4: Results ...36 Occupational Stress .37 Theme 1: Workload .....37 Theme 2: Physical Demands ...38 Theme 3: Interpersonal Issues .....40 Theme 4: Lack of Respect/Understanding ...41 Burnout ...42 Theme 1: Physical Impacts ..42 Theme 2: Emotional and Interpersonal Impacts ..44 Theme 3: Potential Patient Care Impacts .....45 Theme 4: Addressing Burnout .....45 Chapter 5: Discussion ......48 Occupational Stress ..48 Burnout ...52 Study Limitations ....57 Implications for Further Research ...57 Conclusion ..59 References ...60 Figure 1: Theme Map ..71 Appendix A: Recruitment Infographic 72 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 6 Appendix B: Interview Guide ..73 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 7 Occupational Stress and Burnout in Pathologists Assistants Occupational stress and burnout are significant issues faced by the global workforce, leading to a range of adverse outcomes both on the individual and organizational levels. Occupational stress describes the psychological and physiological response to workplace events or conditions that are detrimental to health and well-being (American Psychological Association [APA], 2021). Factors that influence occupational stress include autonomy, workload, responsibility level, job security, physical environment, the nature and pace of the work, and interpersonal relationships with coworkers and supervisors (APA, 2021). Efforts to understand the causes and effects of stress at work came to the forefront in the 1970s, with researchers identifying some common work-related stress concerns that span occupations (Quick & Henderson, 2016). Three of the leading causes of occupational stress identified in a review of the literature by Quick and Henderson (2016) are a lack of employee decision latitude, that is, high work demands coupled with low control; uncertainty, which includes job insecurity and role ambiguity; and poorly managed conflict at work. In addition, occupational stress is a known risk factor for a range of health issues, including medical problems like cardiovascular disease and musculoskeletal injury; behavioral issues such as tobacco, drug, or alcohol abuse; and psychological problems like anxiety, depression, and burnout (Quick & Henderson, 2016). Burnout is a significant form of psychological distress resulting from chronic occupational stress (Salvagioni et al., 2017). Over the past two decades, the conceptualization of burnout has been shaped, depicting the issue as a psychological syndrome stemming from the response to chronic occupational stressors (Maslach et al., 2001). In 2019, the World Health Organization (WHO) included burnout in the 11th Revision of the International Classification of OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 8 Diseases (ICD-11), recognizing it as an occupational phenomenon (WHO, 2019). In the ICD-11, the WHO included the three core dimensions of the burnout experience described in Maslachs (1982, 1998, 2001) multidimensional theory of burnout. The three key dimensions of burnout are overwhelming exhaustion, feeling detached and cynical toward ones job, and a sense of reduced professional efficacy or accomplishment (Maslach, 2001). Burnout research has its roots in caregiving and service occupations, uncovering common themes of emotional exhaustion, detachment, and cynicism as coping mechanisms, focusing on relationships as both a stressor and a stress management resource (Maslach, 2001). For healthcare professionals, many of the unique job-related demands, particularly with todays rapidly changing healthcare environment, lead to increased levels of stress which can result in an increased risk of burnout. More than 50% of nurses, physician assistants, and physicians report symptoms of burnout (Green et al., 2020). Burnout carries potential psychological and physical effects for each individual, including chronic fatigue, relationship conflicts, depression, and anxiety (Schrijver, 2016). At the organizational level, burnout can negatively impact healthcare professionals productivity, effectiveness, and engagement, resulting in diminished compassion in care and weakened job performance, directly impacting the quality of patient care provided (Green et al., 2020). Problem Statement Occupational stress and burnout in healthcare professionals are significant, growing issues with potential adverse impacts on the delivery of quality care. Healthcare professionals are regularly exposed to stressful environments and are more vulnerable to high degrees of stress and burnout (Bidlan & Sihag, 2013). Burnout is commonly seen in professions involving high levels of interaction with others, like most healthcare professions, but it can occur in any occupation OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 9 (De Hert, 2020). For example, most pathology professionals, including pathologists assistants, perform their duties in non-patient-facing roles but still face many of the demands and stresses experienced by healthcare professionals with direct patient contact, in addition to their own unique challenges. Pathologists assistants are highly trained allied health professionals trained to examine and evaluate surgical pathology specimens, perform postmortem examinations, and participate in educational and administrative tasks. Occupational stress and burnout in healthcare professionals are the topics of a large volume of current research; however, most research focuses on patient-facing professions. Purpose Statement The purpose of this study was to understand the experiences of occupational stress and professional burnout in pathologists assistants. Specifically, this study investigated participants perceptions of factors contributing to occupational stress and potential burnout in their field and characterized their feelings toward stress management and burnout prevention. Research Questions 1. How do pathologists assistants experience and manage occupational stress? a. What are their perceptions and feelings about stress management? b. What are their perceptions of job-related and situational factors that increase stress or impact how stress is managed? 2. How do pathologists assistants perceive and define professional burnout? a. What are their perceptions and feelings about professional burnout? b. What are their perceptions of job-related and situational factors that contribute to burnout? Significance of the Study OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 10 Identifying and understanding factors leading to increased occupational stress in healthcare professionals can provide valuable insight to inform future initiatives to promote effective stress management and prevent burnout. Stress and burnout are highly individualized experiences, and more targeted, specific information about those personal experiences can improve approaches to management and prevention. As acknowledged by Kroft (2020), very little is known about burnout within the specific community of pathology professionals and what interventions are likely to be successful in this unique field. Several recent studies have dedicated their attention to the pathology professions, establishing data on burnout prevalence and common contributing factors. Broad role diversity exists among pathology professionals, and the role of the pathologists assistant differs greatly from the roles of their pathology peers. This study has taken a qualitative approach, with an effort to identify and describe unique elements of the stress and burnout experience specific to pathologists assistants. This detailed, specific insight into personal experiences can be utilized to promote policies and initiatives that address current issues and better serve the specific needs of this population. Definition of Terms Burnout: a syndrome resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: feelings of energy depletion or exhaustion; mental detachment from ones job or feelings of negativism or cynicism related to one's job; and reduced professional efficacy or accomplishment (WHO, 2019). Occupational stress: a physiological and psychological response to events or conditions in the workplace that is detrimental to health and well-being. It is influenced by such factors as autonomy and independence, decision latitude, workload, level of OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 11 responsibility, job security, physical environment and safety, the nature and pace of work, and relationships with coworkers and supervisors (APA, 2021). Pathology professionals: individuals whose primary work is in the pathology laboratory setting, either as a physician (pathologist), physician trainee (pathology resident), advanced provider (pathologists assistant), or in another medical laboratory profession. Pathologists assistant: a highly trained allied health professional qualified to provide services in anatomic pathology under the direction and supervision of a board-certified anatomic pathologist. Duties include examining, evaluating, and dissecting surgical pathology specimens, performing postmortem examinations, and educational and management activities (American Association of Pathologists Assistants, n.d.). Literature Review In recent years, increased attention has been focused on occupational stress and burnout as significant issues for the global workforce, triggering a large volume of research to understand these phenomena further and develop ways to reduce their adverse effects. The psychophysiological phenomenon known as the stress response was first described in the early 20th century, with research identifying the biological processes in the bodys physical response to stress (Quick & Henderson, 2016). Subsequent research has included work to describe factors contributing to variations in the stress response among individuals, studies identifying some of the consequences of prolonged stress, and the exploration of interventions to manage and prevent stress (Quick & Henderson, 2016). The term occupational stress encompasses the stress response to workplace events or conditions, leading to adverse effects on an individuals health and wellbeing (American Psychological Association, 2021). Unmanaged, chronic occupational stress can OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 12 lead to various health issues, including mental health concerns like anxiety, depression, and burnout (Quick & Henderson, 2016). In the United States, the term burnout came into widespread use in the 1970s, with earlier writings in the fiction and nonfiction realms describing the phenomenon as a social problem (Maslach et al., 2001). As burnout research emerged, it was disparaged at first, viewed as nonscholarly pop psychology due to its nonacademic origins (Maslach et al., 2001). Over the years, empirical study into the phenomenon and the development of recognized theoretical models has led to an established conceptualization of job burnout as a psychological syndrome impacting many in the global workforce. History of Occupational Stress Research Occupational stress is one of the most researched topics in organizational psychology, characterized predominantly by research focused on the psychosocial aspects and causes of stress and research exploring the mental, physiological, and organizational impacts of stress (Cassar et al., 2020). Early work explaining the biological stress response paved the way for the emergence of behavioral and psychological models in the late 20th century. Cassar et al. (2020) described a shift from viewing stress as an external event to acknowledging the dynamic interplay between external events and internal balances, focusing on personal meanings, emotions, and perceptions. Much recent research has centered on linking occupational stress to health and organizational outcomes and examining the efficacy of stress management interventions (Cassar et al., 2020). Evidence has been found connecting occupational stress with cardiovascular disease, anxiety, depression, and increased levels of substance abuse (Quick & Henderson, 2016). Quick and Henderson (2016) emphasized that workplace stress reduction interventions OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 13 are a vital defense against the adverse effects of occupational stress and incorporate current trends in wellness and positive psychology. Defining Occupational Stress While work-related stress has become a well-known global issue, conceptualizing the phenomenon in the literature has caused some debate, leading to differences in how the construct is described (Cassar et al., 2020). Conceptual variations reflect the subjective nature of the stress experience and individual differences in defining stress and well-being. The American Psychological Association (2021) has defined occupational stress as a physiological and psychological response to events or conditions in the workplace that is detrimental to health and well-being influenced by factors like autonomy and independence, decision latitude, workload, responsibility level, job security, physical environment, the nature and pace of the work, and relationships with coworkers and supervisors (para. 1). One of the most severe and detrimental potential responses to occupational stress is burnout (Quick & Henderson, 2016). History of Burnout Research The initial phase of burnout research was defined by social science articles on burnout from Freudenberger (1974, 1975) and Maslach (1976), which were qualitative, encompassing interviews with direct accounts of job stress, coping strategies, and the feelings associated with the experience (Maslach et al., 2001). Freudenberger (1974) first used the term burnout to describe the experience of becoming exhausted from excessive demands on ones energy, strength, or resources in the workplace, and he identified numerous signs and symptoms, including exhaustion, fatigue, frequent headaches, gastrointestinal issues, frustration, anger, and depression (p. 159). Freudenberger (1974) acknowledged burnout as an issue at both the individual and organizational levels, recognizing that those highly dedicated and committed to OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 14 their work were more likely to experience burnout. Burnout occurs more frequently in occupational contexts that require empathy, personal involvement, and intrinsic motivation (Heinemann & Heinemann, 2017). In the late 1970s and early 1980s, Maslach and her colleagues shifted their approach and began to focus on the quantitative measurement of burnout. With the development of the Maslach Burnout Inventory (Maslach & Jackson, 1981), a new empirical phase in burnout research began (Maslach et al., 2001). The Maslach Burnout Inventory (MBI) is a 22-item instrument still considered the gold standard for measuring burnout today (Williamson et al., 2018). The MBI originated as an instrument for the human service professions (i.e., social workers, police, counselors), and adapted versions have been developed for medical personnel, educators, and students, in addition to a general version that can be applied to any occupation (Mind Garden, Inc., 2019). The scale evaluates burnout by addressing three established dimensions: emotional exhaustion, depersonalization, and personal accomplishment (Maslach & Jackson, 1981). The continuation of the empirical phase of burnout research through the 1990s saw theoretical and methodological contributions from the field of organizational psychology, lending further strength to the scholarly base of burnout research through more established, quantitative approaches (Maslach et al., 2001). Focus shifted to more varied aspects of the concept, with research beginning to explore multiple potential influences and consequences, including the long-term impacts of burnout and how interventions can alleviate burnout (Maslach et al., 2001). Organizational psychologists also began to relate burnout to established psychological constructs like job stress, job satisfaction, and organizational commitment (Heinemann & Heinemann, 2017). Over the past two decades, research on burnout and OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 15 occupational stress has continued to grow, including numerous studies focusing on the causes of burnout, the prevalence of burnout in different occupational groups, the development and implementation of interventions to alleviate job stress and burnout, and the psychological and physical symptoms of job stress and burnout (Heinemann & Heinemann, 2017). Defining Burnout Maslach (1982, 1998) defined three core dimensions of burnout: overwhelming exhaustion, feelings of cynicism or detachment from ones job, and a sense of ineffectiveness and lack of accomplishment. This theoretical framework has been widely used to assess burnout in various settings, and the scale for which it is the basis (the Maslach Burnout Inventory) is the best-known questionnaire used in most clinical studies assessing burnout (Teo et al., 2020). As described by Maslach (2001), the exhaustion component represents the individual stress dimension of burnout, the cynicism and detachment component incorporates the interpersonal context, and the element of reduced efficacy and accomplishment represents the self-evaluation aspect of burnout (p. 399). In 2019, the World Health Organization (WHO) utilized Maslachs multidimensional model in their definition of burnout when they included it in the 11th Revision of the International Classification of Diseases (ICD-11). While they do not classify it as a medical condition but rather an occupational phenomenon, the WHO acknowledges mental well-being in the workplace as a key health issue (WHO, 2019). The WHO (2019) defines burnout as: a syndrome conceptualized as resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: feelings of energy depletion or exhaustion; increased mental distance from ones job, or feelings of negativism or cynicism related to one's job; and reduced professional efficacy (para. 4). OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 16 Occupational Stress and Burnout in Healthcare Professionals Healthcare professionals are exposed to multiple psychosocial hazards stemming from workplace conditions and demands, frequently leading to high levels of occupational stress (Karadzinska-Bislimovska et al., 2014). Stress in healthcare professionals can often stem from factors like work overload, time constraints on work, unpredictable work hours, social and emotional challenges from working closely with others, lack of staff, and high levels of responsibility (Karadzinska-Bislimovska et al., 2014). Ravalier et al. (2020) found that many healthcare professionals experiencing occupational stress described a lack of support and understanding about mental health issues from their organizations management. Some professionals described a busy work environment just about surviving each day, leaving little time for physical and mental breaks, relationship building, or quality communication with leadership (Ravalier et al., 2020, p.7). In the earliest burnout research, it was noted that individuals in human services and healthcare, occupations with high levels of emotional and interpersonal stress and in which aiding those in need is the primary goal, were at a very high risk of burnout (Maslach, 2001, p. 399). Further research has explored the prevalence of burnout in healthcare workers, seeking to identify contributing factors and develop ways to counteract the effects of stress and burnout. Green et al. (2020) found that more than 50% of nurses, physician assistants, and physicians report symptoms of burnout and emphasize that the well-being of healthcare professionals is critical for the provision of safe, quality patient care. Occupational stress and burnout in healthcare workers are simultaneously individual, organizational, and patient safety issues. Individual symptoms of high occupational stress and burnout can be severe and include physical and emotional issues, like chronic fatigue, memory deficits, depression, increased risks of OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 17 substance abuse and suicide, and relationship disturbances (Green et al., 2020). At the organizational level, issues like turnover, decreased job satisfaction, and absenteeism can result from occupational stress and burnout (De Hert, 2020). Potential negative impacts on patient care and safety are also a key concern, with some examples including medical errors resulting from overwhelming exhaustion and fatigue, a lack of relationship building with providers because of high job turnover, and a general lack of compassion in care from a cynical/detached provider (Green et al., 2020). These issues can begin with lowered levels of patient satisfaction and can escalate to malpractice and fatal errors (Mangory et al., 2021). Contemporary Impacts on Occupational Stress and Burnout in Healthcare Professionals The current climate in healthcare has evolved and changed since Maslachs early work on conceptualizing burnout, with many contemporary issues emerging that have significantly impacted stress and burnout for healthcare professionals. Healthcare professionals face emerging pressures from organizational cultures that devalue the individual, focus on pushing productivity, and decrease provider autonomy (Dillon et al., 2020). Chmielewski et al. (2021) added that the ever-evolving modern healthcare work environment promotes a culture of perfectionism that can intensify stress, impede work-life balance, and contribute to burnout. Many professionals report that the current climate has led to excessive workload, decreased personal time, lack of control over bureaucratic administrations, and high levels of work-life conflict, contributing to high stress levels and burnout (Schrijver, 2016). Recent years have also seen a marked increase in gun violence and other mass casualty events, such as higher rates of climate-related natural disasters (Leaning & Guha-Sapir, 2013). Many healthcare professionals suffer from secondary trauma from working with individuals experiencing a traumatic event (Hensel et al., 2015). An array of negative psychological changes OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 18 can occur after indirect trauma exposure, including secondary traumatic stress (STS), usually resulting in socioemotional symptoms like extreme stress and avoidance, and compassion fatigue, characterized by a lack of capacity or interest in maintaining empathy and bearing the suffering of others (Dar & Iqbal, 2019). Healthcare professionals experiencing STS or compassion fatigue often have symptoms that impact their personal and working lives that extend to the quality of care they can provide (Dar & Iqbal, 2019). Since March 2020, the COVID-19 pandemic has been a major factor contributing to occupational stress and burnout for healthcare professionals. The pandemic has presented new challenges, like high volumes of patients requiring advanced critical care, isolation precautions, and PPE shortages, and exacerbated existing stressors like long hours, low staffing, and inadequate institutional support systems (Hesselink et al., 2021). In a 2020 survey of U.S. healthcare professionals, 42.7% indicated they were facing work overload, and 49.4% reported experiencing burnout due to the stress of the pandemic (Prasad et al., 2021). The stress of the pandemic has only worsened as time has gone on. In an early 2021 Washington Post poll of healthcare professionals, 62% of respondents reported that stress related to the pandemic had a negative effect on their mental health, and 55% reported feelings of burnout (Clement et al., 2021). In the survey, 25% of all respondents had at least one patient die of the disease, and one nurse described what felt like a mass casualty event every day (Clement et al., 2021). Healthcare professionals surveyed described a combination of exhaustion from extended work hours and increased responsibilities and emotional exhaustion from treating critically ill, isolated patients, and high death rates (Clement et al., 2021). One physician described the frustration of knowing his team has given their best efforts but continuing to see their patients die (Clement et al., 2021). The worry, frustration, fear, and stress brought on by the pandemic have caused OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 19 considerable trauma for many healthcare professionals. Wild et al. (2021) found high diagnostic rates of post-traumatic stress disorder and major depression in frontline healthcare workers. Talaee et al. (2020) found that healthcare professional stress and burnout are associated with an increased frequency of medical errors and decreased quality of healthcare services and added that the additional stress attributed to the pandemic has adversely impacted patient care. For pathology professionals, the high demand for COVID-19 testing during 2020 and 2021 has created even more demanding workloads, exacerbating the lack of staffing and schedule control already felt before the pandemic (Golab, 2021). Nowrouzi-Kia et al. (2021) surveyed medical laboratory technologists during the second wave of the pandemic in 2021, finding a 72.3% burnout rate in these frontline laboratory professionals. High quantitative demands and high work pace were reported to be chief factors associated with medical laboratory technologist burnout (Nowrouzi-Kia et al., 2021). The extraordinary circumstances and impacts on mental health brought on by the pandemic have helped bring the importance of monitoring healthcare professionals stress and developing tools to address stress and burnout to the forefront (Prasad et al., 2021). Occupational Stress and Burnout in Pathology Professionals Pathology professionals, a group comprising pathologists, residents, and more than 15 types of medical laboratory professionals, including pathologists assistants, play a unique behind-the-scenes role in patient care. Most pathology professionals have little to no direct patient contact, yet their work impacts almost all aspects of patient care, from the diagnosis of disease, to developing treatment plans, to monitoring disease progression and response to treatment (Kelly et al., 2020). Celik et al. (2021) asserted that the potential for negative impacts on patient care requires every medical specialty with its unique professional characteristics to OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 20 receive a separate, focused evaluation for burnout. Research focusing on occupational stress and burnout in pathology professionals has been minimal until recent years (Cohen et al., 2022; Smith et al., 2022). Until a 2020 study, the last widely published survey on stress in nonphysician pathology professionals was conducted in 1987. The study by Liller (1987) found high levels of occupational stress in the surveyed population of American Society for Clinical Pathology (ASCP) certified medical technologists. Some specific causes of stress included the pressure to produce fast lab results, perceptions of low pay and high demand, limited authority, and a lack of respect from organizational leadership, other healthcare professionals, and the public (Liller, 1987). Burnout and occupational stress in pathology recently reemerged in the academic literature as attention to wellness in the medical professions has grown. In early 2020, the ASCP conducted a cross-sectional survey study to extract information about job satisfaction, wellbeing, job stress, and burnout among pathologists, pathology residents, and medical laboratory professionals (Garcia et al., 2020). The survey sought to gain basic data on stress, satisfaction, and burnout; determine factors influencing these constructs; and offer some recommendations for potential programs to promote well-being and prevent burnout (Garcia et al., 2020). The survey found that most respondents reported feeling stress, mainly due to workload, with the majority reporting feeling at least slightly overwhelmed by their workload and responsibilities, and the majority also reported feeling at least slightly anxious/worried about their work (Garcia et al., 2020). For pathologists in the study, 71.4% reported feeling burnout at some point in their career as a pathologist, with around a third currently experiencing burnout at the time of the survey (Garcia et al., 2020). Pathology residents reported nearly the same rates of burnout (Garcia et al., 2020). Among medical laboratory professionals, 85% reported burnout at some OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 21 point in their careers, and about half said it was a current issue (Garcia et al., 2020). Smith et al. (2022) conducted a burnout-specific mixed methods study in which pathology professionals, including pathologists, pathologists assistants, and laboratory professionals, completed the Mini Z Burnout Survey and were provided with open-ended questions in which they could clarify answers and provide additional descriptions. In surveys completed just prior to the emergence of the COVID-19 pandemic, a 58.4% burnout rate was identified, with markedly higher rates of burnout in laboratory professionals and pathologists assistants than in pathologists. In a similar pre-pandemic mixed-methods study, Keith (2022) surveyed 427 Canadian pathologists, reporting a 57.6% burnout rate, noting the difference between that finding and the 44% baseline pre-pandemic burnout rate for American physicians across all specialties. Cohen et al. (2022) got a similar response, with 48% of the 1256 pathologist respondents reporting experience with burnout. For these pathologists, burnout was most commonly experienced at the beginning of their residency training and in their first three years of professional practice (Cohen et al., 2022). As research interest in burnout has reemerged, the recent findings of these larger scale studies in many ways parallel early findings from Lillers 1987 work. Recent surveys also revealed key differences in the causes and manifestations of the burnout experience among different roles in the pathology laboratory. Current research trends reflect not only that burnout still exists in pathology professionals but also underscore the need for further research and effort to address burnout in this population. Contributing Factors Factors contributing to occupational stress and burnout in pathology professionals are varied. Garcia et al. (2020) found that 69% of respondents feeling high levels of job stress were OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 22 also experiencing burnout, with the highest levels of burnout in clinical pathology and lowest in anatomic pathology. The survey found that the top issues contributing to burnout were increased workload, inadequate support staff, lack of support, understanding, and respect from hospital administration, and feeling undervalued by the department and colleagues (Garcia et al., 2020). Workload has emerged as a common issue for many pathology professionals. In the 2020 ASCP survey, more than half of the participants reported stress due to workload (Garcia et al., 2020). For pathologists in the Keith (2022) Canadian survey, workload issues were the number one stressor. Alrawahi et al. (2018) found that many laboratory professionals expressed unhappiness and heightened stress due to workload increases with no accompanying recruitment of additional staff. Chiou (2021) spoke to cytotechnologists who cited productivity expectations as their most common stressor, describing the pressure to complete an expected number of cases daily. In a 2017 survey of medical laboratory scientists, those reporting high stress levels also reported stressors related to their physical work environment (i.e., safety concerns), high job demand, insufficient job control, job insecurity, and higher levels of interpersonal conflict with colleagues (So et al., 2017). So et al. (2017) found that laboratory professionals with lower degrees of autonomy, self-efficacy, and authority to influence the content of their jobs had the highest overall stress levels. As they often handle hazardous chemicals and biohazardous specimens, frustrations from potential safety issues are also a common cause of stress. Alrawahi et al. (2018) found that many laboratory professionals report an absence of a safety culture in their workplace, demonstrating that exposure to toxic chemicals and hazardous materials is a leading factor contributing to job dissatisfaction and stress in laboratories. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 23 Ergonomic and physical stressors are also an issue for any pathology professionals. Pathologists and cytotechnologists spend long hours at a microscope, increasing their risk for vision issues and musculoskeletal pain (Chiou, 2021). Kadivar et al. (2021) investigated workrelated hazards for pathologists in a cross-sectional survey, finding physical issues like musculoskeletal pain and visual disturbances to be prevalent conditions alongside depression and burnout. Cytotechnologists have also shown high rates of musculoskeletal disorders and related symptoms are a significant stressor in that population (Chiou, 2021). For pathologists assistants, engaging in repetitive motion and the prolonged daily use of tools like scalpels and forceps could contribute to similar physical issues. A contributor to the stress related to safety issues is inattention from management. Many laboratory professionals reported feeling frustrated and stressed due to managements failure to address safety issues and promote a culture of safety (Alrawahi et al., 2018). Many laboratory professionals also reported feeling demoralized by the lack of professional recognition from other healthcare professionals and the wider community (Alrawahi et al., 2018). Smith et al. (2022) heard from medical laboratory professionals and pathologists assistants who described experiencing a lack of respect from other healthcare professionals and feeling demoralized, unsupported, and unappreciated. Alrawahi et al. (2018) added that a lack of appreciation, coupled with the potential hazards of the job, is often cited as a primary reason for professionals to leave their positions. Poor work atmosphere and a lack of positive relationships with colleagues and leaders also contribute to stress for laboratory professionals. A negative work atmosphere and instances of interprofessional incivility and disrespect were key stressors for pathology professionals in the Smith et al. 2022 study. For Alrawahi et al. (2018), poor communication and a lack of perceived OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 24 respect were common themes, with many respondents reporting little to no direct contact with leaders, a lack of meetings, and broken or nonexistent relationships with managers. Alrawahi et al. (2018) suggest that one focus of potential stress reduction interventions should be improving relationships between laboratory professionals and their superiors, which could contribute to a greater sense of respect and appreciation and facilitate establishing a safety culture and better addressing safety concerns. Pathologists assistants hold a unique role as allied health providers with a responsibility level between the pathologist and the laboratory technician. In the 2022 Smith et al. burnout study, PAs listed loss of job satisfaction and negative work atmospheres as primary stressors contributing to their burnout symptoms. Smith et al. (2022) also acknowledged that stressors weigh differently across job roles in pathology, highlighting the need for more specific inquiries into particular roles. Job Impacts and Outcomes Liller (1987) called attention to the fact that laboratory professionals may not directly face patients but still perform procedures and make decisions that ultimately affect patient outcomes, acknowledging that the high stress levels she identified could lead to laboratory professional burnout. Liller (1987) added that burnout could impact the ability of a pathology professional to perform their duties properly, potentially resulting in adverse outcomes like delayed or inaccurate test results which could negatively impact patient care. Job instability and lack of job autonomy have been correlated with higher levels of workplace accidents, and many other stress factors, like interpersonal conflict and physical environment, are correlated to cognitive failure, which could indirectly lead to accidents and errors (So et al., 2017). Hernandez (2018) contended that burnout is an underrecognized cause of laboratory errors. As a laboratory OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 25 medical director, Hernandez recognized that burnout among other healthcare professionals likely drives a negative feedback loop that affects laboratory personnel (Hernandez, 2018). Hernandez (2018) added that while there is little direct evidence in the current literature, stress and burnout likely contribute to preanalytical errors like incorrect test ordering, patient identification errors, incorrect specimen handling, and mislabeled specimens; analytical errors like lost specimens, specimen mix-ups, and misread results; and post-analytical errors like lost results and increased turnaround time (delayed results). Stress and burnout also drive job dissatisfaction, which for laboratory professionals has often led to increased turnover and staffing issues (Alrawahi et al., 2018). Pathologists and pathologists assistants reported a loss of job satisfaction as a primary driving force of their burnout experiences (Smith et al., 2022). Collaborative work environments, where communication, teamwork, communication, and psychological safety are valued, are less likely to see employee burnout (Golab, 2021). Plebani (2009) added that communication and teamwork are also vital in preventing errors and promoting quality patient care in the laboratory. The Stress and Burnout Experience The findings revealed in the 2020 ASCP survey underscore the multifactorial, personal nature of stress and burnout and the importance of understanding individual experiences. In an editorial following the surveys publication, Kroft (2020) explains that the issue of medical professional stress and burnout flew under the radar for many years, partly due to a cultural view that those in the medical professions should not be whiny or weak, attributes commonly ascribed to those speaking out about stress and burnout (p.423). Kroft (2020) called the high prevalence of job stress and burnout in pathology professionals an enormous concern. Kroft pointed out that the 2020 ASCP surveys represent a starting point to further determine OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 26 contributing factors and outcomes of burnout and stress and identify the types of interventions that might successfully address them (Kroft, 2020). Additional studies in recent years have sought to add to the data on burnout in pathology professionals and have begun to uncover some of the root causes and factors associated with stress and burnout. Further inquiry using a qualitative approach can garner more specific information about how these causes and factors influence the personal stress and burnout experiences of different pathology professionals. Rich descriptions of these unique experiences may prove valuable not only in understanding these phenomena but in developing tailored, specific ways to mitigate these issues and their effects on this population. Method Study Design The study was conducted using a basic interpretive approach, drawing on principles of phenomenology. The broader focus of qualitative research is to understand how individuals make sense of their lives and experiences. The basic interpretive approach seeks to uncover, explore, and interpret these meanings (Merriam, 2002). This qualitative study focused on an effort to gain a deeper understanding of the experiences of pathologists assistants with occupational stress and burnout. The study focused on the individual experience and the personal meanings each participant ascribed to their situation. This focus fits well with the basic interpretive approachs interest in understanding how people interpret their experiences and how they attribute meaning to their experiences (Merriam, 2002). Potential participants were invited to complete a one-on-one, in-depth interview with the primary researcher. Data collection took place from March 2022 to June 2022. The study was approved by the University of Indianapolis Institutional Review Board in February 2022, prior to the recruitment of participants. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 27 Participants The study initially sought to recruit participants currently employed as pathology professionals, defined as individuals whose primary work is in the pathology laboratory setting, either as a physician (pathologist), physician trainee (pathology resident), advanced provider (pathologists assistant), or in another medical laboratory profession. The only inclusion criterion for recruitment was adults currently in a primary role as full-time pathology professionals (as defined above). Any individual who met that inclusion criterion was eligible to participate. The only exclusion criteria were individuals who were non-English speaking or currently employed by the same organization as the primary researcher. The study sought a sample from the target group to provide diverse experiences and rich dialogue. The study included 12 participants, based on continual appraisal of the sample throughout the study to determine if the sample size was adequate for analysis. This appraisal incorporated the concept of information power, as described by Malterud et al. (2015), by assessing the samples specificity and the quality of the interview data obtained through the lens of the studys aims. Procedures Sampling and Recruitment The study utilized a purposeful sampling strategy, seeking individuals in the population of interest with diverse experiences. Purposeful sampling in qualitative research lends itself to the selection of information-rich cases, lending depth to the data acquired (Patton, 1990). A maximum variation strategy was employed to obtain the initial sample, seeking participants with multiple roles in the field. Maximum variation provides a small, diverse sample yielding highquality, detailed descriptions that can reveal central themes and patterns in the population of interest (Patton, 1990). Initial recruitment began in March 2022, targeting multiple professional OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 28 organizations comprised of pathology professionals in various positions, such as pathology residents, pathologists, pathologists assistants, cytotechnologists, and histotechnologists. Potential participants were recruited primarily from social media outreach. The Facebook pages of professional organizations of pathology professionals, including The American Society for Clinical Pathology (ASCP), American Association of Pathologists Assistants (AAPA), National Society for Histotechnology (NSH), and American Society for Cytotechnology (ASCT), were targeted for recruitment. The moderators of each page were contacted via Facebook message to obtain permission to post a recruitment advertisement on their Facebook page. Once permission was obtained, the primary researcher posted an infographic (Appendix A) with basic information about the study and its aims, including some brief background on the primary researcher, the topic of interest, methods, confidentiality, required time commitment, and how to reach out to express interest in participating. The infographic included the primary researchers email, to which potential participants were asked to respond if they were interested in participating or had questions and wanted to learn more about the study. The post also included instructions encouraging individuals to share the recruitment infographic with any other pathology professionals they know who may have been interested to enable the potential for snowball sampling. Snowball sampling aids in accumulating information-rich cases (Patton, 1990) and, for this study, opened the door for potential participants who might not have otherwise been reached. A disproportionate number of potential participants emerged from the pathologists assistant (PA) group, representing a variety of work settings and years of experience. Difficulties were encountered in obtaining participants with other roles. Some potential participants expressed a lack of time to commit to an interview, and others said they would like to help but OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 29 did not feel they had much experience to share. After additional attempts to recruit non-PA participants, the potential merits of a study focusing solely on pathologists assistants were discussed. It was determined that the sample could still provide diverse experiences and could provide beneficial insight into challenges in the profession. The population of interest was then shifted, and the study focused on the experiences of pathologists assistants. Potential participants emailed the primary researcher to express an interest in participating. They were then screened via email to ensure that they met the inclusion criteria and to answer any questions. Informational phone calls or web conferences with the primary researcher were available at the participants request. Potential participants were provided with an IRB-approved informed consent form which included additional background information about the study, including a basic overview of the interview process, confidentiality information, and the studys aims. Once eligibility was confirmed, the potential participant was given an opportunity to review the study information and have any additional questions answered. Upon expressing a desire to move forward via email, an invitation to schedule a one-on-one interview via Zoom was extended to each participant, and interviews were scheduled at the participants convenience. Informed Consent The study was submitted for review and approval by the University of Indianapolis Institutional Review Board and followed all ethics procedures required by the University of Indianapolis Human Research Protections Program. Informed consent was obtained from all participants. Specifically, an informed consent form containing key information for potential participants, including details about the purpose of the study, requirements of the participants during the study, potential risks/inconveniences, potential benefits, methods to protect OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 30 confidentiality, and researcher contact information was shared via email with each participant for their review. In the email, the primary researcher assured each participant that they would be available to answer any remaining questions and would set up appropriate calls or web conferences as needed. Once all questions were answered, and participants agreed to move forward, the primary researcher communicated to each participant that their verbal consent to participate in the study would be obtained prior to the start of their interview, then interviews were scheduled. At the start of each interview, the primary researcher asked each participant for any remaining questions, then obtained their verbal consent to participate in the study and for audio to be recorded. Data Collection The primary researcher conducted one-on-one interviews with each participant from March 2022 to June 2022. Interviews took place remotely via Zoom web conferencing and were scheduled at the participants convenience. At the beginning of each interview, the researcher reviewed the study information sheet with the participant, allowed an opportunity for the participant to ask any remaining questions, and obtained verbal consent to participate in the study. Participants were reminded that their interview would be audio-recorded and that interview audio would be used only by the researchers and would not be shared or disseminated. Each participant provided their consent to be audio recorded. They were also reminded that they could decline to answer any question and terminate the interview at any time. A semi-structured interview guide (Appendix B) was utilized for each interview, focusing on open-ended questions to encourage participants to share as much of their stories and experiences as they wished. The interview began with broad questions allowing each participant to speak about their experiences in the field of pathology, including their role, approach to their work, and successes OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 31 and challenges. As the interview progressed, questions became more focused, beginning with some general inquiry about job stress, then allowing each participant the opportunity to consider and voice their personal views on the concept of burnout. The focus then shifted to the participants potential personal experiences with burnout. Interviews ran from approximately 3590 minutes in length. At the end of each interview, participants were reminded that their personal information would be kept secure and that they could contact the primary researcher if they had any questions or concerns after the interview. The primary researcher memoed throughout the data collection process, documenting ideas about emerging patterns in the data and reflecting on personal views and experiences. Birks et al. (2008) pointed out that memoing can be useful throughout the research process from conceptualization to analysis, providing opportunities to clarify thinking on the topic and question, articulate assumptions and potential biases, and guide a studys development. Data Management & Analysis Data management and analysis procedures primarily followed the suggested steps for qualitative studies outlined by Creswell and Poth (2018). The qualitative analysis web-based application Dedoose (9.0.54) was utilized in the management and analysis of data. Dedoose is a secure platform that allows for collaboration among research team members, with the capability for file storage, coding, and memoing (Dedoose, n.d.). Data management involved organizing and storing files to promote data security. First, audio files of the interviews were saved to the primary researchers password-protected computer, utilizing a standardized file naming system. Specifically, each audio file included the interview date and an assigned identification number for each participant to protect participant privacy. This consistency facilitated the accessibility of files later in the analysis process (Creswell & Poth, 2018). A spreadsheet was also created for OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 32 organizational purposes, including the participant ID, data collection date, audio run time, and additional pertinent information. Audio recordings of the interviews were transcribed verbatim, utilizing Temi, a webbased audio-to-text software application. Transcripts were reviewed for accuracy by the primary researcher, and any identifying information was removed. The data analysis phase then began with an in-depth reading of the interview transcripts, allowing the primary researcher to become immersed in the data. This process was repeated several times, allowing for an initial exploration of the data as a whole before breaking down the information into smaller pertinent pieces. Marshall and Rossman (2011) explained that immersion in the data is a critical step, as reading and rereading through the data allows the researcher to become intimate with the material. Additional memoing took place throughout the process. The primary researcher took notes while reading the data, including summaries of the data, thoughts on emerging concepts and meanings, and recollections from the interview about non-verbal cues or other pertinent details. Creswell and Poth (2018) recommended prioritizing memoing throughout the analysis process, beginning with the initial reading of the data. As the process continues, memos are a valuable source for the researcher to track code and theme development. Memoing can also be a key component of bracketing, in which researchers set aside their own experiences as much as possible, contributing to establishing the trustworthiness of study data (Creswell & Poth, 2018). Next, the primary researcher engaged in the process of coding the data. This process began with reviewing the transcripts, then identifying initial codes as concepts were mentioned. Specifically, transcripts were reviewed multiple times, and words, phrases, and statements that stood out in relation to the research questions were highlighted. Initial codes were then identified by assigning an associated label to highlighted segments within the Dedoose platform. Once OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 33 initial codes were named, they were listed and described; then, the list was reviewed. Codes were combined or separated as appropriate, allowing a full list of codes to take shape. A second coder with expertise in qualitative research methods then independently and separately coded one interview transcript selected by the primary researcher for its rich description and depth. The two coders then met via Zoom to discuss and compare codes, after which the primary researcher established a final list of codes. The finalized list of codes with descriptions provided the foundation for creating the codebook, which includes a list of final codes, a description of the code to include any inclusion/exclusion criteria, and examples of the code from the study data (Creswell & Poth, 2018). The codebook was then reviewed to begin the classifying process, in which themes were developed. Creswell and Poth (2018) described classifying as taking the qualitative data apart piece by piece while looking for like categories, themes, or dimensions of information, usually resulting in five to seven general themes. Significant statements and codes were examined and grouped into larger units to form broader themes. As recommended by Creswell and Poth (2018), strategies employed in the classifying process included writing brief summaries of recurring and remarkable aspects of the data and creating visual representations of the data, similar to concept maps, depicting relationships between codes and aspects of the data. The second coder was also consulted at this point, ensuring that the themes accurately reflected their independent interpretation of the data. Finally, interpretations were developed as the data was abstracted beyond the code and theme units to articulate the datas greater meaning (Creswell & Poth, 2018). This process drew on elements of the viewpoint of hermeneutic or interpretive phenomenology. Hermeneutic phenomenology goes beyond a knowledge of the core essence of a phenomenon and OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 34 acknowledges that humans are interpretive beings who find their own meaning in their lives and experiences (Wojnar & Swanson, 2007). The research questions were written to focus on understanding how the phenomena of occupational stress and burnout have been experienced by study participants, focusing on the unique personal significances and meanings the participants have seen in their experiences. While drawing on this view, the hermeneutic concept of incorporating the researchers own understanding of the phenomenon was not utilized (Wojnar & Swanson, 2007); instead, the researcher continually focused on bracketing to promote neutrality. The process of developing initial interpretations began with a review of the transcripts, codebook, and themes, followed by the documentation of preliminary ideas. The second coder was consulted for feedback on initial interpretations and to add any independent interpretations they may have gathered. Feedback using member checking was also incorporated. Specifically, participants were emailed in September 2022 and were asked to review the themes and preliminary analyses and provide honest feedback on how accurately the themes reflect their own experiences. Critical evaluation from participants is vital to establishing credibility and allows participants the opportunity to express how well the products of data analysis represent their experiences (Creswell & Poth, 2018). During these post-interview interactions with the participants, the primary researcher allowed participants opportunities to ask questions and provided information and resources on stress and burnout. Acknowledging that the experiences discussed in the interviews could be highly personal and emotional, the primary researcher provided a list of resources about stress management and burnout to the participants during this stage so that they could seek additional information as needed. Participants who responded to the member checking email expressed agreement with the themes and interpretations and stated that they saw their own experiences reflected in the analysis. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 35 The feedback and initial ideas from participants were reviewed, and the primary researcher then wrote a description of the phenomenon and how it was experienced. As recommended by Creswell and Poth (2018), a textural description of what the participants shared was created in addition to a structural description of how the phenomena were experienced by the participants (p. 201). A composite description was then developed, incorporating the textural and structural descriptions as they came together to form interpretations of the broader meanings of the participants experiences. Rigor/Trustworthiness The conventional standards for demonstrating rigor in quantitative research have proven difficult to properly apply to qualitative methods. Thus, qualitative rigor has been the subject of criticism and debate over the years (Ryan-Nicholls & Will, 2009). Gubas 1981 Model of Trustworthiness of Qualitative Research translates concepts of rigor from the quantitative paradigm into criteria that apply to qualitative methodologies. The first concept, credibility, is similar to quantitative internal validity, reflecting how the results accurately represent the stories shared by study participants (Henderson & Rheault, 2004). As part of the strategy to ensure credibility, the primary researcher engaged in reflexive analysis throughout the research process. The specific strategies of memoing and journaling were utilized. Extensive work was put into bracketing, ensuring that time was taken to reflect on personal experiences, beliefs, and potential biases, and a thoughtful effort was taken to set them aside. In addition, member checking during data analysis, allowing participants to ensure that the data accurately reflects what they desired to express in the interview, also added to credibility. Transferability is similar to the quantitative concept of external validity, supporting the ability to generalize study results, which for a qualitative study could be described as the OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 36 potential for the studys results to reasonably be applied to a similar group of individuals experiencing the same phenomenon in a similar context (Henderson & Rheault, 2004). To contribute to establishing transferability, clear explanations of the methods employed to include an audit trail and detailed descriptions of the sample, contextual information, and boundaries of the study, are provided. Dependability, much like quantitative reliability, refers to the consistency of the results (Henderson & Rheault, 2004). To increase the studys dependability, a second coder independently worked with the raw data, and the methods used in the study were clearly delineated. The element of confirmability, analogous to quantitative objectivity, is critical for a qualitative study, evaluating for neutrality and the reduction of research bias (Henderson & Rheault, 2004). Continual engagement in reflexivity throughout the processes of data collection, analysis, and presentation was key to establishing confirmability. The primary researcher was sure to remain aware of personal experiences, views, and potential biases throughout the process and continually made an effort to maintain neutrality and objectivity. Results Twelve participants were interviewed for this study. Each participant was a practicing pathologists assistant (PA) with years of experience ranging from 1 year to 26 years, with a mean of 7.83 years (6.52). The participants were evenly mixed with respect to two additional demographic elements: working as a solo PA vs. in a PA team and working in an academic vs. private setting. Ten of the twelve participants shared that they experienced burnout at some point in their PA career. Four major themes emerged in relation to the research questions: how do pathologists assistants experience and manage occupational stress, and how do pathologists assistants perceive and define professional burnout? Themes relating to the first research question OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 37 regarding occupational stress were: workload, physical demands, interpersonal issues, and lack of respect/understanding. The four additional major themes that arose regarding the second research question about burnout were: physical impacts, emotional and interpersonal impacts, potential patient care impacts, and addressing burnout. Themes are illustrated in Figure 1. These themes and associated subthemes create a detailed picture of the experiences and perceptions of pathologists assistants regarding occupational stress and burnout. Occupational Stress Workload A common stressor among all participants was workload and issues that arose in relation to workload. Like in other healthcare fields, chronic understaffing was a common issue, and among participants this occurred in both academic and private settings, and for solo PAs as well as PAs working with a team. For many participants, understaffing led to the expectation to work long hours with multiple demands on their time. Most participants were salaried employees, with no overtime compensation, and yet many consistently worked more than 8 hours a day to keep up with workload demands. P10 expressed that in one job, it was just kind of expected that youre there like overtime every day and, they would just expect you to give up your lunch, to not take vacation, to stay late and be grateful for the opportunity. With understaffing came increased demands, and as P9 stated, I was never, ever caught up because they [my employer] just kept putting more and more things on my plate. Participants described feeling overwhelmed with the number of tasks they were asked to take on, with many facing the challenge of balancing work on the laboratory bench with other responsibilities. P12 described, with the understaffingIm grossing more than full time and then getting behind on QA reports and other things, and its stressful, just trying to keep on top of everything. P4 added the insight that OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 38 we have a position thats unique and its great that people need us because of our knowledge and what we can do, but were being pulled in a lot of different directions and that can just get exhausting and can be too much. Physical Demands Many participants expressed feeling stress caused by the physical demands of the job. Among participants, this stress was experienced at equal levels among solo and team PAs and among academic setting PAs and PAs working in private groups. The physical demands of the job also took a toll on participants across the range of years of experience. P10 described that, in this job you have amazing skill, but it is so hard on your body it just tears up your hands and your wrists and your neck and your legs and it just kills your body. The main duty of the pathologists assistant is grossing, a colloquial term used to describe the gross examination and dissection of surgical specimens. This can be performed from standing or seated positions, and many participants expressed that they prefer to work while standing. Looking down at delicate tissues and tasks from a standing position can result in being hunched over for hours on end as described by P9. For P3, even with an adjustable height workstation, there was a struggle to find the right position: the less I have to bend my neck the better, so Ill lift the station and then my shoulders will hurt so the next day Ill bring it down, and itll be more pressure on my neck than my shoulders I alternate because I know its gonna be one or the other. Chronic back pain and neck pain were common among nearly all participants, with some also experiencing hand and wrist issues caused by repetitive motion and tool use. P3 also added that it got to the point where I started having carpal tunnel issues because of just the physical strain of gripping those forceps all day and holding that scalpel handle. Several participants OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 39 voiced that stress was exacerbated by the fact that wrist or hand injuries could leave them unable to work. For P5, it was scary to think that one injury could actually end my career. Both P9 and P10 shared insight that in many other physically demanding medical professions, like surgery or massage therapy, practitioners dont usually work on patients every day, much less for eight hours a day, five days a week. P9 went so far as to add, this job is really physical and I dont think its realistic for some people to gross all day every day. Another aspect of the physical demands of the job is the chemical exposure PAs experience in the laboratory. PAs work with and around toxic, carcinogenic chemicals like formalin and xylene, which can both cause acute and chronic health effects such as headache, dizziness, nausea, and irritation of the eyes, skin, nose, and throat (Dimenstein, 2009; Kandyala et al., 2010). P10 said, I do stress about my exposure to chemicals but was an outlier among participants in that all the labs Ive been in have been pretty good about addressing any problems. Many participants experienced situations in which abnormal chemical exposure was occurring, and management was unresponsive in addressing the issue. For P3, it was a manager who did not believe there was a problem: I got my monitoring badge back and it was two and half times the allowable limit, and she tried to say, well it was probably contamination. P11s concerns were also dismissed by management: I complained about it so much. My eyes are burning, my nose is burning, my throats burning, and they were just like oh yeah, sure, well get it [the air vent] cleaned or something For many others, they found their department to be low on their hospitals priority list. P2 described a time when the air filtration system in the lab went down: we were all smelling xylene, and other chemicals, and we really struggled to get people to listen to us. We had headaches, people who had to leave for fresh air because they were OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 40 getting lightheaded and winded. Some participants theorized that hospital responsiveness might have been lacking because the pathology lab is not a patient-facing area. As P10 put it: It just seems to me that in general, because pathology is behind the scenes, its always at the bottom of the list for hospitals. Interpersonal Issues Another common source of stress among most participants was problematic interpersonal relationships in the laboratory. This stressor was seen equally among solo and team PA participants, participants in academic and private settings, and for participants across the spectrum of years of experience. P12 described it in general terms: Some of our histology staff is really uptight, and we get some surgeons that are really demanding and just trying to people please everyone rather than just let me sit here and gross and do my job, its stressful. Many participants expressed that instead of providing support in a demanding environment, managers were often a cause of stress. Some participants reported being micromanaged, often by managers who did not fully understand the specifics or demands of a PA job. P11 described having production and speed constantly tracked by a supervisor, and P2 had a non-PA supervisor who was criticizing my ability to do my jobwhen he wasnt trained to do this job. Others described stressful situations caused by absent or indifferent management. P8 said, I feel like our lab director is more focused on the clinical lab, doesnt care so much about histology, cytology, pathology. So thats kind of something that were struggling with For P3 and P6, direct managers worked offsite and were not often present in the lab. P6 explained that its frustrating if there is an issue I feel like I need to bring up, theyre hundreds of miles away and they dont really understand whats going on in our lab setting at the moment. P3 added about one manager: she has said before, if you dont see me or hear from me, then everything is OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 41 good. Feeling like a low priority to management was dispiriting for many participants. Some felt that their voices were not valued, and many experienced heightened stress in interactions with managers, especially when they had issues to bring issues to managements attention. Lack of Respect/Understanding Nearly all participants expressed stress caused by feeling a lack of respect for their role and contributions at their workplace, with many also voicing a lack of understanding about what their job entails as a major stressor. This appeared to be more common among participants with 5 or more years of experience and was reported equally among solo and team participants and participants in academic and private settings. For many participants, stressful job experiences led to a shift in how they viewed their roles in their workplaces and the healthcare system as a whole. P10 described losing hope in being able to affect change in their workplace: I always had the idea that when you just stick with something and do your best, itll work out, but I learned that in medicine, and the laboratory especially, we are expendable, we are replaceable, we are faceless. P9 described a similar realization: I kind of had this idea that I was valued, and they did care about me, but I realized, youre disposable it was so, so disheartening. P2 expressed coming to the awareness that you put forth all of this energy and you are dedicated and hardworking and want to do the best you can, but you are not valued at all if something happens, you will be replaced tomorrow. For many participants, this augmented pre-existing stress, as they began to feel impacts from their efforts at work going unrecognized. Stress caused by the unique situation of working in a small field that is not well known to the public or even to the greater medical community was also a common theme that came up among participants. P3 said, I think the biggest challenge is our profession not being respected or recognized, and P8 added that there is a lack of support and appreciation that I feel like OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 42 weighs pretty heavily on our profession. P10 acknowledged that not only are we a forgotten profession because were just so small people dont know what we do, but then its compounded by being in this faceless department the [medical] people dont care about also. P9 added that I do feel like theres this piece of me that is frequently stressed by like not being recognized and people not really understanding my experience. Some participants felt that this added to their stress, since few people, including other medical professionals could relate to the high stakes and demands of their job. Burnout Out of the 12 participants in the study, 10 expressed having felt burnout at some point in their PA career. Burnout was seen equally among participants working as solo PAs and on teams, in academic and private settings, and across the range of years of experience. In each interview, the participant was asked to describe what burnout looked like to them, in their own words, aside from current official definitions. P3 mentioned physical exhaustion, mental exhaustion and the inability to focus and stay focused at the level that is safest for the patient in addition to the inability to balance between work and family. P10 described feeling overwhelmed and losing motivation, and P4 added the feeling like theres just too much, I just cant keep up These sentiments were echoed in the experiences of most other participants. Physical Impacts Every participant who expressed experiencing burnout described some sort of physical impact, ranging from general exhaustion to issues requiring medical attention. Back pain, neck pain, and physical tension were described as chronic issues that arose for participants in stressful times at work. When experiencing burnout, these conditions were exacerbated for many OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 43 participants. P12 developed Achilles tendonitis and was prescribed physical therapy, while P9 also underwent physical therapy for work-related chronic neck pain. On the more severe end of the spectrum, one participant experienced the emergence of an autoimmune condition that greatly disrupted their life both at work and outside of work, describing that, I was so stressed out that I was getting really, really sick and flare-ups were happening like once a month because I was just so stressed. Another participant shared a significant medical experience related to their work stress: I thought I was having a heart attack at work. I went to the ER and everything because I was so stressed out I was short of breath, my heart was racing, I had chest pains, and of course it was just stress, just physically manifesting like that. Multiple participants also described sleep disruptions, with P5 describing weeks and months of irregular sleep [and] having dreams about work P2 added that I was not sleeping well at all, and then at work of course, I was tired. Other participants described physical exhaustion so severe, that all they could do was sleep. Both P11 and P12 described an endless cycle of long workdays from which theyd come home extremely exhausted. For P11: Id go to work for 12 hours [for a scheduled 8-hour shift] and then I would go home, shower, and fall asleep immediately, then by the time I woke up, it was like time to go to work again. I was so tired every day. P12 recalled exhaustion getting in the way of plans outside of work: I would bail [on friends] a lot more often because Id just want some time to myself, like Id just like to lay in bed until well until the next time I have to go to work! P9 summarized: I think the physical stuff isnt really in the conversation about burnout, but I think it really contributed to my case a lot. We need to talk more about what we can reasonably physically do. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 44 Emotional and Interpersonal Impacts In addition to the impact of physical exhaustion, for many participants, burnout manifested itself in emotional, mental, and interpersonal concerns. P11 recalled: Ive never been like, depressed in my life, but during those months, I felt like I was headed in that direction I isolated myself and just wanted to lay in my bed. P10 echoed a feeling of losing motivation: Im overwhelmed and exhausted to a point where Ive been going so fast and so hard for so long that all I want to do is lay down and do nothing. For P6, it got to the point where you dont even want to get up and go to work anymore, and its like, you love what you do, but youve just had enough. P12 recalled: it definitely altered my mindset, changed how I felt about work it was the first time that I just didnt want to go in, didnt want to do it, didnt have good things to say about it. Multiple participants described their burnout having an impact on friends and family. P4 and P5 both described their burnout symptoms creeping into interactions with partners at home, with conversations about work stress becoming a distraction. P7 recalled: little things would set me off at home, after Id be at work all day in this stressful environment and family members even expressed that theyd witnessed a change in P7s overall demeanor during the burnout period. Maintaining a work/life balance was also a concern for many participants during burnout experiences. P6 and P3 both described the difficulty of balancing parenting with their jobs. For P6, working long hours took a toll: with the amount of work we do at work, then trying to get off at a decent time to be able to go spend a few hours with my child in day, was just hard. P3 described a similar feeling: By the time I would come home, I would just be so exhausted that I could not give my son the attention he deserved because I just mentally could not OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 45 Potential Patient Care Impacts Nearly every participant who experienced burnout expressed a concern for the potential impacts that burnout may have on the quality of patient care they delivered. This was reported across the board, with each participant voicing an awareness of the focus and precision required to perform the job of a PA, noting that accurate measurements, thorough examinations, and precise dissection have a direct impact on a patients treatment course. P12 acknowledged that you cant do your best if youre overworked and exhausted, and knew that minor mistakes happened during a burnout period, expressing a fear that, at that time, mistakes could have escalated to interfere with patient care. P3 admitted that Im sure it did affect the quality of my work, never purposely cutting corners but if youre tired and stressed and overwhelmed, even the best PA can still not take the perfect section like they normally would at the end of the day, were human. P5 summarized: When youre stressed, something is interfering with your focus, so even if you think youre being focused and meticulous, the stress is distracting you, and I think thats a dangerous situation. Addressing Burnout Aside from the impacts, a portion of the discussion with each participant included conversations about how they have personally addressed burnout, and how they would advise other pathologists assistants who are experiencing burnout. Building self-awareness, learning to set boundaries, and making the decision to leave the job were common elements that arose from this portion of the discussion. Many participants who had been in the field for five or more years described a process in which they grew in self-awareness and the ability to set boundaries and advocate for themselves. P12 described initially being afraid to speak with management about workload issues, adding OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 46 that my improvements were through the communication, advising others dont just put your head down and think you have to get it all done and thats how it is, talk to your management and let them know there is a problem P3 acknowledged that it comes with time, with knowing yourself, the ability to stand your ground and say it [that something is a problem]. P2 also mentioned that as I get older and interact with more people, I see that you dont always listen to those tiny cues youre getting and you really need to just listen to your inner, personal self. P9 described growth after coming through a burnout experience: Im more in tune to my reactions and my inner dialogue like the way I talk to myself and the expectations I put on myself and Im better at setting boundaries. For P4, stress and burnout experiences allowed for the self-awareness to know when a burnout state was approaching: I call it toasty. Its like, Im just feeling toasty, not quite burned out but I can see it happening in the future. Learning how to set boundaries with the job to manage stress and burnout was also a common topic among participants. P2 recommended that if something doesnt seem right, if your body is getting to the point of over exhaustion, listen to your body and know that its okay to set boundaries. P12 pointed out the national work culture that praises overwork and excessive commitment to ones job and affirmed that we have to start putting our foot down and saying this is all I can do and I cant do anymore. P10 added, I would suggest not being idealistic, I would say be realistic and protect yourself, dont push as hard as I did P11 also advised setting boundaries but acknowledged that it would depend on the workplaces responsiveness: If you could set more boundaries with your time, you could negotiate that, but I knew the place I was working, it was not going to be like that. For many in similar positions to that described above by P11, with a workplace not responsive to attempts to set boundaries and take feedback about mitigating stress, the only OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 47 option to address the burnout situation was to leave the job. P3 recalled making that choice and knowing that it was for their own personal health, on a physical, mental, and emotional level. P12 echoed that sentiment: Youve got to do whats best for you- if you have to start looking for another job, then thats what you have to do. P9 acknowledged that, it is scary to start over... but just go for it before its too late and youre so broken that you take all your baggage with you to the next job. P7 added, Id say dont feel stuck if you have the ability to make the change to new circumstances, you owe it to yourself to do it concluding with life is too short to feel that miserable and burned out and injured, its just no way to live. Most of the participants who chose to address burnout by leaving their job had at least three years of experience in the field and left academic and private jobs as well as solo and team jobs at equal rates. Among the participants, many consistent themes and topics arose in relation to occupational stress and burnout, and common issues were identified. Many participants experienced stress due to long hours and heavy workloads in a job that requires precision and focused attention. The physical demands of the job weighed heavily as stressors for many, and most participants voiced a general sense that the expectations in their jobs did not match up with the regard and/or respect they receive. Burnout experiences for participants also revealed common impacts, from physical to interpersonal, and concerns for ones own health and patient safety. Each participant took the time to share thoughtful advice and recommendations that can be used to improve their own future experiences and the future experiences of other PAs. The themes that arose in the process of reviewing and coding the interviews illuminate the complex stress and burnout experiences of working pathologists assistants. OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 48 Discussion This study set out to explore the occupational stress and burnout experiences of pathologists assistants (PAs) and investigate their perceptions of the factors contributing to these experiences. Participants shared their unique duties and responsibilities, highlighting the stress and burnout factors specific to their experiences. Ten of the twelve participants in the sample shared that they had personally felt burnout at some point in their professional careers. Participants shared their accounts and through their descriptions, provided insight into some key factors contributing to occupational stress in this population. Participants shared some personal stress relief strategies and discussed their perceptions of employer-led stress management programming. The study was also able to identify some of the impacts of and concerns surrounding the issue of burnout in PAs. Occupational Stress The key themes that emerged concerning occupational stress were workload, physical demands, interpersonal issues, and lack of respect/understanding. While workload and interpersonal issues are common stressors across professions, participants voiced unique concerns about particular physical demands of the PAs job and the difficulties of working in a little-known field. Among healthcare professionals, workload is a common stressor. Dillon et al. (2019) found that increasing workloads and a culture in medicine focusing on productivity are key stressors contributing to physician burnout. In nursing, work-related stress associated with workload demands, frequently caused by staffing shortages, has significantly impacted burnout (Akkoc et al., 2021). In the ASCP survey of pathologists, 67% of respondents reported job stress due to workload, and 86% reported feeling overwhelmed to some degree by their workload (Garcia et al., 2020). Smith et al. (2022) discovered that a major contributor to stress in medical OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 49 laboratory professionals was increasing work hours due to chronic understaffing. PA participants in this study echoed experiencing this issue, as workload stress often resulted from understaffing in the laboratory. Many participants also expressed that the need for more staff was not adequately addressed by their organizations, similar to frustrations expressed by many in nursing (Akkoc et al., 2021). Some participants also pointed out that the job of a PA is unique in that they are trained to perform many tasks and can serve in many potential roles in a laboratory. These circumstances can result in PAs being spread too thin as overwhelming demands and responsibilities build, increasing stress and potential burnout. A key stressor for PAs in this study was the unique physical element of the work. PAs perform most of their work on the laboratory bench, which can cause problems with basic ergonomics and positioning. In addition, the work is detailed and involves the near-constant use of small, handheld tools like scalpel handles and forceps, which brings its own set of potential overuse injuries and chronic problems. Participants reported neck, back, wrist, hand, and foot issues to varying degrees and described the struggle to mitigate these issues while continuing to work. Many other healthcare professions also have significant physical demands. In a 2021 survey, 97% of nurses reported some work-related pain in the past 12 months (Krishnan et al., 2021). PAs face unique challenges due to continual, repetitive motion and tool use. Surgery involves repetitive, ergonomically challenging physical work with tissue manipulation analogous to that of PAs. Laparoscopic surgery is associated with increased shoulder and neck pain and injury rates in surgeons (Steinhilber et al., 2014). Like in PAs, posture and task-related causes have been noted, with similar motions when switching views from a computer monitor to the specimen/patient and comparable prolonged elevated arm postures leading to biomechanical stress and muscle strain in the shoulder-neck region (Steinhilber et al., 2014, p. 2852). Surgery is OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 50 generally associated with an increased risk of work-related musculoskeletal symptoms, frequently caused by sustained awkward postures (Szeto et al., 2009). Some recommendations for surgeons that could also prove useful for PAs include ergonomically reviewed monitor placement, ergonomically designed tools, and ergonomic workspace assessment (Kranenburg & Gossot, 2004). Interpersonal issues are a common workplace stressor. Workplace relationships have been known to influence job satisfaction and morale (Roeder et al., 2020). For PAs in this study, relationships with supervisors were more common stressors than relationships with coworkers. Two extremes were noted, with managers either causing increased stress via micromanagement or by being absent and indifferent to employee needs. Gilbreath and Benson (2004) found that supervisor behavior significantly impacts employees psychological well-being. A micromanaging supervisor can contribute to low employee morale, high rates of staff turnover, and loss of productivity, and these types of supervisors have been named as one of the top three reasons employees leave a job (Collins & Collins, 2002). Several participants in this study cited their supervisor as the leading cause for their stress and dissatisfaction in a particular workplace, and some indicated that it was their reason for resigning. On the other end of the spectrum, several participants described managers who engaged in a laissez-faire style of leadership, an extremely passive approach in which managers intervene only to correct negative actions and are otherwise largely absent (Silva & Mendis, 2017). Skogstad et al. (2007) found that laissez-faire managers can contribute to frustration and stress among employees and can even lead to increased interpersonal conflict between employees. Several participants in this study expressed frustration associated with having inaccessible managers. Many experienced stress caused by OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 51 their managers lack of effort and support, having to make their own extra efforts just to be seen and heard. Participants discussed feeling a lack of respect and understanding of their role and the field of pathology in general. Pathology is generally lesser known than other medical specialties, likely due in part to the fact that patients rarely visit a pathologist in person. With little exposure to the behind-the-scenes world of a pathology laboratory, there is little awareness of the roles of the professionals in the lab. Smith et al. (2022) described a lack of pathology fluency among the general public and even other healthcare professionals, acknowledging that clinical providers may lose sight of the value of the work performed by pathology professionals (p. 8). For participants in this study, many stressors and frustrations were linked to feeling undervalued and under respected by their hospitals/organizations. Several participants felt that their contributions to patient care were unnoticed and unappreciated by other medical professionals in their organizations. While issues with leadership and organizational culture often contributed to this experience, many participants also felt that there was a connection to the lack of understanding and awareness of the field. In the public realm, efforts to bridge the gap between patients and pathologists have grown recently. The College of American Pathologists (CAP) has published steps for starting a patient-pathologist consultation program, acknowledging the benefit of direct interaction for the patient to understand their diagnosis and the importance of the pathologist on the patient care team (Green, 2019). Booth (2019) affirmed the importance of educating patients and their families directly and adds that social media initiatives have increased the visibility of pathology. For PAs, direct patient interaction is less feasible, as privacy and safety concerns in the laboratory environment preclude patient visits to the lab. Like pathologist-centered initiatives, OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 52 education and advocacy to build awareness of the PA profession are growing. The American Association of Pathologists Assistants (AAPA) has an active marketing and communications committee devoted to advocacy and promotion of the profession. One participant in this study shared an experience in which they provided their organization with an informational profile to be featured on the company intranet, highlighting their unique role in the healthcare system. These efforts to build public awareness of pathologys role in patient care could help PAs get more visibility and might serve to alleviate some of the stress participants associated with the lack of understanding. Participants expressed that if they had some relief from the burden of explaining the importance of their work, they might have better responsiveness from their organizations regarding facility and safety issues and be treated with more respect and given more autonomy by management. Burnout Burnout related themes were physical impacts, emotional and interpersonal impacts, potential patient care impacts, and addressing burnout. Participants described their own experiences with burnout and shared their thoughts on how to address burnout on an individual and organizational level. Of Maslachs three dimensions of burnout, exhaustion is the most predictive of stressrelated health issues (Maslach & Leiter, 2016). Exhaustion has been correlated to physical stress symptoms like headaches, chronic fatigue, muscle tension, hypertension, and sleep disturbances (Maslach & Leiter, 2016). The burnout experiences of participants in this study all included some physical impact, with most expressing issues with fatigue, muscle pain, and general physical tension. Sleep disruptions were also common among participants, with many experiencing severe exhaustion and an inability to get adequate rest. Some participants described OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 53 a frustrating cycle in which they would come home exhausted from a long day at work, then have disrupted sleep, which only made them more overtired at work the next day. Bailey (2006) explains that persistent burnout can lead to vicious cycles in which physiological effects feed back into the brain and body, adding to exhaustion and malaise. Participants in this study also described significant emotional and interpersonal impacts felt during their burnout experiences. Bianchi et al. (2018) described emotional exhaustion related to burnout as a combination of depressive responses, with symptoms like irritability, disengagement, and loss of emotional involvement. Several participants expressed feeling what they thought were close to, if not actual, symptoms of depression, such as self-isolation, a loss of interest in work, and a loss of motivation. Many participants also described becoming more irritable with family and friends, adding that it was challenging to balance their burnout symptoms with maintaining their roles as partners, friends, and parents. Maslach and Leiter (2016) affirm that fewer positive social encounters at and outside of work can feed burnout, with a marked influence on the burnout dimensions of exhaustion, cynicism, and inefficacy. A chief concern for participants who experienced burnout was its potential impact on the patient care they provided. Burnout is associated with an increased risk of major medical errors and poorer overall quality of medical care (Yates, 2020). Hernandez (2018) expressed the belief that burnout is an underrecognized cause of errors in laboratory medicine. PA participants in this study described fears that workload and employer expectations for productivity could push them into a state where errors became more likely. All participants discussed a strong understanding of the significance of their work, noting the weight of knowing that if they were to miss something in a specimen, it could lead to an adverse impact on the patient. The struggle between wanting to provide accurate, thorough patient care and having to meet demands was a common stressor OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 54 among all participants and a contributor to burnout for participants who had the experience. Participants concerns are supported by known biological effects of stress and burnout on the body. Koutsimani (2021) described some of the long-term negative impacts of chronic stress and burnout on the brain, including the destruction of neurons and decreased blood oxygenation. Manifestations of these physiological effects have been observed, with individuals in a burnout state performing poorer than others on cognitive tasks requiring attention and visual/spatial processing and lowered performance in working memory, learning, and episodic memory (Koutsimani, 2021). Participants also shared thoughts and experiences surrounding the topic of addressing burnout. A common stress reducer for participants was spending time with the support systems of friends and family. Several participants also described the benefit of having close relationships with work friends who could relate to their stressors. Positive social relationships have a significant impact on mitigating the effects of burnout, and studies have shown the stressreducing advantages of having friends at work (Maslach & Leiter, 2016). A possible strategy to help mitigate stress and burnout for PAs could be a mentorship program, in which employees are paired with a mentor and positive social interactions are fostered. Jordan et al. (2019) saw that a mentorship program for medical students decreased stress and led to an increased sense of personal accomplishment. Many participants expressed a better ability to manage their stress when working for an organization that allowed or even encouraged flexible scheduling, taking breaks as needed, and a general sense of autonomy. Participants described feeling more respected, having more focus, and feeling less pressure when working for these more flexible organizations. Smith et al. (2022) learned that lack of control and loss of autonomy at work are major drivers of job stress for OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 55 medical laboratory professionals. Several participants expressed these frustrations, particularly due to a lack of control over decisions that impact their work life and environment. PAs may benefit from knowledge about strategies to assert some control over their situations to aid in alleviating some of the impacts of this frustration and stress. van Dorssen-Boog et al. (2021) proposed that healthcare professionals workplace stress management interventions should focus not simply on reducing stress but also on increasing self-leadership. Self-leadership hinges on the belief that people are active agents of their own well-being, performance, and intrinsic motivation, not simply products of their environment and traits (van Dorssen-Boog et al., 2021). Self-leadership positively contributes to engagement and performance at work, and the increased self-efficacy associated with self-leadership has been shown to increase resiliency to workrelated stress and reduce the overall experience of stress (van Dorssen-Boog et al., 2021). Training on self-leadership similar to the intervention utilized by van Dorssen-Boog et al. (2021) to include proactive problem-solving strategies, self-awareness, goal-setting, and constructive thought patterns could be a valuable intervention to build a stress management toolkit in PAs. Self-advocacy on the community level could also be beneficial, with the PA community working to encourage self-leadership, advocate for employee needs and express how meeting these needs is vital to long-term employee retention. Most participants were unaware of any formal stress-management programming at their organization. Of these participants, all expressed that they would be interested in taking advantage of some type of employer-led programming. Of the participants who worked for organizations with stress management programs, only one was able to participate. Participants voiced that many classes took place during work hours and in inconvenient locations, and with the workload in the lab, they could never get away. One participant shared that their organization OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 56 offered online yoga sessions that employees did in their offices and laughed at how unfeasible that would be in the lab. Making stress management available and easily accessible can enhance the benefits of such programming. Bostock et al. (2019) found that using a mindfulness meditation program delivered via a smartphone app led to significant improvements in wellbeing, stress levels, and perceptions of social support at work. Employers can improve their offerings by increasing accessibility to employees in all roles. More recorded sessions or asynchronous programming that employees can pull up on their own and varied timing for employees on different shifts could go a long way. Also, adding access to services that employees can schedule at their convenience, like massage, yoga classes, and meditation sessions, could considerably improve accessibility. Beyond employer-led programming, participants expressed an interest in exploring selfdirected stress-management strategies. Bailey (2006) asserted that the complicated nature of burnout demands multidisciplinary interventions addressing various factors via multiple methods. The American Medical Association has built an interactive multimedia collection of resources on physician and trainee stress and burnout (AMA, n.d.). As part of their Steps Forward initiative, the burnout toolkits and playbooks provide open access to webinars, podcasts, articles, and additional tools and resources to assist physicians in managing stress and creating and fostering a wellness culture in their organizations (AMA, n.d.). Many of the resources are structured modules with quizzes that can be applied for continuing medical education credit, with additional practical resources to guide physicians toward better stress management and burnout prevention. Similar programming specific to PAs could be valuable, such as a free online resource hub with a blend of content created specifically for PAs and content curated from additional sources. Toolkits could include PA-specific yoga poses and OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 57 stretches to mitigate known physical issues from the job, guides for speaking to management about employee needs, and links to webinars and articles that could be consumed on demand. The hub could incorporate input from PAs and include additional tools and resources to guide individuals to more formal help if needed. Study Limitations There are several limitations to this study. Selection bias may have occurred, as those who volunteered for the study might have been attracted to doing so because they had significant personal stress and burnout experiences. Their experiences might not necessarily reflect those of the average PA. The researcher is a practicing pathologists assistant, which introduces the potential for researcher bias. The researcher took steps to mitigate this potential bias at each stage of the study, employing tools like reflective journaling, writing memos, and discussing potential biases with fellow researchers. Another strategy to mitigate potential bias was using an independent coder during data analysis. The researcher also took care to make current coworkers ineligible to participate in the study, eliminating possible biases that might arise from that common ground. Implications for Further Research This study draws further attention to the issues of occupational stress and burnout and how they are experienced by pathologists assistants, professionals in a lesser-known field in healthcare. The 2020 ASCP survey and the 2022 Smith et al. mixed methods survey began to paint a picture of the prevalence of burnout and gather information on major factors contributing to occupational stress in the greater pathology community (Garcia et al., 2020). Keith (2022) also utilized a quantitative approach to assess burnout in the specific population of Canadian pathologists. A quantitative, survey-based study utilizing the Maslach Burnout Inventory and OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 58 focusing solely on pathologists assistants would be a natural next step to this research. More detailed patterns might emerge in this format, possibly illuminating more stressors that can be addressed and possibly illustrating demographic patterns. Additional data could also be valuable for workforce-related decisions that could benefit PAs. Many participants cited work volume as a major stressor, and several voiced difficulties in obtaining and maintaining adequate staffing levels. Keith pointed out that many of these decisions in healthcare are driven by metrics and evidence and expressed a hope that data from additional studies could be helpful for those advocating for additional positions (Newitt, 2022). Additional studies of occupational stress and burnout in PAs could focus on particular subpopulations, such as a study in which veteran and retired PAs share their experiences and a study considering the perspectives of PAs new to the field. This type of study could help identify if there are issues that are universal across the career span and could add to the understanding of effective stress management strategies for PAs. Also, it could give some insight into how graduate programs are working to prepare students for their PA careers, potentially identifying areas for improvement. Studies focusing on some of the particular stressors identified by participants in this research could also prove beneficial. Quantitative data on staffing and workflow concerns specific to PAs could be valuable self-advocacy tools for PAs navigating understaffing or recruitment issues. Additional exploration of the physical impacts of the job could also be a useful direction for future study. A study specifically focused on work-related physical conditions in PAs could yield information on the most common injuries by anatomic distribution, pinpointing specific prevention and mitigation techniques. Conclusion OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 59 Occupational stress and burnout are timely and significant issues for the global workforce and are particularly pronounced for healthcare professionals. This study explored the experiences of occupational stress and burnout in pathologists assistants, a small field of highly trained allied health professionals working behind the scenes in medicine. Stressors experienced by participants, like workload and interpersonal issues, showed some commonality with those expressed in other healthcare professions. This study reveals some stressors more specific to the profession, like the unique physical demands of the work and a lack of understanding of the pathology field. The study also identified the impacts and concerns for pathologists assistants experiencing burnout and provided insight into ways stress management programming could be better tailored to this population. 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International Journal of Environmental Research and Public Health, 17, 1-13. https://doi.org/10.3390/ijerph17186464 Roeder, A. C., Garner, J. T., & Carr, K. (2020). Workplace relationships, stress, and verbal rumination in organizations. Southern Communication Journal, 85(2), 6372. https://doi.org/10.1080/1041794X.2019.1697893 Ryan-Nicholls, K. D. & Will, C. I. (2009). Rigour in qualitative research: Mechanisms for control. Nurse Researcher, 16(3), 70-85. Salvagioni D. A. J., Melanda F. N., Mesas A. E., Gonzalez A. D., Gabani F. L., Andrade S. M. (2017). Physical, psychological and occupational consequences of job burnout: A systematic review of prospective studies. PLoS ONE, 12(10), 1-29. https://doi.org/10.1371/journal. pone.0185781 Schrijver, I. (2016). Pathology in the medical profession? Archives of Pathology & Laboratory Medicine, 140(9), 976982. https://doi.org/10.5858/arpa.2015-0524-RA Silva, D., & Mendis, B. (2017). Relationship between transformational, transaction and laissezfaire leadership styles and employee commitment. European Journal of Business and Management, 9, 13-21. Skogstad, A., Einarsen, S., Torsheim, T., Aasland, M. S., & Hetland, H. (2007). The destructiveness of laissez-faire leadership behavior. Journal of Occupational Health Psychology, 12(1), 80. https://doi.org/10.1037/1076-8998.12.1.80 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 69 Smith, S. M., Liauw, D., Dupee, D., Barbieri, A. L., Olson, K., & Parkash, V. (2022). Burnout and disengagement in pathology: A prepandemic survey of pathologists and laboratory professionals. Archives of Pathology & Laboratory Medicine. Advance online publication. https://doi.org/10.5858/arpa.2022-0073-OA Steinhilber, B., Hoffmann, S., Karlovic, K., Pfeffer, S., Maier, T., Hallasheh, O., Kruck, S., Seibt, R., Rieger, M., Heidingsfeld, M., Feuer, R., Sawodny, O., Rothmund, R., & Sievert, K. D. (2015). 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Zeitschrift fur Gesundheitswissenschaften = Journal of public health, 16. Advance online publication. https://doi.org/10.1007/s10389-020-01313-z Teo, Y. H., Xu, J. T. K., Ho, C., Leong, J. M., Tan, B. K. J., Tan, E. K. H., Goh, W.-A., Neo, E., Chua, J. Y. J., Ng, S. J. Y., Cheong, J. J. Y., Hwang, J. Y.-F., Lim, S. M., Soo, T., Sng, J. G. K., & Yi, S. (2021). Factors associated with self-reported burnout level in allied OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 70 healthcare professionals in a tertiary hospital in Singapore. PloS One, 16(1)e0244338. https://doi.org/10.1371/journal.pone.0244338 van Dorssen-Boog, P., van Vuuren, T., de Jong, J. P., & Veld, M. (2021). Facilitating health care workers' self-determination: The impact of a self-leadership intervention on work engagement, health, and performance. Journal of Occupational and Organizational Psychology, 94(2), 259281. https://doi.org/10.1111/joop.12352 Wild, J., McKinnon, A., Wilkins, A., & Browne, H. (2021). Post-traumatic stress disorder and major depression among frontline healthcare staff working during the COVID-19 pandemic. British Journal of Clinical Psychology,10.1111/bjc.12340. Advance online publication. https://doi.org/10.1111/bjc.12340 Williamson, K., Lank, P. M., Cheema, N., Hartman, N., Lovell, E. O., & Emergency Medicine Education Research Alliance (EMERA) (2018). Comparing the Maslach Burnout Inventory to other well-being instruments in emergency medicine residents. Journal of Graduate Medical Education, 10(5), 532536. https://doi.org/10.4300/JGME-D-1800155.1 Wojnar, D. M. & Swanson, K. M. (2007). Phenomenology: An exploration. Journal of Holistic Nursing, 25(3), 172-180. https://doi.org/10.1177/0898010106295 World Health Organization. (2019, May 28). Burn-out an "occupational phenomenon": International Classification of Diseases. https://www.who.int/news/item/28-05-2019burn-out-an-occupational-phenomenon-international-classification-of-diseases Yates S. W. (2020). Physician stress and burnout. The American Journal of Medicine, 133(2), 160164. https://doi.org/10.1016/j.amjmed.2019.08 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS Figure 1 Theme Map 71 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS Appendix A Recruitment Infographic 72 OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 73 Appendix B Interview Guide Thank you for agreeing to be interviewed today. This interview will be conducted as a part of my doctoral dissertation for the University of Indianapolis Doctor of Health Science program. The responses you provide will be utilized for the purposes of this project only, and your responses will be 100% confidential. Responses will be seen by faculty and research members, but all identifying information will be removed. The aim of this interview is to gain a deeper understanding of the unique experiences pathology professionals have with occupational stress and burnout. The questions will focus mainly on your job, job stress, and your personal experiences managing job stress. The interview will be approximately 30 to 60 minutes long. Your participation is voluntary, and you will have the option to skip any questions that you are not comfortable answering, take breaks at any point, and you can request for the interview to be terminated at any time. Please also know there will be no judgment from me about any of your responses, as the questions are only designed to learn more about your experiences and feelings, and I want you to be able to share openly in a comfortable setting. What questions can I answer for you regarding the interview, how the data will be used, or anything else you might be wondering before we get started? As you know, I will be audio recording our interview. The recording will be deleted after its use for this project and will not be shared. Are you okay with me starting the recording? Interview Questions and Prompts 1. What is your current job role/title? a. What got you interested in the field? OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 74 b. How did you get started in the field? c. How long have you been in the field? In your current role? 2. Can you tell me more about what a typical day looks like for you at work in your current role? a. What are some of the major successes you experience in your work? i. What aspects of your work brings you feelings of fulfillment? b. What are some challenges you face in your role? i. How do these challenges make you feel? 3. How would you describe your stress level at work? a. Can you tell me a little more about why it is [their response]? b. What would you say are the most stressful elements of your job? i. Are there specifics about your job design (i.e. how much autonomy you have, your expected work output) that cause stress? ii. Are there specifics about your work environment (i.e. safety, ergonomics, having the needed supplies) that cause stress? iii. Are there specifics about your interpersonal relationships at work that cause stress? iv. Does your relationship with management/leadership contribute to stress? c. What things at your job/workplace make work less stressful? d. Can you share with me some things you do to manage your stress? At work and outside of work? 4. How does your employer address stress management for employees? a. What do you think has been the impact of [these strategies/the lack of strategies]? OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 75 b. What else could your employer do to alleviate some of your stress at work? c. How do you think your employer would respond if you brought up suggestions about addressing stress management at work? 5. What comes to mind when you think of job burnout? a. How would you personally define burnout? What does burnout mean to you? b. Can you tell me more about why [some element of their answer] is associated with burnout for you? c. How do you feel about burnout in the medical field in general? i. Do you think its a major issue? ii. What are some contributing factors, in your opinion? d. How about in your own pathology colleagues? Do you think burnout has impacted them? 6. Have you ever felt like you personally were experiencing job burnout? a. (If yes) Can you tell me more about what that was like for you? i. What were some of the major contributing factors? ii. What kinds of impacts did it have on you at work? iii. What kinds of impacts did it have on your life outside of work? iv. What did you do to address it and work through it? v. What advice might you have for someone in the middle of the experience? b. (If no) What do you think has contributed to you not having had the experience? i. How do you think you might navigate the experience if it did occur in your job? OCCUPATIONAL STRESS AND BURNOUT IN PATHOLOGISTS ASSISTANTS 76 7. Are there any other thoughts you would like to share? They can be about job stress, burnout, or anything we didnt cover that youd like to add. Thank you so much for your time today. Before we wrap up, I just want to share again that the information shared here today will be kept secure. The audio recording will be stored securely on my personal password-protected computer, and my written notes will be kept in a secure place and will not be shared. Later in the research process, only deidentified data will be shared with research team members, and eventually in my dissertation. This means that youll be assigned a participant ID number, and your name will not be attached to the data in any way. Ill be following up with you via email in the near future to ask you for some additional feedback. In the meantime, if you have any questions or concerns that come up after the interview, please do not hesitate to get in touch, you have my contact information. Thank you again.  ...

... Burnout of Rehabilitation Therapists in Long-Term Care Settings Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Christine Hughes, MSOTR/L Copyright April 20, 2023 By: Christine Hughes, MSOTR/L All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Laura Santurri, PhD, MPH, CPH Committee Member ______________________________ Heidi Ewen, PhD, FGSA, FAGHE Committee Member _____________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ BURNOUT OF REHABILITATION THERAPISTS Burnout of Rehabilitation Therapists in Long-Term Care Settings Christine Hughes Department of Interprofessional Health and Aging Studies, University of Indianapolis 1 BURNOUT OF REHABILITATION THERAPISTS 2 Abstract Background: Given the demands of their profession, burnout among healthcare workers is growing, particularly among long-term care staff, along with physical and emotional repercussions. Research is limited on how rehabilitation therapists (occupational, physical, and speech) perceive and experience burnout in long-term care settings. An in-depth understanding of healthcare professionals' experiences with burnout within long-term care settings is necessary to understand and address burnout. Objective: This study investigated the perceptions and experiences of rehabilitation therapists while working in long-term care settings and the potential for burnout. Method: The researcher utilized a basic interpretive qualitative approach to guide semi-structured, individual interviews with rehabilitation therapists. Interviews were audio recorded, then transcribed verbatim. Along with a second researcher, the data was analyzed through a structured coding process, followed by development of overarching themes. Results: Six themes emerged from the data: causes of stress and burnout, individual ways of managing stress and burnout, systemic changes for managing stress and burnout, COVID-19 and mental health, the definition of burnout, and change over time in work experience. Discussion: Rehabilitation therapists can feel empowered to advocate for themselves to their employers when discussing issues, and employers will see the importance of changing policies to help reduce the prevalence of burnout in therapists and promote systemic changes from within the companies. One universal policy all participants acknowledged was that productivity expectations were unrealistic. Future research, advocacy, and policy should address systemic and organizational factors related to burnout to relieve the related consequences and promote a thriving therapy workforce. Keywords: rehabilitation therapists, burnout, long-term care, memory deficits BURNOUT OF REHABILITATION THERAPISTS 3 Acknowledgments As the end of my time in this program arrives, I have found that there are many people to thank for guiding me in the personal and professional growth I experienced throughout this journey. The completion of this study could not have been possible without the knowledge and expertise of the dissertation committee from the University of Indianapolis; Chair Dr. Lisa Borrero, Analysis Expert Dr. Laura Santurri, and Content Expert Dr. Heidi Ewen. I am forever thankful for their commitment and guidance in this study. I also want to acknowledge the faculty of the University of Indianapolis's Doctor of Health Science program and the Aging Studies program. Throughout this endeavor, they have provided insight and support, which is the baseline of this research. I would also like to thank my husband, Patrick, for all of your love, encouragement, and confidence in me to keep working toward my goal. I appreciate every second you spent listening to me talk about this research for the past four years and the unwavering support you gave every step of the way. I can finally turn my brain off and stop pestering you with grumbles about things you dont entirely understand but always agree with. I am forever grateful to everyone who gave me advice and a supportive ear during this time. With the utmost gratitude, Christine Hughes BURNOUT OF REHABILITATION THERAPISTS 4 Table of Contents Burnout of Rehabilitation Therapists in Long-Term Care Settings ................................................ 1 Abstract ........................................................................................................................................... 2 Acknowledgments........................................................................................................................... 3 Problem Statement ...................................................................................................................... 7 Purpose Statement ....................................................................................................................... 8 Research Question(s) .................................................................................................................. 8 Significance of the Study ............................................................................................................ 8 Definition of Terms..................................................................................................................... 9 Literature Review............................................................................................................................ 9 Burnout ..................................................................................................................................... 10 Burnout in Long-Term Care Settings ....................................................................................... 11 Symptoms of Burnout ............................................................................................................... 12 Therapists and Burnout ............................................................................................................. 12 Coronavirus 2019 (COVID-19) and Burnout ........................................................................... 13 Burnout Relief........................................................................................................................... 14 Summary ................................................................................................................................... 15 Method .......................................................................................................................................... 16 Study Design ............................................................................................................................. 16 Participants ................................................................................................................................ 16 Procedures ................................................................................................................................. 16 Sampling and Recruitment .................................................................................................... 16 Informed Consent.................................................................................................................. 18 Data Collection ..................................................................................................................... 18 Data Management and Analysis ........................................................................................... 19 BURNOUT OF REHABILITATION THERAPISTS 5 Rigor/Trustworthiness............................................................................................................... 20 Results ........................................................................................................................................... 21 Theme 1: Causes of Stress and Burnout ................................................................................... 22 Theme 2: Individual Ways of Managing Stress and Burnout ................................................... 23 Theme 3: Systemic Changes for Managing Stress and Burnout............................................... 24 Theme 4: The Impact of COVID-19 Overall............................................................................ 25 Theme 5: Definition of Burnout ............................................................................................... 27 Theme 6: Change Over Time in Work Experience .................................................................. 28 Discussion & Conclusion.............................................................................................................. 30 Research Question 1 ................................................................................................................. 31 Research Question 2 ................................................................................................................. 33 Study Limitations ...................................................................................................................... 36 Implications for Future Research .............................................................................................. 36 Conclusion ................................................................................................................................ 38 References ..................................................................................................................................... 40 Table 1 .......................................................................................................................................... 49 Table 2 .......................................................................................................................................... 50 Appendix A ................................................................................................................................... 53 Appendix B ................................................................................................................................... 54 Appendix C ................................................................................................................................... 57 BURNOUT OF REHABILITATION THERAPISTS 6 Burnout of Rehabilitation Therapists in Long-Term Care Settings Individuals working in helping professions, such as healthcare professionals, are at greater risk for and more susceptible to developing burnout than non-helping professions (Leonardi et al., 2013), with the most recent Medscape National Physician Burnout and Suicide Report reporting a burnout rate of 43% (De Hery, 2020). Symptoms of burnout include anxiety, irritability, a sense of failure, and depression, all of which affect patient care and interaction with others (Leonardi et al., 2013). It is reported that more than half of United States physicians experience symptoms of burnout, with this number being determined before the COVID-19 pandemic (Dyrbye et al., 2017). However, more research is needed to understand the experiences of other members of healthcare professional teams (Dyrbye et al., 2017). Burnout among nursing and care home staff for older adults is a significant problem worldwide, with repercussions for the well-being of patients, providers, and staff (Harrod & Sulla, 2018). The prevalence of paid caregiver burnout is 50% in geriatric-based facilities (Kandelman et al., 2018), which presents a unique issue for these professionals' health and residents' quality of care. For example, healthcare personnel demonstrating signs of burnout often become desensitized to others (Yldzhan et al., 2019) and develop negative attitudes toward dementia patients for whom they are providing care (Smythe et al., 2020). Furthermore, they are noted as feeling emotionally and physically exhausted with low levels of feelings of personal success within their work (Yldzhan et al., 2019). Additionally, these professionals began to experience the effects of COVID-19 starting in the spring of 2020. Staff in long-term care settings have described working under complex and stressful circumstances during the COVID-19 pandemic, citing fear of bringing the virus home to their family, transmitting the virus to their patients, increased workloads, and increased physical BURNOUT OF REHABILITATION THERAPISTS 7 and emotional burden as some of the reasons for feeling burned out (Prasad et al., 2021; White et al., 2021). These challenges burdened an already struggling workforce and will likely continue contributing to increased burnout and reports of anxiety and depression (Prasad et al., 2021; White et al., 2021). Not only has the current pandemic affected healthcare workers this way, but studies have also found that those with dementia may demonstrate increased adverse behaviors. These behaviors include more anxiety, agitation, and withdrawal due to the stresses of COVID19, resulting from changes in daily routine and the deaths of familiar residents (Kohn et al., 2021). This may, in turn, exacerbate stressors and burdens on healthcare workers in long-term care settings even further (Kohn et al., 2021). Problem Statement An in-depth understanding of healthcare professionals' experiences outside of nursing staff and physicians with burnout within long-term care settings is needed. There is a lack of research on burnout among rehabilitation therapists and their experiences with burnout while working in long-term care with patients with memory deficits. Research is needed to add to the literature to find and support interventions to reduce burnout and job turnover and promote satisfaction within the therapists' role in long-term care. Specifically, there needs to be more research on how physical, occupational, and speech therapy practitioners experience and manage burnout while working in a long-term care setting and with those with memory deficits. Rehabilitation therapists, including physical, occupational, and speech therapists, have essential roles, including modifying diet, addressing cognition, improving functional mobility, and increasing the ease of participation in daily living tasks like toileting and dressing (Developers, 2021; Hatcher, 2023; Hofmann, n.d.). In addition, as the rate of older adults BURNOUT OF REHABILITATION THERAPISTS 8 entering long-term care settings with memory care deficits grows, it is now more crucial to investigate their experiences with burnout to reduce those rates and ensure job satisfaction. Purpose Statement This basic interpretive study aimed to understand healthcare professionals experiences, specifically physical, occupational, and speech therapists (here forward, collectively as rehabilitation therapists), with burnout while working in a long-term care setting with patients with memory care deficits. Research Question(s) How do rehabilitation therapists experience and manage feelings of work-related stress, known as burnout, while working in long-term care facilities? o How has the COVID-19 pandemic changed how rehabilitation therapists felt and managed burnout while working in long-term care facilities? How do rehabilitation therapists define their experiences of work-related stress, known as burnout, while working in long-term care facilities? o To what extent has COVID-19 redefined burnout for rehabilitation therapists in long-term care facilities? Significance of the Study Understanding how rehabilitation therapists experience stress within a long-term care setting will provide insights into burnout and enhance stress management. Implications for this research include creating and tailoring stress management programs for the workplace to reduce stress and prevent burnout in therapists. Workplaces could then provide education on the signs and symptoms of burnout and what to do when feeling these symptoms. This research may aid BURNOUT OF REHABILITATION THERAPISTS 9 rehabilitation therapists and their employers in addressing these symptoms of burnout early on. This allows for continued quality care of their patients. Definition of Terms Burnout: a type of work-related stress that includes a state of physical or emotional exhaustion, a sense of reduced accomplishment, and loss of personal identity (Mayo Clinic Staff, 2021). Health professionals: maintain health using evidence-based medicine and caring principles and procedures. Health professionals diagnose, treat, and prevent illness, injury, and other physical and mental impairments (Geneva, 2013). Long-term care setting: a facility that provides rehabilitative care to patients or residents in need of assistancelong-term care facilities include nursing homes and personal care homes (MedicineNet, 2021). Rehabilitation therapists: these include those who work in long-term care settings, such as speech therapists, occupational therapists, certified occupational therapy assistants, physical therapists, and physical therapist assistants. Literature Review The present study aimed to explore healthcare professional burnout, specifically physical, occupational, and speech therapists (here forward known as rehabilitation therapists for conciseness), in long-term care settings while working with memory care patients. A literature search was completed, which resulted in articles referencing burnout among healthcare professionals working in long-term care with patients with memory care deficits and symptoms of burnout in healthcare professionals and how this affected patient care satisfaction. However, there was limited research on how healthcare professionals can manage their symptoms of BURNOUT OF REHABILITATION THERAPISTS 10 burnout or how to prevent such symptoms from occurring. In addition, this researcher observed that the novel virus, coronavirus 2019 (COVID-19), may contribute to burnout by increasing stress in caring for their patients and concerns about bringing it home to their families (Prasad et al., 2021; White et al., 2021). Burnout Burnout can be defined as a state of physical and emotional exhaustion involving both negative self-worth and a negative attitude toward a person's job (Kim et al., 2020). Like healthcare professionals, those working in helping professions have a greater risk for burnout than non-helping professions (Leonardi et al., 2013). For example, 43%, or one in three, physicians experience burnout, and 31.5% of nurses cite burnout as the reason for leaving their job (Medscape, 2020; Shah et al., 2021). Burnout amongst healthcare professionals is growing, with up to 50% of those represented by paid caregivers, such as certified nursing assistants (C.N.A.s) and nurses in geriatric care facilities, such as long-term care settings (Harrad & Sulla, 2018). Paid caregiver burnout is growing, but it can lead to severe consequences such as the increased risk of neglect, lower quality of care, and increased abuse, particularly in older populations (Harrad & Sulla, 2018; Kandelman et al., 2018). Similarly, healthcare professionals are showing signs of becoming insensitive to others, such as patients and other staff (Yldzhan et al., 2019). This is often referred to as compassion fatigue, which can be defined as a "unique form of burnout that affects people in the caregiving profession" (Joinson, 1992). Compassion fatigue tends to occur in healthcare settings while working with ill and often suffering patients (Polat et al., 2020; Recognising fatigue, 2021). Compassion fatigue, if left unresolved, can lead to burnout, impair healthcare professionals' job performance, and cause them to be less diligent in caring for their patients (Abbaszadeh et al., BURNOUT OF REHABILITATION THERAPISTS 11 2017). Among caregivers, those working with patients with dementia are found to experience a more significant caregiver burden than other caregivers due to the increasing symptoms of the advancing disease, such as behavioral and psychological changes (Hiyoshi-Taniguchi et al., 2018). Burnout in Long-Term Care Settings As is true for other healthcare professionals, those who work in long-term care settings, such as nurses and paid caregivers, experience high levels of burnout and compassion fatigue (Smythe et al., 2020). This can lead to negative attitudes toward those being cared for and the provision of poorer quality care (Smythe et al., 2020). One research study revealed that the risk factors for burnout in healthcare professionals working in long-term care settings are strict institutional protocols, working in a profit-making establishment, and the experience of bullying by a resident (Kandelman et al., 2018). Various disciplines work in this setting, including speech, physical, and occupational therapists, with all types of patients, including those with memory care deficits. Depending on the patient's needs, these therapists address various needs within this environment. The role of an occupational therapist is to help residents develop skills and promote participation in what is known as activities of daily livingself-care tasks such as feeding or dressing (Hofmann, n.d.). Physical therapists work on building strength and endurance, improving flexibility, enhancing coordination, and promoting mobility (Hatcher, 2020). Speech therapists' role includes compensatory strategies for independence during eating and swallowing, diet changes to avoid aspiration, and assessing and training mental status for orientation to surroundings (Developers, 2021). Indeed, being intimately involved in these critical roles with patients with memory deficits happens daily in long-term care settings. BURNOUT OF REHABILITATION THERAPISTS 12 Symptoms of Burnout Apathy is healthcare professionals' most prevalent symptom of burnout, followed by irritability, anxiety, mood disorders, insomnia, a sense of failure, disillusionment, and depression (Hiyoshi-Taniguchi et al., 2018; Leonardi et al., 2013). These professionals reported feeling emotionally and physically exhausted and having low personal success in their work (Yldzhan et al., 2019). Furthermore, research has found relationships between the feelings of burden and burnout and a caregiver's lack of free personal time, the hours they devote to patient care, the number of years spent in patient care, and the progression of patients' cognitive deficits (Pudelewicz et al., 2019). Personal health issues that have been shown to accompany burnout include high cholesterol, type 2 diabetes, hospitalization due to cardiovascular diseases, and increased risk of developing musculoskeletal pain, headaches, gastrointestinal issues, and respiratory problems (Salvagioni et al., 2017). Some variables affecting rehabilitation therapists and their feelings of burnout include the inability to detach from work during out-of-work hours, low salary satisfaction, and perceived work overload (Poulsen et al., 2014). Therapists and Burnout Physical, speech, and occupational therapists are at high risk of burnout, which is associated with decreased job satisfaction, increased medical errors, and decreased well-being in healthcare professionals (Kim et al., 2020). Larger facility sizes, caregiver gender (women), and younger age (20-30 years old) were identified as major contributing factors affecting burnout symptoms among therapists in these professions (Kim et al., 2020). Therapists are in daily contact with patients' physical and emotional pain as they assist patients with working through various levels of disability (Kim et al., 2020). In addition, a lack of personal achievement or feeling of meaning in their job was reported (Leonardi et al., 2013). Therapists were noted to BURNOUT OF REHABILITATION THERAPISTS 13 have high levels of emotional exhaustion, high levels of cynicism, and low professional efficacy. Reasons leading to such experiences included excessive demands, conflict, and lack of autonomy and respect for their profession (Gupta et al., 2012) Therapists within the Katsiana study were found to have moderately high levels of burnout, with some having no psychological resilience to these feelings of burnout (Katsiana et al., 2021). This means that therapists struggle to cope with and manage feelings of burnout caused by their jobs. Having no psychological resilience means they have a more challenging time adapting to difficult conditions or trauma in the workplace (Katsiana et al., 2021). Psychological resilience positively adapts to adversity, complex conditions, or trauma (Luthar, 2015). Therapists have been found to have high levels of emotional exhaustion and perceptions that their work is not always respected by others (Brito-Marcelino et al., 2020). Reasons why therapists' burnout has increased include work overload, poor pay, role conflict, and inadequate resources (Evanson, 2003). Coronavirus 2019 (COVID-19) and Burnout During the COVID-19 pandemic, more healthcare workers faced (and are still facing) life-threatening situations, virus exposure, and other major changes in work responsibilities and organization (Leo et al., 2021). In recent research studies, healthcare professionals in long-term care settings during the beginning of COVID-19 noted increased feelings of stress and overall physical and emotional burdens on an already strained staff (Prasad et al., 2021; White et al., 2021). An additional study found that half of the healthcare worker participants experienced burnout in some sense during the COVID-19 pandemic (Ghahramani et al., 2021). During the outbreak, a high incidence of anxiety and depression was reported (Leo et al., 2021). Healthcare professionals' overall emotional and physical well-being plays an important BURNOUT OF REHABILITATION THERAPISTS 14 role in containing the pandemic (Ghahramani et al., 2021). This means that employees may feel exhausted emotionally, have negative attitudes while working and treating patients, and have difficulty carrying out tasks pertinent to their role (Ghahramani et al., 2021). An effect of burnout on employees is a lower quality of the healthcare systems, poor communication, medical errors, and patient outcomes and safety (Leo et al., 2021). The current pandemic affected patients in long-term care settings with memory deficits, such as Alzheimer's disease or dementia, demonstrated by increased adverse behaviors (Kohn et al., 2021). These behaviors include increased anxiety and agitation, thus increasing the caregiving demands of healthcare workers (Kohn et al., 2021). Burnout Relief Researchers have found that emotion-focused coping strategies, including acceptance or positive re-interpretation of a situation, have been associated with lower burden levels (Lloyd et al., 2019). Specifically, the use of self-compassion among staff demonstrated positive outcomes in attitude and their well-being with said staff members (Lloyd et al., 2019). Staff with selfcompassion have better caregiver outcomes, including better quality care and a more positive attitude toward the residents (Lloyd et al., 2019). Self-compassion is defined as being understanding toward oneself when one suffers or fails (Neff, 2020). One strategy to help with burnout was allowing caregivers to engage in regular leisure tasks (Kendelman et al., 2018). Other ways in which burnout can be relieved and increase job satisfaction are greater autonomy in their position, the ability to contribute to decision-making, and improved workplace orientation (Aloisio et al., 2018). Having interdisciplinary staff support groups designed to prevent energy depletion and allow employees to feel valued was also shown to reduce feelings of stress or burnout BURNOUT OF REHABILITATION THERAPISTS 15 (Kandelman et al., 2018). A study by Uyar et al. (2019) found that providing education and counseling to caregivers helped to decrease their distress. Similarly, another study demonstrated that staff members' perceived support from their colleagues protects them against feelings of burnout and stress (Costello et al., 2019). This same study found that the more staff perceived that their facility's leadership was adequate, the more they felt they were protected against feelings of burnout and stress (Costello et al., 2019). Evanson (2003) also noted that increased communication from leaders to the employees, improved organizational policies that positively affect a work-life balance, and stress management techniques like education on stress could aid in the reduction of burnout. Other ways therapists manage their burnout better include spending time with family, maintaining a work-life balance, improving control of work-related responsibilities, maintaining a sense of humor, and self-awareness/self-monitoring of emotions (Gupta et al., 2012). Summary Overall, a limited amount is known about burnout in occupational, physical, and speech therapists who work in long-term care. Specifically, only a small amount is known about burnout in these therapists. Such therapists need to be aware of the experiences of burnout and look toward developing coping mechanisms and strategies to combat, manage, and reduce the rates of burnout within these professions. Further qualitative research that delves into the therapist's perspective of burnout in long-term care must be pursued to understand better and maintain the level of professionals within the long-term care setting. The qualitative approach of this study will result in in-depth information about how care and burnout are perceived, experienced, and managed. The researcher of this current study will utilize a basic interpretive approach to answer BURNOUT OF REHABILITATION THERAPISTS 16 the research question: How do occupational, physical, and speech therapists experience stress while caring for those with memory care deficits in long-term care settings? Method Study Design A basic interpretive qualitative methodology was used to understand the experiences of rehabilitation therapists with burnout while working in a long-term care setting with patients with memory care deficits. A basic interpretive approach is used to understand how people make meaning of their experiences (Merriam, 2002), making it an appropriate design for this study. The study began after the researcher received Institutional Review Board approval from the University of Indianapolis. Participants For inclusion in this research study, participants must have been currently employed in a long-term care setting, such as a skilled nursing facility or an assisted living facility, and worked as a rehabilitation therapist, such as a physical therapy practitioner, speech therapist, or occupational therapy practitioner. Procedures Sampling and Recruitment The researcher utilized a purposeful sampling strategy for participant selection. A sample, when chosen purposefully, allows for the strategic selection of the participants to inform an understanding of the stated research problem (Palinkas et al., 2015). Specifically, maximum variation sampling was used whereby the researcher sampled from various long-term care sites, looking for an equal number of rehabilitation therapists across occupational, speech, and physical therapies (Patton, 1990). To this end, the researcher recruited participants from various long-term BURNOUT OF REHABILITATION THERAPISTS 17 care facilities and disciplines by approaching therapists from social media groups on Facebook specific to those working in long-term care settings. Recruitment via social media involved posting a recruitment post that included information about the study and the researcher's phone number and email address for them to contact the researcher if interested (see Appendix A). This information sheet also included confidentiality procedures, potential benefits and risks, statements about the voluntary nature of the study, and the fact that they could withdraw their consent at any time. When an individual contacted the researcher about the study, they were reminded about the studys purpose, participation requirements, and methods to protect participant confidentiality. Participants were also told about the time commitment expected and the methods through which the researcher will collect and analyze the data. Individuals who expressed interest in participating were then emailed the study information sheet (Appendix B), so they could review it before agreeing and scheduling the interview. Also, in this email communication, participants were asked to share information about the study with other rehabilitation therapists they knew and met the inclusion criteria. The interviews were scheduled with those who agreed to participate in the study based on availability. The interviews were held via telephone to reduce the risk of COVID-19 virus exposure due to the researcher's and participants' employment in a long-term care setting. The sample size was determined using information power, which examines sample adequacy, the study aim, data quality, and variability of relevant events to gauge the number of participants needed (Malterud et al., 2016). This study had a narrow study aim, and the sample the researcher sought was dense (highly specific), requiring fewer participants to achieve information power (Malterud et al., 2016). A cross-case analysis strategy was utilized because the researcher was BURNOUT OF REHABILITATION THERAPISTS 18 looking to examine the experiences with stress and burnout across the different disciplines and make recommendations for preventing and managing stress in the work environment (Malterud et al., 2016). Based on information power, an appropriate range of participants was approximately 10-15, allowing for various long-term care settings and ensuring all three disciplines are represented in the therapists' agreeing to participate. Informed Consent Informed consent was obtained verbally from each participant after reviewing the study information sheet and scheduling the interviews. Consent was also reaffirmed before beginning each interview. During the consent process, the researcher reviewed the study information sheet with each participant to ensure their understanding. Specifically, the participants were told about the study's purpose, their expectations regarding the interview process and member checking, the potential benefits and risks, and the methods by which confidentiality will be maintained. The participants were also informed that the interviews would be audio-recorded. Finally, the researcher informed the participants that they could ask questions at any point, decline to answer any question the researcher asked, and withdraw from the study at any time without penalty. Data Collection The researcher conducted individual, semi-structured interviews about rehabilitation therapists' experiences and perceptions of stress and burnout while working with individuals with memory care deficits in a long-term care setting. Memoing was utilized from the beginning of the data collection to examine the researcher's thoughts about the data, including how the themes are coming together and how the patterns are developing (Birks et al., 2008). The memoing process helped clarify thinking on a research topic by examining one's thoughts about the data. It allows for articulating assumptions and perspectives to develop themes (Birks et al., 2008). A BURNOUT OF REHABILITATION THERAPISTS 19 semi-structured interview guide developed by the researcher was used during the interviews (see Appendix C). The questions guided the conversation versus reading each question directly. Prompting and follow-up questions were used to probe further based on the participants' responses. After reestablishing informed consent, the interview questions began with a broad question about the topic, with prompting and follow-up questions thereafter. The interview continued, with each question becoming more detailed about the participants' experiences and feelings, building on one another. Interviews were recorded using a Voice Recorder application on the researcher's password-protected MacBook and their password-protected iPad to ensure no data was lost due to technology failure. Interviews took between 30-55 minutes, depending on the participants' responses. Each interview concluded once all the interview guide questions had been asked and answered, and the participants had no other questions or comments to contribute. Data Management and Analysis Audio recordings from the interviews were transcribed using Temi, an online transcription service. Specifically, the researcher used Temi's audio-to-text service, cleaning up and de-identifying each transcript before downloading it using identification numbers instead of participant names to protect privacy. Each transcript was saved in an encrypted space on the researcher's Google Drive in a transcript-specific folder and deleted once the research was completed. The interview recordings are stored on the Voice Recorder application on the MacBook, the password-protected Temi website, and Dedoose version 9.0.85, a qualitative data analysis web application that is also password-protected. The data analysis process began with the researcher reviewing each transcript multiple times to immerse herself in the data, which occurred throughout the data collection and analysis process. The researcher then began coding BURNOUT OF REHABILITATION THERAPISTS 20 by reviewing the interview transcripts again, line-by-line, highlighting relevant words, phrases, or segments of data relevant to the research question and assigning them a label (Creswell & Poth, 2018). During this process, the researcher worked with a second researcher with expertise in qualitative research to aid in the data analysis. The primary researcher took a transcript, coded it independently, then compared the codes with the second, outside researcher. The analysis expert of this dissertation served as the second researcher. They coded one transcript with the researcher to develop the foundational codebook. The analysis expert was engaged throughout the process as the external auditor. Upon completing this step, the researcher created a codebook to document the codes developed. The researcher reviewed the codes again to make adjustments as needed. Then, the researcher grouped the codes into categories before creating the theme table. The table included quotes illustrative of each theme and its location in the data (Creswell & Poth, 2018). The researcher then conducted member checking to seek participant feedback on the themes found from interpreting the data to ensure an accurate representation of their experiences. The researcher asked that the participants provide their feedback within one week via email. The researcher made any necessary adjustments based on their feedback. Rigor/Trustworthiness Trustworthiness, or the study's rigor, was established by including strategies that support credibility, transferability, dependability, and confirmability (Connelly, 2016; Henderson & Rheault, 2004). Credibility, or confidence in the study, was maintained through reflexivity, triangulation, and member checking (Connelly, 2016; Henderson & Rheault, 2004). Triangulation, in which credibility is supported by involving other researchers to verify the results (Henderson & Rheault, 2004), was incorporated by engaging an experienced qualitative BURNOUT OF REHABILITATION THERAPISTS 21 researcher throughout data analysis. Member checking occurred at the end of the data analysis portion by making the transcript and theme identification available for review, once completed, by the participants (Henderson & Rheault, 2004). Transferability, or the process of ensuring the results can be applied to rehabilitation therapists and other healthcare professionals who work in long-term care, was supported by ensuring that relevant peers find meaning in the results and associate the results with their own experiences (Cope, 2013; Korstjens & Moser, 2017). In doing so, the researcher provided a detailed description of the sample of participants and contextual information about their experiences. This increased the likelihood that the results could be applied to a similar group of people in similar circumstances. During each interview, probing questions provided detailed insight to answer the research question. Dependability, the stability of findings over time, and confirmability, the degree that other researchers confirm the findings, were supported using triangulation, reflexive analysis, external auditing, and a code-recode procedure (Henderson & Rheault, 2004; Korstjens & Moser, 2017). The researcher used reflexive analysis via journaling about their potential biases. Another outside researcher did an external audit to see if they came to the same conclusion as the first researcher after studying the same data. Code-recoding is when the researcher codes some data, waits, recodes, and compares the results found (Henderson & Rheault, 2004). The analysis expert of the dissertation served as the second coder and external auditor and stayed in contact periodically with the researcher to review the analysis, determined the need for any modifications to the codebook, and aided in the initial development of themes. Results Sixteen participants were interviewed for this study. All participants were therapists who had worked or were currently working in a long-term care setting. The sample consisted of BURNOUT OF REHABILITATION THERAPISTS 22 speech therapists, occupational therapists, occupational therapy assistants, physical therapists, and physical therapist assistants. The longevity of their career as therapists ranged from one year to 27 years. See Table 1 for the demographic data. Six significant themes (Table 2) emerged from the interviews that created a picture of the therapists' experiences in long-term care: causes of stress and burnout, individual ways of managing stress and burnout, systemic changes for managing stress and burnout, COVID-19 and mental health, the definition of burnout, and change over time in work experience. Theme 1: Causes of Stress and Burnout Participants expressed their frustrations throughout the interviews about the causes of their stress and burnout while working in long-term care. The situations that caused stress and burnout varied and included delivering the news that a patient is recommended to remain in the long-term care facility, patient deaths, and productivity standards. Participant 1 talked about being the "bad guys" because the therapists often have to determine when the patient is not safe to go home. Participant 6 also talked about unsupportive family members and that the therapists then said the patient could not go home because the family could not provide care. Participant 1 also spoke about the death of the patients in this setting, noting that "you need to be prepared when you work in long-term care because you are at these people's end of life, but it still hits you hard." Participant 13 spoke about patient death: "sometimes the deathdepending on your personality, it can affect you." Productivity standards are something that a therapy company uses to measure billable treatment time against time in the facility on a typical eight-hour day (480 minutes). This standard expectation varies from company to company, but the usual range, as noted by interviewees, was 80% to 93%. This means that of 480 total minutes in the facility, a therapist BURNOUT OF REHABILITATION THERAPISTS 23 must have 384 to 446 minutes that are billable to a patient's insurance. Many participants spoke during interviews about how this is their number one cause of stress in their working environment. For instance, participants 2 and 5 reflected on how all expectations forced upon them make it difficult to focus on actual patient care. Participant 2 stated, "The productivity of the therapistand all of the metrics they force on you is hard, and it's sort of gotten so far away from patient care," while participant 5 noted, "there are some days when everybody's call light is going offand I am torn between, do I just stick to my job and get my productivity or do I stop and help this person." Additionally, participant 9 expressed that everything in their day would need to run perfectly to meet their required productivity without doing anything that "could be considered questionable [fraudulent] or not skilled [not billable]." One participant, 11, raised concerns about how such high productivity standards could be achievable and how these expectations are undoubtedly linked to fraud. Participant 14 related it to feeling like a machine: "We are not machines that can go at the same speed every day the spreadsheet, by money counters are controlling it." In participant 1's facility, each set of staff has its own standards related to patient care and productivity, leaving participant 1 to feel as if they are at odds with the nursing staff or social services staff; "that disconnect of us versus them, the facility staff versus therapy staff and getting staff to understand because like the nursing staff doesn't have a productivity standard; they have their patients." Theme 2: Individual Ways of Managing Stress and Burnout Individual strategies for managing stress and burnout were an emphasis within the interview questions. Eight participants mentioned that having other rehabilitation therapists to talk to was helpful because they [the other therapists] would understand. Other coping BURNOUT OF REHABILITATION THERAPISTS 24 mechanisms were more straightforward; Participant 5 mentioned that they drink alcoholic beverages to cope, and participants 6 and 10 said they rely on mental health therapy and antidepressants to make it through. Four participants spoke about time off to cope and clear their heads. Participants 1, 4, and 6 stated that they exercise to relieve some of their stress. On the other hand, participant 1 also said that sometimes, they "shove it [stress] down and keep going because I have to." Participant 8 said they often try changing jobs to alleviate stress, which "hasn't been super successful." Participant 10 talked about how they tried to change their perspective, "I had to remind myself that these are not only my friends, but they are my coworkers. I had to remind myself that I support myself and love these patients; they still need help." Theme 3: Systemic Changes for Managing Stress and Burnout Participants' thoughts about how burnout and stress for therapists could better be managed through systemic changes developed as a theme throughout the interviews. Many participants mentioned wanting recognition for their work, to be acknowledged by their company/corporate/director, and improved communication from their company. Participants 16 and 2 suggested more open communication between the employees (the therapists) and upper management to know that the employees' concerns are heard and that changes are discussed before implementation. An idea expressed by participant 2 was to "humanize some of these changes and give you [the employees] a chance to talk it out. Or if you would feel that somebody would listen to you, care what you have to say." Many participants also brought up increased pay/raises for and autonomy of the therapists. Participant 6 was frank in that they felt they "needed to be paid more overall" and that improved autonomy and recognition from upper management would alleviate the burnout. BURNOUT OF REHABILITATION THERAPISTS 25 Participant 9 recognized that this work may be more stressful but that a "significant pay raise would make it feel like the hard work is appropriately compensated." Many of the participants also went back and spoke about productivity standards in the workplace. They collectively felt that removing these expectations would improve the quality of care and reduce burnout among the therapists. The participants echoed one another in that being able to provide the treatment that is appropriate for the patients in the time that is deemed appropriate by them, the therapists, would result in better patient care and reduced stress and burnout in the therapists. Participant 3 thought, "well, I think productivity needs to go out the window. That would be the number one thing because you should be able to go in, do what the patient needs, and not worry about hitting a certain number." Participant 5 added that: At least for me, having that human element where you can sit with the patient. If they're saying, "I need to go to the bathroom," instead of saying, "hit your call bell, and I'll be back, bye," you can actually take the time to sit there and help them and do things like we used to do, or "my sock is crooked, could you take my sock off and put it back on?" Instead of me being like, that's not billable for me. It will affect my productivity. Theme 4: The Impact of COVID-19 Overall Participants clarified that the COVID-19 pandemic changed their work in long-term care settings. A number of the participants spoke about the impact of the death toll of the residents and patients they had known for years. Participant 2 talked about how seeing the patients they had known for years die suddenly and, with no emotional support, they felt overwhelmed, "you were seeing patients that you knew for many years, and of the few long-term residents we had, we lost 50 [died of COVID-19]. So that alone and without emotional supporteverybody was sad. Everybody was overwhelmed." Participant 5 touched on watching BURNOUT OF REHABILITATION THERAPISTS 26 COVID sweep through their building and seeing "halls full of people you love diein a short period." They also said they were used to losing people, used to dying, but not to that extent, not that amount at once. Participant 6 related COVID-19 to being in hell: "At the end of 2020, like October, November when it was starting to hit us, and then starting to see people getting sick and dying. I was in hell, and like there's no other way to describe it." Participants also reflected on how COVID-19 affected their coping mechanisms. Participant 8 said, "but it took away all of our ways outside of work to decompress 'cause you're not allowed to go anywhere or do anything." Three participants also noted how COVID affected staffing within the already struggling settings. Comments were made about how they [therapists] were regaled as heroes during COVID, though now there is a crisis because there has been no reprieve from issues before COVID-19. For example, participant 13 said, "There are many people who have been in it for so long, and they don't feel like they are heard, and nothing is being done about it. We had that whole, like "you guys are heroes, you're doing a fantastic job," and now there is such a staffing crisis." Participants described that the shortage of nurses and certified nursing assistants had put more burden on therapists to provide services outside their true scope of practice. Participant 2 talked about the shortage, "We're just continuing through the motions without any break in the action because now there is no staff, no CNAs. There's nobody." Participant 10 spoke about how they are doing work that's not their job and is not billable, but they are still expected to do it. Participant 16 brought up how working with COVID patients affected their work/life situation: BURNOUT OF REHABILITATION THERAPISTS 27 A big slap in the face was being mandated to work with COVID patients. And then, when you tested positive for COVID and did not get paid, you had to use your PTO. That was definitely a big contributor to the burnout. I had two COVID "vacations" that way. Participant 1 touched on pandemic fatigue and how trying to stay healthy and clean was straining: I did what a lot of healthcare workers did or tried. I basically lived away from my family. I was in a completely separate room. I did not touch the stuff they touched. I came home. I showered immediately after I got home from work. I did not wear the same clothes to work as I did coming out. And I worked long hours and stuff like that. And I mean, it was hard. And I mean, everyone's going through pandemic fatigue. Theme 5: Definition of Burnout The impact working in long-term care had on each participant was evident throughout the interviews. Within these accounts, each participant defined what burnout meant to them. Participant 1 said, "I think of frustration and exhaustion, and it's not just physical; it's mental and emotional more than anything." Participant 3's definition was, "I guess like just done with it, over with it, like needing a break. But when you go back, it will be the same." One familiar note in many was the dread of going to work. Participant 11 said, "I think of dreading going to work. I think of wondering how you're going to make it through the day. Sometimes it can feel like there is no escape." Participant 5 talked about their inability to "pour from their pitcher." I think of those days when I wake up and don't even want to get out of bed because I know I've got to go to work. If I'm the pitcher pouring out the water, there are just days when I'm burned out; my pitcher is empty. I don't have any to pour from. BURNOUT OF REHABILITATION THERAPISTS 28 Participants 9 and 14 described their feelings of burnout as stress, fatigue or not being engaged, not having any passion, just sucking it up, and no longer feeling that they can do that or that that was valued. They described dread and feeling like they could not escape. Deep feelings of trauma felt by participant 16 reflected how burnout made her think: I've never been in the service, but it might be a little bit of how people feel after a war. Like those people I went through that with, there's a different level of connection. Theme 6: Change Over Time in Work Experience Along with discussing burnout and stress, most participants wanted to discuss changes in their work experience. Many spoke about the types of patients they work with, but several described expectations set upon them by their companies and how it has changed over their years of working. Participant 2 said that over her 27 years of experience, things changed from when there were no restrictions to the amount of therapy you could provide to a patient. In contrast, now the companies have much more regimented allotments. They went on to explain how there was not the kind of "pressure" put on therapists back when they started; the pressure now is to see them [the patients] for as short of a time as possible and get them in and out as quickly as possible. Participant 5 made similar remarks, noting that, over the past few years, there has been a shift in how care is delivered, "from person-centered care to minutes-centered careand it's just gone from being able to make judgments about when you need to spend more time on something to just being very regimented." Some participants also reflected on how other healthcare professionals no longer valued their clinical therapist experience. Participant 6 said, "I think it's that lack of autonomy; treated as cogs in a machine or as robots, we are dehumanized." Participant 16 told the researcher how they BURNOUT OF REHABILITATION THERAPISTS 29 have felt stripped of their skill as a therapist in the last few years, such as having a minimal say in everything from the plan of care to the discharge plan. Participant 16 revealed how they no longer felt respected by other healthcare professionals, "because I feel like it used to be 15, 20 years ago, we were very respected. Physicians respected us. Nurses respected us." Participant 6 stated they felt that their educational background was no longer a symbol of status; "[I] feel like they [upper management and other professionals] really don't respect our authorities as professionals with higher degrees. Like I have a master's degree." Not all work experiences the participants spoke about have been entirely unpleasant. One participant talked about how rewarding it was to work in long-term care because they were with the residents during the sunset of their life. Becoming the residents' form of family and comfort and the closeness with other staff was a strong sub-theme throughout various interviews. Two participants talked about how they became like family with their fellow staff and residents and how rewarding it is to ground someone and calm them down. Participant 5 said, "There's a lot of good things too, where I get to know the people well. I know the residents, I know the staff, and there's been good opportunities to sort of make friendships and good rapport with people." Participant 11 mentioned, "a lot of times you become these people's family members and give them a lot of that emotional support and can kind of be someone who helps to calm them down or somebody helps to kind of ground them." Additionally, participants spoke about their perception of their work environment changing from schooling to their first days to now. Participant 14 brought up advocacy and how they felt they were "constantly battling for people's quality of life and rights; so much more of it is advocacy than I realized it would be." Participant 11 brought up the recent reimbursement BURNOUT OF REHABILITATION THERAPISTS 30 changes and that the therapy setting is bleak, such as pay cuts for the therapists and reduced treatment time with the patients, "And sometimes it feels like the whole therapy setting, the outlook is very bleak with the assistant [pay] cuts and just general changes in reimbursement and PDPM, sometimes it can just feel very daunting." Two participants spoke about professional organizations, like the American Occupational Therapy Association (AOTA) and the American Physical Therapy Association (APTA), and how they do not feel supported by these organizations. Participant 12 said that professional organizations must stand up and advocate for therapists against predatory employers and insurance companies. They mention that even other clinicians and administrators are not standing up for the therapy profession and are succumbing to the pressure to accept that it is just the way it is now. Participant 12 said they had even reported to AOTA their concern about fraudulent billing practices. Because they were not members of the organization, they [AOTA] did not want to speak to them. Though the participant interviews were conducted one-on-one, the results demonstrated consistency between the therapists regarding their perception of stress, burnout, COVID-19, coping mechanisms, and work experience. The themes identified throughout the coding process create a particular picture of the experiences these therapists have had during their careers. Discussion & Conclusion Rehabilitation therapists include physical, occupational, and speech therapists and assistants for this study. Because of the nature of the job and the level of clinical skill required, rehabilitation therapists commonly find themselves experiencing feelings of stress and workrelated stress, known as burnout (Mayo Clinic Staff, 2021). While it is considered that stress that can be managed or enhances one's functioning is defined as good stress (or "eustress"), there is also stress that cannot be addressed or cannot be resolved through coping mechanisms or BURNOUT OF REHABILITATION THERAPISTS 31 adaption; this is considered bad stress (known as distress) (Anjum & Zhao, 2022; Selye, 1975). This study sought to look at burnout in rehabilitation therapists who work in long-term care. Research Question 1 This research study aimed to answer four questions. The first question was to determine how rehabilitation therapists experience and manage feelings of work-related stress, known as burnout, while working in long-term care facilities. Participants referred to their burnout experience in situations such as poor communication between other staff and employers, staffing issues affecting patient care, and feelings of underappreciation or lack of advocacy by their employers. These experiences are consistent with the literature, which found that if staff perceived their leadership to be adequate, the more they felt they were protected against feelings of burnout (Costello et al., 2019). Evanson (2003) also noted that increased communication from leadership to the employees and improved organizational policies that positively affect a worklife balance aid in the reduction of burnout. The research discusses that employers/companies that aim to build bonds among their employees lead to increased collaboration and responsiveness, ensuring their organization's success (Anjum & Zhao, 2022). Suggestions by participants about ways to make a bond and establish support for employees included an overarching theme of communication. Examples of communication to increase support included having the therapists' voices and concerns heard by their employer and allowing for staff input on changes for each building instead of blanket changes. Other suggestions provided by the participants in this study include bringing in a lecturer of the therapists' choice, counseling those affected by burnout, recognizing the work and successes within the department, and offering stress-reducing activities that acknowledge the therapists' feelings of burnout. BURNOUT OF REHABILITATION THERAPISTS 32 The two most prevalent experiences related to burnout throughout the study were unrealistic productivity standards and the death of their patients. Consistent with the literature, it was found that many skilled nursing facilities (SNFs) see these relationships as functional or transactional and fail to acknowledge the grief that results when residents die (Harrad & Sulla, 2018). The failure to recognize these relationships may impede therapists from effectively moving through the grief process (Harrad & Sulla, 2018). It would be advantageous for facilities and companies to address this phenomenon to reduce burnout from this specific instance. All 16 participants in the study widely noted unrealistic productivity expectations of the employers. Berry et al. (2022) found that those with any productivity standard had lower job satisfaction and satisfaction regarding the nature of work. Tammany et al. (2019) completed a study on productivity expectations and unethical behaviors and found that productivity goals in rehabilitation practice are related to the rate of unethical behavior observed. Those in the study mentioned above who worked in skilled nursing facility (SNF) settings reported higher frequencies of observing unethical behaviors (Tammany et al., 2019), which resounded in these participants' feelings of productivity creating unethical workplaces. Participants spoke about managing these feelings by venting frustrations to co-workers, taking personal time off, meditating, drinking alcohol, and doing mental health therapy. Concerning individual manners of managing, many participants brought up ways that policy could be changed to reduce or control feelings of burnout. The secondary question examined how the COVID-19 pandemic changed how rehabilitation therapists felt and managed burnout while working in long-term care facilities. Participants mentioned that they could not do what they preferred to manage their burnout, such as dance class, gym, or socializing with friends because of COVID. Overall, it did not appear BURNOUT OF REHABILITATION THERAPISTS 33 that COVID-19 changed how therapists felt about burnout, but more so exacerbated the feelings from pre-pandemic. Research Question 2 The second research question was to determine how rehabilitation therapists define their experiences of work-related stress, known as burnout, while working in long-term care facilities. Participants described their burnout experiences as being physically, mentally, and emotionally exhausted, run-down, over-tired, and having feelings of dread. These findings validated the prior research regarding burnout symptoms felt among healthcare professionals. For instance, the signs of burnout in previous research (Hiyoshi-Taniguchi et al., 2018; Leonardi et al., 2013) are echoed in this current study; participants in this study felt anxious, depressed, and irritable, and some had insomnia. The burnout symptoms noted in this research do not differ from other health professionals, making the treatment of burnout applicable to them if the appropriate steps are taken by all involved. Additionally, the participants in this study described emotional exhaustion, feeling cynical, and lack of professional autonomy. This aligns with prior research by Gupta et al. (2012) that noted therapists with high levels of emotional exhaustion, high levels of cynicism, and low professional efficacy was caused by excessive demands by employers, conflict, and lack of autonomy and respect for their profession. The secondary question concerned how COVID-19 has redefined burnout while working in long-term care facilities for rehabilitation therapists. After carefully reviewing the data, COVID-19 did not redefine burnout for the current study's therapists working in long-term care facilities. It did, however, add another layer of burnout for reasons such as increased personal protective equipment (PPE) to manage, constantly changing rules about infection control, being mandated to work with COVID-19 patients, worrying about bringing COVID-19 home to their BURNOUT OF REHABILITATION THERAPISTS 34 families, and sharp increases in death of their patients. The participants in the study discussed how COVID-19 added a layer to the feelings of burnout that already existed, which agrees with prior research on other healthcare professionals from 2019 to 2021 that noted increased feelings of stress brought on by fear of bringing the virus home to their family, giving the virus to their patients, and overall physical and emotional burdens (Prasad et al., 2021; White et al., 2021). It is the responsibility of the employers, the long-term care facilities themselves, and the national and state-level professional organizations to address the different needs and situations of the therapists to promote successful performance in the work environment and reduce employee burnout. Appropriate efforts should be in place to cultivate effective coping mechanisms for work-related stress. Current evidence-based, pre-pandemic techniques that effectively relieve burnout within the workplace include various ideas, for example, using emotion-focused coping strategies, which include acceptance or positive re-interpretation, or cognitive reframing to change the perspective of a situation (Lloyd et al., 2019). These strategies can be implemented in the workplace during staff meetings, when discussing a difficult situation with a patient, their coworkers, and superiors. Burnout can be relieved while increasing job satisfaction by providing therapists greater autonomy and the ability to contribute to decision-making (Aloisio et al., 2018). Creating interdisciplinary staff support groups allows the employees to feel and reduce feelings of burnout (Kandelman et al., 2018). A study by Uyar et al. (2019) found that providing education and counseling to caregivers in long-term care settings helped to decrease their distress. Some findings within the literature discussed various ways in which burnout could be prevented or remedied. One finding notes that income satisfaction was protective against burnout (Shin et al., 2022), which correlates to the feelings expressed by participants' in the current study BURNOUT OF REHABILITATION THERAPISTS 35 about not being paid enough for their work. Professional associations, mentors, and educators may help therapy practitioners advocate for appropriate salaries to prevent or reduce burnout. Shin and colleagues (2022) also noted that having higher levels of supervisor support for the therapists and therapists themselves having higher educational status (doctorate, master's degree) protected against burnout. The current study supported Shin's findings about higher levels of supervisor support, given that most participants in this study expressed that having increased support from their employers/supervisors would decrease their work stress and burnout. Regarding higher level of education and burnout, the participants in this study had various levels of education, including doctorate, masters, and associates degrees, and all reported similar feelings and experiences of burnout, which did not support Shins findings that higher levels of education protect against burnout. Although there is no universal solution to ensure therapist success, understanding what the therapists are experiencing will provide insight to inform the development of best strategies for burnout relief. Regarding the current study, if the therapists can engage with their employers about their feelings or concerns before they are burnt out, they may be more inclined to adhere to the policies and procedures when they feel advocated for and heard. The lack of existing research on burnout in rehabilitation therapists limits the ability of current employees and companies to identify early symptoms of burnout, understand how to manage it, and acknowledge the need for change. Burnout can significantly affect the quality and effectiveness of the care provided by therapy practitioners, and it can have profound implications for practitioners, clients, and healthcare organizations (Shin et al., 2022). Most participants noted that their employers were either unaware of the burnout felt by the participants or did not care, as evidenced by the BURNOUT OF REHABILITATION THERAPISTS 36 increased push in productivity expectations and reluctance to approve paid time off before and throughout COVID-19 and beyond. Overall, frustration, exhaustion, and disappointment from the lack of resources offered by employers and little to no understanding from their employers left all participants in this study searching for answers on how to reduce levels of burnout. Study Limitations Limitations exist in this study. The primary researcher was an occupational therapist who experienced burnout in the long-term care setting. With this in mind, researcher triangulation and memoing were used to address potential researcher bias during data collection and analysis. Using maximum variation and snowball sampling, the goal was to recruit a wide variety of participants who could contribute information from various experiences. Ultimately, the sample included few speech therapists, as only one participated, and more may have offered different insights into their experiences. Selection bias may have affected the study results. Specifically, the therapists who volunteered to participate in the interviews may have had strong opinions on the subject matter due to personal experience. Another potential limitation is that the interviews were conducted via telephone, reducing social interaction and visual communication between the participants and the researcher. Implications for Future Research Despite the limitations, the findings from this study have implications for rehabilitation therapists, rehabilitation therapy companies, and professional organizations. After reading and realizing others feel the same, rehabilitation therapists may feel empowered to advocate for themselves to their employers when discussing issues or concerns. After reflecting on this study, employers may also see the importance of changing their policies to help reduce the prevalence of burnout in these therapists and promote systemic changes from within the companies. BURNOUT OF REHABILITATION THERAPISTS 37 Changes to policy regarding time off for mental health days are encouraged, as only two participants spoke about mental health days. Alternately, the rest of the participants talked about the frustrations they felt that PTO was not typically encouraged or that they needed to make up their time off. Future research into burnout in rehabilitation therapists is needed to expand on the themes found in this study. Including more therapists would allow for a deeper exploration of the phenomenon explored in this study and the use of standardized burnout and stress assessments to quantitatively track the burnout levels in therapists that work in long-term care. Another possible area of research is the concept of rehabilitation therapy companies' expectations of the therapists and the potential for drastically overhauling the policies and procedures to benefit the company, the therapists, and the patients by providing better resources. One universal rehabilitation policy all participants in this study acknowledged was that the productivity expectations were unrealistic. Productivity standards are a metric that a therapy company uses to measure billable treatment time against time in the facility on a typical eighthour day (480 minutes). This standard expectation varies from company to company, but the usual range, as noted by interviewees, was 80% to 93%. This means that of 480 total minutes in the facility, a therapist must have 384 to 446 minutes that are billable and documented to a patient's insurance. Therapists felt that with these expectations, patient care suffered. Support from the administration that could help with this issue includes having therapists, instead of corporate staff, determining the appropriate treatment time, as well as allowing for individualized treatment time for each patient. Another way administration could affect productivity standards is by eliminating the standards altogether. Having to count each minute in the day has proved to be stress-inducing for the participants interviewed, and being able to provide the care, treatment, BURNOUT OF REHABILITATION THERAPISTS 38 and any other day-to-day that go into working in long-term care facilities without being concerned about hitting a specific number would ensure patient care is effectively met. For example, one participant spoke about the pressure of a patient asking for help (needing to use the bathroom, needing water) and feeling like they cannot help that patient because it is not something in their plan of care, thus not billable, thus affecting their productivity if they do it. Another participant mentioned that if they talk to nursing about the patient, need to call the family, or attend a care meeting; these tasks are all non-billable and nonproductive time. While non-productive time is "built" into every day, circumstances may affect the overall productivity of said therapist, causing disciplinary action to occur. Additional studies could address these unrealistic expectations and find ways to remedy this. Companies should evaluate policies regarding productivity requirements to ensure adequate levels of employee job satisfaction are maintained and to improve employee recruitment and retention. Participants related these feelings of frustration with productivity expectations toward unethical behaviors. Broad intervention approaches addressing factors could reduce burnout among rehabilitation therapists in the United States. Future research, advocacy, and policy should address systemic and organizational factors related to burnout to relieve the related consequences and promote a thriving therapy workforce. In summary, action steps taken based on the responses from this study can be used by therapists, rehabilitation companies, and professional organizations to form cohesive and standard policies and improve overall patient care and therapist performance through radical changes. Conclusion Burnout in rehabilitation therapists is a real problem many long-term care workers face. Evidence-based strategies must be implemented aimed at reducing the likelihood of burnout. BURNOUT OF REHABILITATION THERAPISTS 39 More specifically, employers should look to understand the sources of stress from the workforce's perception and be proactive in tackling it in collaboration with their staff. Patient care and self-care may prove more complicated when therapists cannot manage their stressors caused by work experiences. This study provides insight that for therapists experiencing burnout, the ability to engage in stress-relieving activities or communicate concerns with their employers is essential for providing quality patient care. It is not only the employer's responsibility to deliver that ability but also the responsibility of the therapists to take an active role in advocating for improved working situations. 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Community Mental Health Journal, 55(2), 304310. https://doi.org/10.1007/s10597-018-0276-2 48 BURNOUT OF REHABILITATION THERAPISTS 49 Table 1 Participant Demographics Participant Number Job Years of Experience 1 Physical Therapist Assistant 5 2 Occupational Therapist 27 3 Physical Therapist Assistant 26 4 Certified Occupational 5 Therapy Assistant 5 Speech Therapist 10 6 Occupational Therapist 13 7 Certified Occupational 26 Therapy Assistant 8 Physical Therapist 9 9 Physical Therapist 13 10 Occupational Therapist 5 11 Physical Therapist 4 12 Occupational Therapist 20 13 Physical Therapist Assistant 7 14 Occupational Therapist 5 15 Occupational Therapist 16 16 Occupational Therapist 22 BURNOUT OF REHABILITATION THERAPISTS Table 2 Themes Theme Causes of Stress and Burnout Example quotes "I mean, we have to be the bad guys sometimes that says, no, you can't go home anymore. No, you can't go back and live with your family because your family can't take care of you. (Participant 1) "you need to be prepared when you work in long-term care because you are at these people's end of life, but it still hits you hard sometimes [when the patients die]. (Participant 1) Theme Individual Ways of Managing Stress and Burnout [regarding productivity standards] it just sort of feels like you're just being whipped and just being like run faster, run faster, run faster until you just can't run anymore. (Participant 5) Example quotes I run, I drink [alcohol], we [the therapists] vent to each other. (Participant 1) When I feel burned out, I request a day off, whether it's just an extra day so I have a three-day weekend to destress or clear my head. It could be like going for a walk. (Participant 4) Theme Systemic Changes for Managing Stress and Burnout I've also tried meditation, but really some of the best things that help are just sleeping and hanging out with friends. I used to have hobbies, but now I have kids, like playing with kids, going on play dates, and doing things that fill me back up if possible. And, therapy and antidepressants. (Participant 5) Example quotes But having more realistic expectations of what the therapist can do within a time period would be a deciding factor because I hear about all these people that are doing, co-treat like treating three people at a time and doing all this stuff. And no matter how well scheduled, there's only so much you can do, and having these high productivity standards where you feel like a machine, just putting stuff out, makes it hard. (Participant 5) Much of it goes back to what I was saying earlier: we need appropriate autonomy and recognition from the 50 BURNOUT OF REHABILITATION THERAPISTS people above us. Frankly, we need to get paid more. (Participant 6) Theme The Impact of COVID-19 Overall I think preventing burnout with a significant pay raise that, knowing that you're getting into the trenches and it's gonna be really hard every day. But knowing that you're getting a higher pay rate than other settings in the therapy world would be beneficial. It's almost like you're choosing the hard thing to do with somewhat of a payout, that I think feeling more compensated for how hard you work. (Participant 9) Example quotes I mean, I did what many healthcare workers did or tried. I basically lived away from my family. I was in a completely separate room. I did not touch the stuff they touched. I came home. I showered immediately after I got home from work. I did not wear the same clothes to work as I did coming out. And I worked long hours and stuff like that. And I mean, it was hard. And I mean, everyone's going through pandemic fatigue. (Participant 1) you were seeing patients that you knew for many years. Of the few long-term residents we had, we lost 50. So, alone and without emotional support, everybody was sad. Everybody was overwhelmed. (Participant 2) At the end of 2020, like October, November when it was really starting to hit us and then starting to see people really getting sick and dying. I was in hell, and like there's no other way to describe it (Participant 6) Theme Definition of Burnout but it took away all of our ways outside of work to decompress cause you're not allowed to go anywhere or do anything. (Participant 8) Example quotes I think of those days when I wake up and don't want to get out of bed because I know I've gotta go to work. If I'm the pitcher pouring out the water, there are just days when I'm burned out; my pitcher is empty. I don't have any to pour from. (Participant 5) The first thing that comes to my mind is stress, fatigue or not engaged, not having any passion, really just kind of sucking it up or getting through each day that you've tried previously so hard and worked so hard and no longer feel 51 BURNOUT OF REHABILITATION THERAPISTS that you can do that or that that was valued. (Participant 9) I think of dreading going to work. I think of wondering how you're gonna make it through the day. Sometimes it can feel like there is no escape, or you have to escape if that means quitting and finding somewhere else. Just knowing that you can't go on for so much longer and like something will have to, for one reason or another. (Participant 11) Theme Changes Over Time in Work Experience I've never been in the service, but it may be how people feel during a war. Like those people that I went through that with are, there's just like a different kind of level of connection. (Participant 16) Example quotes [with PDPM] there's no room for an individualized treatment plan. It's just here; this is the number of minutes you can see them. (Participant 2) There's a lot of good things to it where I get to know the people really, really well. I know the residents, I know the staff, there's a lot of carryover, and there have been good opportunities to make friendships and rapport with people. (Participant 5) I think it's that lack of autonomy. Literally treated as cogs in a machine or as robots, we are dehumanized, and that's a strong word to use, but I absolutely a hundred percent stand behind using it. It was dehumanizing, and not just because of COVID. (Participant 6) Our professional organizations are not asking these questions. They're not standing up for us. We have other clinicians working for people like Navi health, who are just buying into the system. We have administrators telling us this is how it is to get used to it. Everybody is coming at us. This is how it is. Get used to it. I feel like nobody wants to hear my voice. Nobody wants to know the reality of it. And nobody's like advocating for us. And I'm really disappointed in AOTA, APTA. (Participant 16) 52 BURNOUT OF REHABILITATION THERAPISTS 53 Appendix A Recruitment Post on Social Media Hello! My name is Christine Hughes and I am conducting a research study for the University of Indianapolis in Indiana. My dissertation is on burnout in occupational, physical, and speech therapists who work in long-term care settings. I am looking to recruit physical, occupational, and speech therapists that currently work in long-term care settings (such as skilled nursing facilities or personal care/assisted living settings). There are no significant risks to participating and no direct benefits of participation. Upon completion of the study, whomever participated will be gifted a $10 Starbucks gift card. The commitment will be a 30-60-minute-long interview via Zoom or FaceTime as well as a follow-up email communication approximately 2-3 months after the interview to verify study themes. If this is something that interests you or if you know someone that may be interested, please message me via email tietsworthc@uindy.edu or Facebook messenger so I can go over my study in more detail. This research project has been approved by the University of Indianapolis Institutional Review Board (IRB). Approval date 3/14/22 Approval number 01615. Thank you! Christine BURNOUT OF REHABILITATION THERAPISTS 54 Appendix B Study Information Sheet Minimal Risk UIndy Study # 01615 Study Version: 1 Study Version Date: 3/14/22 Informed Consent Form (ICF) Version: 1 ICF Version Date: 3/14/22 Department of Interprofessional Health and Aging Studies KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS Consent is being sought for a research study and participation is voluntary. The purpose of this study is to understand the experiences of healthcare professionals, specifically those who are physical, occupational, and speech therapists (here forward known collectively as rehabilitation therapists), of burnout while working in a long-term care setting with patients who have memory care deficits. The expected duration s 30-60 minutes of virtual interview time coupled with a follow-up email communication to verify study themes 2-3 months post-interview. A potential risk is psychological risk is stress due to participation and discussion of experiences. There are no direct benefits for participation in this study. CONSENT TO PARTICIPATE IN RESEARCH STUDY Burnout of Rehabilitation Therapists in Long-Term Care Settings Study Principal Investigator (PI): Lisa Borrero, PhD UIndy Email: borrerol@uindy.edu UIndy Telephone: 317-791-5944 Lisa Borrero, from the Department of Interprofessional Health and Aging Studies at the University of Indianapolis (UIndy) and Christine Hughes MSOT, OTR/L are conducting a research study. You were selected as a possible participant in this study because you are currently employed in a long-term care setting, such as a skilled nursing facility or an assisted living facility; work as a rehabilitation therapist, such as a physical therapy practitioner, speech therapist, or occupational therapy practitioner; and work with patients who have memory care deficits. Your participation in this research study is voluntary. Why is this study being done? The purpose of this study is to understand the experiences of healthcare professionals, specifically those who are physical, occupational, and speech therapists, of burnout while working in a long-term care setting with patients who have memory care deficits. BURNOUT OF REHABILITATION THERAPISTS 55 What will happen if I take part in this research study? If you volunteer to participate in this study, the researcher will ask you to do the following: Participate in a 30-60 minute virtual interview (via Zoom or Facetime) with the researcher, which will be audio recorded. Interview questions will be open-ended and will allow for a semi-structured discussion of the participants experiences and feelings. Participate in a follow-up email communication approximately 2-3 months after the interview to clarify and discuss the researchers interpretations of the themes drawn from the initial interview. How long will I be in the research study? Participation in the virtual interview will last approximately 30-60 minutes. Participants will also engage in a follow-up email communication approximately 2-3 months after the interview that involves verification of interview themes. Are there any potential risks or discomforts that I can expect from this study? Although there are no anticipated risks for participation in this study, you may feel emotional or experience psychological distress when considering some of the interview questions. However, you may skip any interview questions or terminate the interview at any time, for any reason. Are there any potential benefits if I participate? You will not directly benefit from your participation in the research. Will I be paid for participating? You will receive at $10 Starbucks gift card sent via email after your participation is completed. Will information about me and my participation be kept confidential? The results of this study may be published in a scholarly book or journal, presented at professional conferences or used for teaching purposes. However, only aggregate data will be used. Personal identifiers will not be used in any publication, presentation or teaching materials. Your responses to this interview will be anonymous. Every effort will be made by the researcher to preserve your confidentiality including the following: Assigning code names/numbers for participants that will be used on all research notes and documents. Keeping notes, interview transcriptions, and any other identifying participant information in a password-protected MacBook in the personal possession of the researcher. BURNOUT OF REHABILITATION THERAPISTS 56 Participant data will be kept confidential except in cases where the researcher is legally obligated to report specific incidents. These incidents include, but may not be limited to, incidents of abuse and suicide risk. Will the data from my study be used in the future for other studies? Your data will not be used or distributed for future research studies even if there is no way for your data to be linked with any information that could identify you. Will my data be shared in any other way? Your data will not be shared in any other way. What are my rights if I take part in this study? You can choose whether or not you want to be in this study, and you may withdraw your consent and discontinue participation at any time. Whatever decision you make, there will be no penalty to you, and no loss of benefits to which you were otherwise entitled. You may refuse to answer any question/s that you do not want to answer and still remain in the study. Who can I contact if I have questions about this study? The Research Team: If you have any questions, comments or concerns about the research, you can talk to the one of the researchers. Please contact: Christine Hughes at tietsworthc@uindy.edu or Lisa Borrero at borrerol@uindy.edu. The Director of the Human Research Protections Program (HRPP): If you have questions about your rights as a research participant, or you have concerns or suggestions and you want to talk to someone other than the researchers, you may contact the Director of the Human Research Protections Program, by either emailing hrpp@uindy.edu or calling 1 (317) 781-5774 or 1 (800) 232-8634 ext. 5774. You will be given a copy of this information to keep for your records. You do not need to sign this, or any other document to indicate your consent. Participation in the interview indicates that you are willing to participate. BURNOUT OF REHABILITATION THERAPISTS 57 Appendix C Interview Guide Introductory Paragraph Thank you for agreeing to be interviewed for this study. This interview is being conducted to meet the requirements of my dissertation research study at the University of Indianapolis. As such, the results of this interview will be disseminated via my dissertation manuscript, a class project. This study aims to investigate rehabilitation therapists experience managing stress while working in a long-term care setting with patients with memory deficits. The questions you will be asked today will focus on your experiences with direct provision of care in the long-term care (nursing home, skilled nursing facility) setting. The questions will focus on the knowledge and management of stress associated with working with patients with memory deficits. There are no known risks associated with this study. The expected benefits of the study are the potential to understand rehabilitation therapists experience with stress, investigate how to manage stress, and reduce the risk of potential burnout. The interview should take between 30 and 60 minutes, and all information discussed in the interview will remain confidential, meaning your name, credentials, and place of work will not be associated with the research findings. Please know that you may stop the interview at any time to ask questions or clarify content. You may also skip any question that you are not comfortable answering. Do you have any questions before we begin? If you agree, today's interview will be recorded, allowing me to capture everything said. Can I start the recording? Interview Questions 1. What has it been like working in a long-term care setting for you so far in your career? BURNOUT OF REHABILITATION THERAPISTS o 58 Can you elaborate on your experiences? 2. What are the types of patients you work with in this setting? o Can you describe your experience working with patients with memory care deficits, like dementia and Alzheimer's disease? 1. How do you feel about working with such patients? 2. What is your approach to working with those with memory deficits in long-term care? 3. Tell me a little more about your role at the facility. o What are some challenges and successes you have faced within your work? 1. How do you handle or cope with challenges or unexpected changes as you encounter them? 4. I want to get more specific now. What does your day-to-day look like while at work? 5. Can you tell me about stressful situations or patient experiences while working in a long-term care setting? o Given the experience(s) you described above, what do you think about the experience of stress in long-term care settings? 1. Do you feel you also experienced stress while working with patients with memory deficits? 2. If so, could you elaborate? 6. What do you think of when you hear the word burnout? o To what extent might you have experienced the feeling of burnout? o How have you dealt with the feeling of burnout? BURNOUT OF REHABILITATION THERAPISTS 7. 59 What do you think about burnout concerning working in long-term care and with those who have memory care deficits? 8. How do you feel burnout could be prevented or better managed for therapists in longterm care settings working with those with memory care deficits? Your interview data will be managed by recording the interview on the Voice Recorder app on my password-protected MacBook laptop. The interview will then be transcribed via a Temi app and stored on my MacBook laptop. All interviews will remain stored this way during data collection, analysis, and dissemination, and once the final project is complete, they will be erased from the computer's hard drive. Every person's interview will be assigned a numeric identification code in place of their name to protect their identities.  ...

... x Lived Experiences of Optimal Aging in Older African American Women Living with HIV Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Valencia N. Cotchery, MPA Copyright April 20, 2023 By: Valencia N. Cotchery, MPA All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ______________________________ Lisa Borrero, PhD Committee Member ______________________________ Tamara L. Wolske, MS, MPhil, CPG, CSA Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 1 Lived Experiences of Optimal Aging in Older African American Women Living with HIV Valencia Cotchery Department of Interprofessional Health & Aging Studies, University of Indianapolis Author Note I have no known conflict of interest to disclose. Correspondence concerning this article should be addressed to Valencia Cotchery, University of Indianapolis, 1400 E. Hanna Avenue, Indianapolis, IN 46227. Email cotcheryv@uindy.edu AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 2 Abstract Background: HIV remains a significant public health concern for African American women. Despite successful linkage to HIV care, self-management of HIV is still difficult for older African American women due to co-occurring factors, such as gender, financial insecurity, race, societal expectations, and HIV-related stigma. Few studies have explored optimal aging from the perspective of older African American women with HIV. Purpose: This qualitative phenomenological study aimed to examine the meaning of optimal aging among African American women 50 and older with HIV in the Southern United States. The study's primary focus was understanding how older African American women with HIV viewed optimal aging across physical, cognitive, emotional, social, and spiritual domains. Method: Ten participants meeting the inclusion criteria were recruited through snowball sampling. Semi-structured interviews explored how African American women 50 and older in the Southern United States viewed optimal aging while living with HIV. Using Colaizzi's descriptive phenomenological method, data were analyzed to describe how participants perceived optimal aging with HIV. Results: Seven major themes resulted from the data, including taking responsibility for your health, feeling and looking younger than your actual age, being in your right mind, being kept by God, social connectedness and support, keeping yourself up and adjusting to your new normal. Discussion: Providing culturally appropriate HIV care and support services tailored to the unique needs of older African American women with HIV in the Southern United States could improve their self-efficacy, improve their chances of experiencing optimal, and enhance their perception of optimal aging. Keywords: African American women, HIV, optimal aging AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 3 Acknowledgments My first thanks go to God for giving me the strength to continue this journey. I am grateful to my daughter Dajah for loving, supporting, caring, and encouraging me. It is because of Dajah that I never gave up. I love you, Dajah and the world is so fortunate to have you in it. I want to thank my mom Mary for making many sacrifices for me. Everything you taught made me the woman I am today, and I will always love you. A special thanks to my sister Valyndra; I love you and appreciate you for helping me in any way you could. Celeste, Celeen, and Sariyah thank you for being such a big part of my life. My dear cousin Joanna, thank you for always being there for me. Your love and motivation are greatly appreciated. Bronze, Krystle, Meisha, and Jam, with friends such as you, I felt I could accomplish anything. Your contributions to my success at the University of Indianapolis are greatly appreciated. In gratitude, I extend my sincere thanks to Tony Walker. I would not be where I am today without you. With you and your connections, my recruitment efforts were possible. Thanks to all the women who shared their stories with me. I could not have accomplished this goal without their openness and courage. They will always be my heroes. My committee members deserve special and heightened thanks. Dr. Borrero, Dr. Santurri, and Professor Wolske, please accept my heartfelt appreciation and thanks. Working with each of you was a pleasure, and I appreciate your professionalism, knowledge, and commitment to your students. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 4 Table of Contents Title Page ........................................................................................................................................1 Abstract ...........................................................................................................................................2 Acknowledgements ........................................................................................................................3 Chapter 1: Introduction ................................................................................................................8 Background ..................................................................................................................................8 Problem Statement .......................................................................................................................8 Purpose Statement ........................................................................................................................9 Research Questions ......................................................................................................................9 Significance of the Study ...........................................................................................................10 Definition of Terms ....................................................................................................................10 Chapter 2: Literature Review .....................................................................................................10 Human Immunodeficiency Virus ...............................................................................................10 Missed Opportunities for HIV Diagnosis in Older Adults ........................................................11 Aging with HIV ..........................................................................................................................12 HIV in Women ...........................................................................................................................14 HIV in African American Women .............................................................................................14 HIV in Older African American Women ...................................................................................16 HIV in the Southern United States .............................................................................................17 HIV Treatment Adherence and Social Connectedness ..............................................................18 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 5 Resilience, Social Support, and Religion ...................................................................................20 Optimal Aging ............................................................................................................................21 Prior Research ............................................................................................................................23 Chapter 3: Method .......................................................................................................................23 Study Design ..............................................................................................................................23 Participants .................................................................................................................................24 Procedures ..................................................................................................................................25 Sampling and Recruitment .....................................................................................................25 Informed Consent ...................................................................................................................27 Data Collection Process ..........................................................................................................27 Data Management and Analysis ............................................................................................30 Rigor and Trustworthiness .........................................................................................................34 Chapter 4: Results........................................................................................................................35 Theme 1: Staying Healthy With HIV-Taking Responsibility for Your Health ......................36 Undetectable Viral Load.........................................................................................................36 Adhering to HIV Treatment Regimens ..................................................................................37 Autonomy in Healthcare Decisions38 Theme 2: Feeling and Looking Younger Than Your Actual Age ..............................................39 Self-Perception .......................................................................................................................40 Functional Ability...................................................................................................................41 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 6 Theme 3: Being in Your Right Mind ......................................................................................43 Self-Acceptance ......................................................................................................................43 Optimistic Attitude .................................................................................................................44 Mental Strength ......................................................................................................................46 Theme 4: Social Connectedness and Support ............................................................................47 Family and Friend Support .....................................................................................................47 HIV Disclosure and Non-Disclosure ......................................................................................48 Participating in Constructive Activities..................................................................................49 Theme 5: Keeping Yourself Up .................................................................................................50 Physical Appearance and Good Hygiene ...............................................................................51 Diet and Exercise ....................................................................................................................52 Continuing to Establish Life Goals and Doing Things That Make You Happy ....................52 Theme 6: Being Kept By God ................................................................................................53 Spirituality ..............................................................................................................................54 Faith ........................................................................................................................................54 Theme 7: Adjusting to Your New Normal .................................................................................55 Coping and Adaptability Through Loving Yourself ..............................................................56 Externalized and Internalized HIV-Related Stigma ...............................................................57 Chapter 5: Discussion and Conclusion ......................................................................................59 Staying Healthy With HIV-Taking Responsibility for Your Health ......................................59 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 7 Feeling and Looking Younger Than Your Actual Age .............................................................62 Being in Your Right Mind .....................................................................................................63 Social Connectedness and Support ...........................................................................................65 Keeping Yourself Up .................................................................................................................68 Being Kept By God ................................................................................................................69 Adjusting to Your New Normal .................................................................................................71 Limitations .................................................................................................................................73 Implications for Practice and Future Research ..........................................................................73 Conclusion ..................................................................................................................................75 References .....................................................................................................................................77 Table 1 Participant Characteristics ...........................................................................................92 Table 2 Themes & Example Quotes ...........................................................................................93 Figure 1 Visual Representation of Themes................................................................................94 Appendix A Notification of Exemption Determination ............................................................95 Appendix B Recruitment Message for Social Media ................................................................96 Appendix C Study Information Sheet ........................................................................................97 Appendix D Study Recruitment Flyer .....................................................................................100 Appendix E Demographic and Background Information......................................................101 Appendix F Semi-Structured Interview Guide .......................................................................102 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 8 Perceptions of Optimal Aging in Older African American Women Living with HIV The advancements in HIV treatment and care have allowed African American women diagnosed with HIV to live longer lives (Warren-Jeanpiere et al., 2014). Nevertheless, HIV remains a significant public health concern for African American women (Peltzer et al., 2017). In the United States, African American women account for a large portion of new HIV diagnoses (58% in 2018) and the most considerable portion of women living with HIV (59.2% in 2017) (Centers for Disease Control and Prevention [CDC], 2019a; Kaiser Family Foundation [KFF], 2020). Additionally, African American women in the Southern United States are disproportionately impacted by HIV, accounting for 67% of all HIV diagnoses among women in the region in 2017 (CDC, 2019b). Furthermore, African American women 50 and older are disproportionately affected by HIV (Smith & Larson, 2015). There were 56,607 African American women aged 50-64 living with a diagnosed HIV infection in 2018, as opposed to 20,164 Hispanic/Latino women and 17,328 White women of the same age group (CDC, 2020d). After successfully connecting to HIV care, African American women with HIV remained at risk of HIV-related adverse health outcomes (Fletcher et al., 2016). Older African American women diagnosed with HIV may face additional challenges as they try to self-manage their infection (Warren-Jeanpiere et al., 2014). Often, their challenges are exacerbated by factors such as gender, poverty, race, social roles, and HIV-related stigma (Warren-Jeanpiere et al., 2014). These unique challenges may negatively impact their ability to experience optimal aging, which encompasses several ways to age well despite having a disease (Aldwin et al., 2018). Problem Statement Several factors influence older HIV-positive individuals' quality of life and longevity (Adam et al., 2018). Older adults with HIV have been described as "underserved, unseen, and AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 9 unheard," a description that is even more prevalent among older women with HIV (Durvasula, 2014). African American women disproportionally affected by HIV are among the "underserved, unseen, and unheard." Adam et al. (2018) revealed that for older women with HIV/AIDS, patient-centered approaches should be used to manage HIV and comorbid conditions. Patientcentered approaches should include individualized quality-of-life considerations and behavioral and social interventions that reflect patient goals (Adam et al., 2018). The US healthcare system does not support a comprehensive model that can tailor care to older women with HIV/AIDS (Adam et al., 2018). Despite the growing number of HIV-positive African American women 50 and older, few studies have explored optimal aging from their perspective. For those providing HIV care and treatment services to older African American women with HIV in the Southern United States, it is imperative to understand the facilitators and challenges of experiencing optimal aging from their perspective. Purpose Statement This study explored the meaning of optimal aging among African American women 50 and older with HIV in the Southern United States. The perceptions of optimal aging were of specific focus across the physical, functional, cognitive, emotional, social, and spiritual domains. Research Questions This study addressed the following primary and sub-question: What does it mean to experience optimal aging among African American women 50 and older living with HIV in the Southern United States? o What are the challenges and facilitators to achieving optimal aging across the physical, functional, cognitive, emotional, social, and spiritual domains? AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 10 Significance of the Study By acknowledging the unique experiences of older African American women diagnosed with HIV, HIV care and treatment providers can modify, restructure, or improve HIV care and treatment services (Warren-Jeanpiere et al., 2017). Furthermore, this study will provide older African American women with HIV with strategies that facilitate optimal aging. Definition of Terms Optimal aging- the capacity to function across many domainsphysical, functional, cognitive, emotional, social, and spiritualto ones satisfaction and despite ones medical conditions (Bowling Green State University, n.d.) Successful aging- the absence of disease and disability; high cognitive and physical functioning; and active engagement with life (Bowling Green State University, n.d.) Literature Review Human Immunodeficiency Virus Human immunodeficiency virus (HIV) is a virus that weakens the body's defense against certain infections, resulting in greater susceptibility to disease (World Health Organization [WHO], 2020). HIV can be transmitted through direct contact with bodily fluids such as blood, semen, vaginal secretions, and breast milk (WHO, 2020). A person can contract HIV through unprotected sex, sharing needles with a person who has HIV, or by receiving infected blood products or transplanted organs (National Institutes of Health [NIH], n.d.-a). In the United States, during the early 1980s, HIV primarily affected young, white, middle-class men in urban areas along the East and West Coasts (Moore, 2011; Pellowski et al., 2013). In the United States today, HIV is a disease that affects all ages, genders, races, and income levels, involving multiple transmission risk behaviors (Moore, 2011). In addition, HIV is concentrated in socially AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 11 marginalized and disenfranchised communities, with most HIV infections occurring in sexual minorities and communities of color (Pellowski et al., 2013). HIV disproportionately affects men who have sex with men (MSM) and racial minorities in the United States (Moore, 2011). In 2018, 1.2 million people aged 13 and older had HIV in the United States, including 161,800 (14%) who had not been diagnosed (Centers for Disease Control and Prevention [CDC], 2020e). HIV prevalence is influenced by several social conditions that facilitate HIV transmission, such as poverty, discrimination, and inequality (Moore, 2011). The CDC recommends routine HIV testing for all Americans ages 13 to 64, recommending testing for adults over 64 if they have risk factors for HIV infection (Moore, 2011). Missed Opportunities for HIV Diagnosis in Older Adults Routine HIV testing is a productive and cost-effective method for the early detection of HIV infection (Ford et al., 2015). Regular HIV testing entails testing each patient who consents to be tested for HIV regardless of any reported risk behaviors (Ford et al., 2015). Routine HIV testing can help detect undiagnosed HIV infection among people unlikely to seek an HIV test, including those presumed to have little or no HIV risk (Ford et al., 2015). In 2006, the CDC recommended routine opt-out HIV testing of all adults 65 years and younger seeking healthcare services where HIV prevalence is equal to or greater than 0.1% (Ford et al., 2015). However, there are missed opportunities to diagnose HIV in older adults (Tillman & Mark, 2015). According to Kirk & Goetz (2009), late HIV diagnosis leads to a higher rate of AIDS progression in older adults following HIV diagnosis and treatment than in young adults. In addition, at the time of diagnosis, older adults generally have more-advanced disease progression than their younger counterparts (Kirk & Goetz, 2009). AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 12 Older adults are less likely to get tested for HIV than young adults, so they may not be aware they are infected, and signs of HIV may be mistaken for those caused by aging (National Institute on Aging [NIA], 2017). Older adults are also vulnerable to late or missed diagnosis and poorer treatment outcomes due to the misconception that they are not at risk (Kearney et al., 2010). Older adults believe HIV is mainly a disease associated with young people (Anokye et al., 2019). Although older adults visit their physicians more often, they are less likely to discuss HIV and HIV testing with their physicians (CDC, 2019a). Older adults have similar HIV risk factors to younger adults, including a lack of knowledge about HIV prevention and sexual risk (CDC, 2019a). HIV-related stigma is also a barrier to older adults being tested for HIV. Because of stigma, older adults are reluctant to seek HIV treatment or disclose their HIV status for fear of losing family, friends, or community support (CDC, 2019a). Kirk & Goetz (2009) stated that healthcare providers are less likely to recommend HIV testing to asymptomatic older adults. However, failure to test older adults not showing signs of HIV infection may result in advanced immunodeficiency and early death (Kirk & Goetz, 2009). The societal assumption that older adults do not engage in sexual activity or abuse drugs hinders access to preventative health information and early HIV testing (The Lancet Healthy Longevity, 2022). Aging with HIV A limited amount of research is currently available regarding HIV's impact on aging (The Lancet Healthy Longevity, 2022). However, according to Greene et al. (2015), enhancements in antiretroviral drug regimens have allowed adults diagnosed with HIV to live longer lives. As a result, HIV has become a manageable chronic illness rather than a deadly virus (Greene et al., 2015). As people live longer with HIV, they face multiple challenges and issues, including higher rates of co-morbidities and possible accelerated aging (Womack et al., 2015). Anokye et AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 13 al. (2019) mentioned that approximately 45% of patients diagnosed with HIV in 2014 were adults aged 50 years and above. More recently, in 2018, the CDC indicated that more than half of those who received an HIV diagnosis in the United States were over 50 (NIH, n.d.-b). In 2016, out of 39,782 new cases of HIV, 6812 (17%) were diagnosed among adults aged 50 years or above in the United States (Anokye et al., 2019). Based on the CDC (2019a), in 2017, there were 38,739 new HIV diagnoses in the United States, of which 6,640 were among people aged 50 and older. It has been found that older people with HIV suffer from significant impairments in physical and cognitive function (Montano et al., 2019). According to a report from the Harvard Center for AIDS Research, older people with HIV still face psychological, mental, and comorbid health issues, reducing their quality of life (Montano et al., 2019). Those diagnosed late and starting their antiretroviral later in life tend to have a reduced life expectancy (Baylock & Wortman, 2015). HIV-positive older people are more likely to experience weight loss, exhaustion, slowness, and decreased physical activity levels than their HIV-negative counterparts (Baylock & Wortman, 2015). Brooks et al. (2012) found that median initial CD4 counts, which measure the immune system's strength, were lower in people over 50 than those under 50. Older adults with HIV are more likely to experience geriatric symptoms, including falls, incontinence, functional impairments, cognitive impairments, sensory impairments, and frailty, according to Greene et al. (2015). Additionally, a more significant proportion of older people were diagnosed with AIDS at their diagnosis (Brooks et al., 2012). Consequently, aging with HIV and experiencing geriatric syndromes can be detrimental to the aging process in older adults. According to The Lancet Healthy Longevity (2022), healthcare systems are incapable of meeting the needs of older HIV-positive individuals. An absence of integrated HIV-related AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 14 services and support worsens fragmented care for older people with HIV (The Lancet Healthy Longevity, 2022). HIV in Women Although women are living longer with HIV, their life expectancy is shorter than women who are HIV-negative (Womack et al., 2015). Womack et al. (2015) explored the areas where the primary care of women with HIV typically differs from the direct care of aging women who are HIV-negative. There are several risk factors women who are HIV-positive living in the United States may face. These risk factors include belonging to the Black race, smoking, stress, less education, and illicit drug use (Womack et al., 2015). In addition, contextual and sociocultural factors affect women aging with HIV, creating stigma and discrimination that occurs on multiple levels, affecting work, family, friends, and sexual relationships (Subramaniam et al., 2017). Older women with HIV are rarely addressed regarding HIV prevention and care, and societal biases related to age add to the myriad of issues facing older women and HIV (Durvasula, 2014). Durvasula (2014) argued that older women with HIV fare more poorly and are often accompanied by psychosocial and psychological issues. Due to challenges enhanced by socioeconomic status, stigma, discriminatory health systems, and limited healthcare providers adequately equipped to meet the needs of older women with HIV, older women with HIV tend to face unique barriers to medication adherence (Durvasula, 2014). HIV in African American Women African American women are over-represented and overburdened among women living with HIV in the United States (Kemp et al., 2019, p. 2). Although African American women represent only 13% of the total female population, they account for 61% of HIV diagnoses among women in the United States (Kemp et al., 2019). HIV affects African American women AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 15 with morbidity and mortality rates higher than women of any other race (Subramaniam et al., 2017). Currently, there are few HIV prevention and care interventions tailored for African American women. Bradley et al. (2018) highlighted three essential factors to consider when planning culturally appropriate studies to address HIV-related disparities affecting Black women in the United States. Those three factors include social determinants of HIV risk, determinants of equality of Black women, and perceptions of Black womens sexuality (Bradley et al., 2018). According to Bradley et al. (2018), determinants of equality relate to why Black women in the United States are more likely than White women to become infected with HIV. Racism in healthcare can deter Black women from initiating HIV care or continuing HIV care (Bradley et al., 2018). Existing research suggests difficulties accessing health care or navigating healthcare systems can negatively impact HIV prevention and care outcomes for Black women (Bradley et al., 2018). According to Bradley et al. (2018), the perceptions of Black women's sexuality are the third HIV-related disparity affecting Black women. The perception that Black women are more promiscuous, irresponsible, and reckless than women of other races persists despite research indicating the contrary (Bradley et al., 2018). Awareness of false perceptions sheds light on the historical context and modern-day adverse effects of the sexual exploitation of Black women in the United States (Bradley et al., 2018). Researchers, practitioners, and policymakers likely lack the knowledge to understand how historical representations of Black womens sexuality impact perceptions of HIV risk (Bradley et al., 2018). African American women are disproportionately affected by HIV, so psychological challenges associated with HIV aging, including depression and suicidal thoughts, must be monitored and managed (Subramaniam et al., 2017). Resilience refers to maintaining stable, healthy psychological and physical functioning levels after exposure to a disruptive event, such AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 16 as being diagnosed with HIV and living with HIV (Subramaniam et al., 2017). Several theories are utilized in research to address how African American women experience adversity and oppression while living with HIV. Subramaniam et al. (2017) used the Black feminist theory to highlight African American women overcoming adversity and resisting oppression, emphasizing their voices, wisdom, and resilience. Despite their oppression, low-income African American women with HIV can cope with discrimination (Subramaniam et al., 2017). Supportive social relationships and environments improved outcomes for African American women living with HIV despite racism, prejudice, and discrimination (Subramaniam et al., 2017). Warren-Jeanpiere et al. (2017) also examined the intersection of race, class, gender, age, and HIV-related stigma in African American women living with HIV. As a result of HIV-related stigma, societal ageism, mainstream views of Black female sexuality, and economic security, older African American women with HIV are less likely to seek informal support for managing their HIV compared to those with chronic illnesses other than HIV (Warren-Jeanpiere et al., 2017). Moreover, psychological distress can pose unique challenges to African American women's ability to manage their HIV infection, causing stress, depression, anger, sadness, and other negative emotions (Peltzer et al., 2017). In order to improve the quality of life for African American women with HIV, HIV care and support providers need to understand their daily struggles and how those struggles evolve (Warren-Jeanpiere et al., 2017). For older African American women living with HIV, HIV care and support providers must provide informational and emotional support beyond the typical clinical visit (Warren-Jeanpiere et al., 2017). HIV in Older African American Women HIV is a significant public health concern disproportionately affecting older African American women. Specifically, African American women between the ages of 5064 comprised AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 17 approximately 40% of the newly diagnosed cases in 2010 (Smith & Larson, 2015). In 2018, 56,607 African American women between the ages of 50-64 were living with a diagnosed HIV infection compared to 20,164 Hispanic/Latino women and 17,328 White women between 50-64 living with a diagnosed HIV infection in 2018 (CDC, 2020c). For older African American women, the nature and intensity of HIV-related stigma may be more significant due to social inequities based on gender, race, and age (Sangaramoorthy et al., 2017). For example, Sangaramoorthy et al. (2017) argued that HIV-related stigma could present challenges for older African American women with HIV due to the loss of support, comorbidities, and ageism. Furthermore, it is suggested that gender and racial disparities are a reality for older African American women with HIV at every step of the HIV care continuum (Sangaramoorthy et al., 2017). Older African American women face multiple co-occurring social and psychological vulnerabilities that reduce their ability to be engaged in the HIV care continuum (Sangaramoorthy et al., 2017). For example, African American women, including older African American women, in comparison to other racial groups, are more likely to experience poverty, violence, gender discrimination, and racial discrimination and live in disorganized neighborhoods (Amutah-Onukagaha et al., 2018). Generally, older African Americans tend to mistrust the healthcare system, which increases their risk of developing complications that result in decreased quality of life (Amutah-Onukagaha et al., 2018). HIV in the Southern United States The South or Southern United States is known for its distinctive culture and conservative views. The Southern United States is also renowned for its involvement in slavery and the Civil Rights Movement. The Southern United States has historically and currently been affected by structural and systemic racism. Systemic and structural racism encompasses racism deeply AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 18 ingrained in laws, policies, practices, and beliefs, leading to widespread unfairness and oppression (Braveman et al., 2022). Several critical social, structural, and policy factors contribute to poorer health and HIV status among Southerners (Adimora et al., 2014). Many African Americans with HIV in the South are affected by social and structural health determinants rooted in oppression, poverty, racism, and unequal opportunities for education and employment, contributing to HIV disparities (Sutton et al., 2017). Those living in the Southern United States, where poverty is highest and median household income is lowest, are least likely to have health insurance (Adimora et al., 2014). Patients with health insurance have better health outcomes, including sustained viral suppression, shorter hospital stays, and lower mortality (Furl et al., 2018). As a result, a disproportionate number of people in the Southern United States are affected by HIV, with 51% of the 37,967 HIV diagnoses occurring in the South in 2018 (CDC, 2020d). Although 38% of the United States population lives in the South, eight of the ten states with the highest rates of new HIV diagnoses are in the South (CDC, 2019b). African Americans are disproportionately affected by HIV, accounting for 53% of new HIV diagnoses in the region in 2017 (CDC, 2019b). More specifically, in 2011, the HIV diagnosis rate among African Americans in selected southern states (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas) was 73.7 per 100,000, compared with 24.8 per 100,000 among Hispanics/Latinos, and 8.8 per 100,000 among Whites (Sutton et al., 2017). HIV Treatment Adherence and Social Connectedness Optimal outcomes for HIV-positive individuals are achieved through a continuum of care that includes HIV testing, diagnosis, linkage to care, treatment, and adherence to antiretroviral therapy (Yehia et al., 2015). Older African Americans with HIV can live healthier, longer lives AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 19 by participating in the HIV care continuum; however, they are less likely to do so than other older populations (Sangaramoorthy et al., 2019). Compared with other women with HIV, African American women with HIV have higher morbidity and mortality rates because they are less likely to receive antiretroviral therapy, begin treatment later, and stop treatment early (Kemp et al., 2019). Adherence to antiretroviral treatment is essential to preventing HIV replication, AIDS progression, and HIV-related complications (Lee et al., 2017). Having an undetectable viral load is the best thing people with HIV can do to stay healthy (CDC, 2022). Several factors can hinder African Americans engagement and retention in HIV treatment, including race, gender, sexuality, drug use, and incarceration (Sangaramoorthy et al., 2019). Sangaramoorthy et al. (2019) discussed several other barriers to African Americans engagement and retention in care, including multiple morbidities, inability to pay co-payments, inadequate insurance coverage, being too busy, working inflexibly, accessing transportation, or not receiving personalized attention. A person with HIV/AIDS faces many challenges regarding self-management (Warren-Jeanpiere et al., 2014). For African American women who developed HIV at a younger age and are currently dealing with multiple comorbid conditions, getting and staying involved in care might be more challenging (Warren-Jeanpiere et al., 2014). Even though older African Americans are at a higher risk of HIV infection and are underrepresented in HIV treatment and care processes, no literature reviews have examined the factors that may prevent them from receiving HIV care and treatment (Sangaramoorthy et al., 2019). In addition to HIV treatment, according to Dale & Safren (2018a), social support is a crucial resilience tool that enables women to persevere and recover from setbacks such as trauma and HIV stigma. Apart from their family and partners, women also found that support groups with HIV-positive peers helped them to develop resilience (Dale & Safren, 2018a). Furthermore, HIV-positive peers were AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 20 viewed as essential in helping women buffer HIV-related discrimination and stigma, heal from trauma, and develop strategies to cope with stress (Dale & Safren, 2018a). According to Sangaramoorthy et al. (2019), culturally appropriate policies and interventions are needed to enhance the effectiveness of treatment and adherence among older African Americans, with further research focused on managing HIV and commonly associated aging conditions to address older African Americans' health and psychosocial concerns effectively. Resilience, Social Support, and Religion HIV-related stigma adversely affects the health and well-being of people with HIV/AIDS, including their mental, physical, and social well-being (Travaglini et al., 2018). HIV stigma discriminates against people with HIV through prejudice, discounting, and discrediting (Lipira et al., 2019a). Internalized stigma occurs when a person with HIV experiences negative thoughts or feelings about their HIV status (Lipira et al., 2019a). HIV-related stigma hinders the effective treatment and positive health outcomes for people with HIV (Sangaramoorthy et al., 2017). For women, racial and ethnic minorities, and older adults, the nature and intensity of HIV-related stigma may be more severe due to pre-existing social inequities based on gender, race, and age (Sangaramoorthy et al., 2017). According to Sangaramoorthy et al. (2017), HIV prevalence is extremely high among Black adults older than 40. The stigma associated with HIV can be particularly challenging for older and midlife people because of issues related to loss of social support, management of comorbidities, and ageism (Emlet, 2006, as cited in Sangaramoorthy et al., 2017). Many African American women with HIV experience adverse health outcomes and high mortality rates due to inadequate antiretroviral medications (Lipira et al., 2019a). Moreover, African American women with HIV experience significant stigma and depression due to their AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 21 HIV status (Lipira et al., 2019b). Negative experiences of HIV-related stigma among African American women living with HIV have been associated with depression, decreased psychological functioning, and other symptoms (Lipira et al., 2019a). The impact of existing inequalities can be mitigated by addressing HIV-related stigma among African American women living with HIV (Lipira et al., 2019b). HIV-related stigma can be addressed in intersectionality by promoting resilience, described as identifying and using resources and protective factors to help cope with adversity (Lipira et al., 2019b). For African American women with HIV, religion, social support, and ethnic identity may mitigate adverse psychosocial outcomes such as depression (Lipira et al., 2019b). African American women have traditionally relied on religion to support positive actions and outcomes (Lipira et al., 2019b). Research has shown that religious belief contributes to the psychological well-being of African American women living with HIV (Lipira et al., 2019b). Among African American women living with HIV, Lipira et al. (2019b) found that prayers are extremely common, with most women praying more than once daily. African American women with HIV can benefit from social support (Lipira et al., 2019a). Furthermore, social support reduces loneliness, stress, and depression among HIV-positive women enabling them to resist the adverse effects of the stigma associated with HIV (Lipira et al., 2019b). There is also a positive association between a greater sense of ethnic identity and lower anxiety, depression, and psychological stress among African Americans (Lipira et al., 2019b). Optimal Aging Optimal aging is something many people would like to experience as they grow older, especially while living with an illness. Optimal aging is a broader concept focused on a fuller picture of wellness, including the capacity to function across many domains-physical, functional, AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 22 cognitive, emotional, social, and spiritual to ones satisfaction and despite ones medical condition (Bowling Green State University, n.d.). Aldwin et al. (2018) suggest that models of optimal aging are multifaceted and indicative of an ultimate goal. According to Aldwin et al. (2018), many studies predicted health in late life using unidimensional outcomes such as longevity, avoidance of disease, and self-reported health. Historically, much of the research on aging with HIV has been related to successful aging, distinguished from optimal aging. Successful aging encompasses three elements: avoiding disease and disability, maintaining high physical and cognitive function, and sustaining engagement in social and productive activities (Guccione, 2012). While successful aging is often used to describe one way to age well, optimal aging recognizes that the aging process can be influenced in many ways. (Aldwin et al., 2018). Aldwin & Igarashi (2015) argued that the term successful aging has implications of competition and could be interpreted as there is only one way to age successfully. Identifying how older adults cope with age-related changes and respond to challenges in late life is critical to understanding optimal aging (Aldwin & Igarashi, 2015). In Aldwin et al. (2018), optimal aging is recognizing and using personal, social, and cultural resources to maintain optimal functioning and find meaning. Fawcett & Foust (2017) contend that stressors within individuals, families, or communities impact optimal aging. By categorizing subgroups of aging adults, different experiences, needs, and resources as an individual ages were identified to learn what contributes to optimal aging from the perspective of varying age groups (Fawcett & Foust, 2017). AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 23 Prior Research on Aging and HIV Current literature on aging and HIV is emerging. The impact of HIV on aging is not entirely clear, as most persons with HIV can live healthy and long lives. In contrast, others struggle with multiple comorbidities that negatively impact their quality of life (Budak, 2020). Understanding age-related contextual sociocultural, psychosocial, and personal factors related to older adults with HIV is crucial to reducing psychological burdens and maintaining their health (Sankar et al., 2011). According to Ford et al. (2015), routine HIV testing recommendations are only partially implemented among older adults. Identifying and resolving implementation barriers to HIV testing among older adults is vital to addressing late HIV diagnosis. The challenge of HIV infection for older African Americans remains substantial, despite advances in clinical and treatment practices (Sangaramoorthy et al., 2019). While most research on HIV selfmanagement in women focuses on young women, age becomes vital in understanding how women with HIV manage their infection (Warren-Jeanpiere et al., 2017). Even though African American women experience significant health and social disparities, few studies have examined factors contributing to their resilience during aging with HIV (Warren-Jeanpiere et al., 2017). Furthermore, there is limited research, if any, related to older African American women with HIV and how they experience or perceive optimal aging. Method Study Design In this study, a phenomenological methodology was used. Phenomenology describes a phenomenon from the perspective of those who have experienced it (Neubauer et al., 2019), while transcendental phenomenology focuses on the meanings of the individual experience (Phillios-Pula et al., 2011). Using this approach, the researcher explored perspectives of optimal AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 24 aging across the physical, functional, cognitive, emotional, social, and spiritual domains among African American women with HIV 50 and older. Before recruiting participants, the University of Indianapolis Institutional Review Board (IRB) approved the study with an exempt level of review status (Appendix A). Participants To be eligible for this study, participants had to be African American women; aged 50 or older; have at least one year of residence in the Southern United States; have a self-reported HIV diagnosis; and have a history of being treated with antiretrovirals for at least 12 months. Participants were excluded if they could not read or speak the English language (needed for the interview) or if there was a deficit in comprehension that prevented them from giving consent. The teach-to-goal method assessed comprehension deficits (Ahalt et al., 2017). Using the teachto-goal method, the researcher read the study information sheet with participants, asked them questions, and corrected misinterpretations. All participants stated they understood the content of the study information sheet. Participants in the study were members of a women's HIV peer support group. Using a method referred to as snowball sampling, participants identified potential participants within their peer support group who met the inclusion criteria. Ten participants were interviewed. The sample size was determined based on information power. The more pertinent information a sample possesses, the smaller the required sample size (Malterud et al., 2016). Further, information power was used to assess whether qualitative findings were adequate based on the study's objectives, the sample's specificity, the analysis strategy, and the quality of interviews (LaDonna et al., 2021, p. 208). Recruitment ended once information power had been determined. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 25 Procedures Sampling and Recruitment Participants were recruited using snowball sampling. Snowball sampling is helpful in hard-to-reach populations (e.g., HIV patients) where a network of qualified study subjects is assumed to exist, and the researcher is hoping to be linked into this network through social interaction with the initial subject in the network (Dusek et al., 2015, p. 281). To initiate recruitment, the researcher called the director of a community-based organization that provides housing, healthcare services, and support groups for HIV-positive individuals to request assistance in recruiting participants. Following confirmation to assist with recruiting, the director was sent an email using the content in the UIndy IRB-approved message for social media form (Appendix B). The email also included an UIndy IRB-approved study information sheet (Appendix C) and a recruitment flyer (Appendix D) for electronic dissemination. The study information sheet included a summary of the study, information regarding the length and location of the research interviews, eligibility criteria, methods to protect the confidentiality of participants, incentive information, and the researcher's contact information. It was considered whether sending recruitment flyers and study information sheets by mail or e-mail could inadvertently reveal participants HIV status. In addition, it was considered that most participants might not have e-mail or social media accounts. On both concerns, the researcher sought the advice of the director. The director advised that even if participants had email accounts, information on the study information sheet and recruitment flyer could reveal participants' HIV status. Likewise, the researcher was advised that traditional mail carried the same risks. The researcher was also informed that using social media for recruitment would not be effective. The decision was made to share the study information sheet and recruitment flyer AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 26 via screen sharing during a Zoom peer support group meeting to facilitate recruitment. Interested individuals contacted the researcher via telephone and expressed their interest in participating. A few participants told the researcher that they had encouraged others in their peer support group to contact the researcher about participating in the study, a strategy referred to as snowball sampling. Participants began calling the researcher shortly after their Zoom peer support group meeting to enroll in the study. As a result, it was possible that some individuals calling to express interest in the study had not attended the peer support group meeting via Zoom when the study information sheet and recruitment flyer were shared. As such, during the screening call, if an individual had not attended the support group and seen the study information sheet, they were asked if they would like to view a study information sheet before being screened. All participants gave verbal consent to proceed with the screening questions. The researcher used the demographic and background information sheet (Appendix E) to screen participants when they called to express interest in the study. The researcher introduced herself to each participant over the telephone during the screening process. Participants were informed that the researcher was not affiliated with UAB. The study information sheet was not emailed to participants; none had active email accounts. After participants provided verbal consent to be screened, the researcher discussed the study in detail by reading the information on the study information sheet. The researcher then asked participants if they had any questions or concerns regarding the study information verbally discussed. Using the teach-to-goal method, all participants fully understood the researchers verbal reading of the study information sheet. Most women lived within the same apartment complex designated for HIV-positive individuals. Only two of the participants lived outside the apartment complex. Following AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 27 COVID-19 safety measures, the researcher hand-delivered the study information sheets to participants, encouraged them to read through the entire sheet, and asked them to call the researcher if they did not understand any of the information provided. The researcher informed participants that they would be given one week to decide to participate in the study. After one week, participants were contacted to confirm they had read the study information sheet and were interviewed. Informed Consent To avoid collecting identifiable information, the researcher requested a waiver of signed consent from the UIndy IRB, which was approved. Verbal consent was obtained from each participant via telephone at the start of each interview. Before each interview, the researcher and the participant reviewed the study information sheet together. The researcher highlighted the purpose of the study, explained what the participant was being asked to do, and confidentiality of the patients identity and interview information. Participants were allowed time to ask questions before the start of each interview. Data Collection Process This studys primary data collection was a semi-structured interview with each participant, directed by an interview guide (Appendix F). The interview guide was comprised of open-ended questions designed to allow participants to provide detailed information about their experiences related to optimal aging with HIV as an older African American woman living in the Southern United States. A semi-structured interview allowed the researcher to collect openended data to explore participants' thoughts, feelings, and beliefs and allowed the researcher to delve deeply into personal and sensitive issues (DeJonckheere & Vaughn, 2019, p. 1). Since safety protocols for the COVID-19 pandemic were still in place and participants were AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 28 immunocompromised, the researcher conducted all ten interviews by telephone. Each interview was conducted in a closed office to ensure the privacy and confidentiality of each participant. The researcher used two digital audio recorders to record each interview to guard against device malfunction. The interview lengths varied, with the shortest being 25 minutes and the longest being 70 minutes. Before each interview, the researcher discussed the aim of the study and provided participants with time to answer any questions. Informed consent was also re-established verbally. Participants were reminded of their right not to answer any questions they wished not to answer. They were also informed that they could withdraw their participation at any time during the interview. The researcher also stressed that protecting their confidentiality and interview information was the researchers top priority. The researcher informed participants that they did not need to provide their names and that each participant would be issued participant identification numbers. Participants were also reminded that the researcher was not affiliated with UAB 1917 or UAB Family Clinic in any capacity. Participants were reminded that the researcher was conducting research as part of completing their doctoral studies at the University of Indianapolis. Additionally, permission to audio record the interviews was verbally obtained from each participant. At the beginning of each interview, the researcher re-introduced herself and provided a brief background to establish rapport and build trust with participants to feel comfortable sharing their experiences. The researcher followed the questions in the interview guide but also asked follow-up and probing questions when clarification or additional information was needed from participants. The researcher took handwritten notes to document needed and beneficial contextual information (e.g., participant facial expressions and body language). Throughout the AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 29 data collection process, the researcher engaged in reflexivity by writing down any biases, thoughts, feelings, beliefs, and assumptions that surfaced during and after each interview. Reflexivity was a crucial component in removing researcher bias since the researcher worked in the field of HIV/STDs. Each interview ended with the researcher thanking the participants for their time once all questions were answered and follow-up questions were not required. Participants were once again assured that their confidentiality would be maintained and that their contact information would be stored in a password-protected cloud storage system, with their contact numbers separated from their identifying information. Instead, all contact numbers were labeled with the assigned participant identification numbers. As mentioned, eight participants lived in the same apartment complex, while the remaining two lived nearby. According to the participants, they wished to refrain from receiving correspondence by mail. Therefore, the researcher informed participants that they would be contacted by telephone to schedule a time for member checking. It was explained to participants that member checking entailed reviewing the transcript of their audio-recorded interview (written or typed responses) to confirm the accuracy of narratives shared during the interviews, correcting them where necessary. After each telephone interview, each participant received a $30 incentive, eight participants requested cash, and two requested their incentive via Cash App. Following COVID-19 safety measures, the researcher handdelivered the cash incentives to each participant. The researcher logged each incentive payment on a participant receipt incentive form using participant identification numbers, dates, and payment type. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 30 Data Management and Analysis Audio recordings of each interview were removed from the digital audio recorder, uploaded to a computer, and backed up in password-protected cloud storage. The uploaded data was transcribed using Temi, an audio-to-text service. The researcher confirmed the accuracy of each transcript by listening to the audio recordings of each interview several times while reading the transcribed data. Once the accuracy of each transcript was confirmed, the researcher removed all identifying information. Each participant was assigned a participant identification number to maintain confidentiality. The researcher exported the data from Temi to password-protected cloud storage and the qualitative data analysis software Dedoose (version 8.3.35). Transcripts were printed to prevent the loss of collected data. Hard copies of any printed material and research notes were locked in a file cabinet only available to the researcher. The researcher engaged in a phenomenological approach to data analysis. Specifically, phenomenologist Paul Colaizzis approach was used to accurately describe the phenomenon through the eyes of the study participants (Phillips-Pula et al., 2011, p. 68). Colaizzi's seven-step process involves the researcher (1) becoming familiar with the data by reading through participant's responses multiple times; (2) returning to original transcripts to identify significant statements relevant to the phenomenon being studied; (3) formulating meanings relevant to the statements provided by participants; (4) creating themes based on the formulated meanings (5) developing an exhaustive description of the phenomenon to incorporate themes; (6) identifying fundamental structure; and (7) validating the identified fundamental structure with each participant (Morrow et al., 2015; Phillips-Pula et al., 2011; Suryani et al., 2016). The first step of Colaizzis method suggests that the researcher read each participants transcription several times (Suryani et al., 2016). The researcher read each participants AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 31 transcript several times while playing back each interview recording to become familiar with the data and to gain an overall feeling of the experiences described by the participants. While reading each transcript several times, the researcher engaged in memoing by writing short phrases, key concepts, or ideas. Memos are the storehouse of ideas generated and documented through interacting with data, prompting researchers to analyze, code data, and develop codes into categories early in the coding process (Chun Tie et al., 2019). The second step of Colaizzis method suggests the researcher return to the original transcripts to identify significant statements relevant to the phenomenon being studied (PhillipsPula et al., 2011). The researcher carefully read through each original transcript and identified significant statements relevant to optimal aging experiences with HIV in African American women 50 and older living in the Southern United States. The researcher looked for patterns, words, and phrases that were consistent or repetitive, which resulted in comprehensive themes or meanings. The researcher then pulled out all significant statements and coded each statement using Microsoft Excel to create a codebook. Codes were labeled with the name of the code, its definition, and the quotes associated with that code. The transcript page and line number were used to identify each quote corresponding to the code. Once there was an established foundation for coding the data, the researcher coded segments according to the phenomenon being studied and created a complete description of the data (Phillips-Pula et al., 2011). The researcher entered the codebook into Dedoose to apply the codebook to the remainder of the transcripts. The researcher used the codebook as a qualitative tool to reference identified codes. To reach a consensus on a codebook, the researcher and the analysis expert met via Zoom and discussed the designated portions of the transcript line-by-line. After discussing the codes with the analysis expert, the researcher refined the codebook. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 32 The third step of Colaizzis method suggests that the researcher formulate meanings relevant to the statements provided by participants (Suryani et al., 2016). Accordingly, the researcher analyzed each significant statement for explicit and implicit meanings relevant to the studied phenomenon. The researcher then categorized each significant statement according to its meaning. Throughout the process, the researcher engaged in reflexivity by recording her thoughts, feelings, uncertainties, values, beliefs, and assumptions that surfaced in a research journal (Carlson, 2010). Reflexivity refers to the researchers attempts to adopt a blank slate, a perspective of objective distance from which to study a phenomenon afresh (Olmos-Vega et al., 2023, p. 242). Reflexivity allowed the researcher to ensure that the formulated meanings were a true and accurate representation of the participants responses. The fourth step of Colaizzis method suggests that the researcher create themes based on the formulated meanings (Phillips-Pula et al., 2011). The researcher created themes based on the formulated meanings from the significant statements. The formulated meanings were then organized into clusters of themes, and each cluster of themes was compressed into an emergent theme. The researcher created a theme table using direct participant quotes from the codebook highlighting common experiences or information related to the research question. Additionally, the researcher kept careful documentation of all study components and activities throughout the study to maintain credibility using Dedoose. The researcher used Dedoose to capture emerging ideas as the data was collected and analyzed and to record thoughts and feelings that may have played a part in her decision-making process. Memoing in Dedoose also provided documentation to justify why and how decisions and connections were made related to developing codes and themes (Chun Tie et al., 2019). AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 33 The fifth step of Colaizzis method suggests that the researcher develop an exhaustive description of the phenomenon to incorporate themes (Phillips-Pula et al., 2011). The researcher developed an exhaustive description of the phenomenon to incorporate themes (Phillips-Pula et al., 2011). The researcher integrated all the resulting ideas into a comprehensive description of the lived experiences of African American women 50 and older with HIV in the Southern United States by combining all the theme clusters, emergent ideas, and formulated meanings. The sixth step of Colaizzis method suggests that the researcher identify the phenomenon's fundamental structure or key elements (Suryani et al., 2016). The researcher condensed the findings by identifying misused, unnecessary, or misinterpreted descriptions. As a result, the researcher avoided repetitions and provided a clear and concise description of the phenomenon. The seventh step of Colaizzis method, in which the researcher validates the identified fundamental structure with each participant (Morrow & King, 2015), was carried out via member checking. To protect participant privacy and confidentiality, the researcher delivered a copy of the researcher's interpretations of initial themes in person, following COVID-19 safety guidelines. Participants were instructed to carefully read the findings and make corrections if the researcher's interpretation was incorrect. The researcher informed participants that they would be provided one week to review the findings. A week later, the researcher called each participant to discuss possible changes. Two participants could not be reached by telephone by the researcher. Three participants declined to review the researcher's interpretation. Four participants reviewed the researcher's interpretations, but no corrections were made. One participant did not offer corrections but expressed appreciation for the researcher not capturing her name when she accidentally mentioned it. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 34 Rigor and Trustworthiness Trustworthiness or rigor of a study refers to how much the findings from a study can be trusted (Korstjens & Moser, 2018). The researcher used Guba and Lincolns evaluative criteria to establish trustworthiness: credibility, dependability, confirmability, and transferability (Forero et al., 2018). A qualitative study is credible when the results are a true reflection of the lived experiences of the participants (Maher et al., 2018). To ensure that the studys findings were true and accurate, the researcher utilized member checking to validate results by seeking input from participants to judge the accuracy of the researchers interpretations (Creswell & Poth, 2018). Participants were given a copy of the researcher's interpretations of their interviews to review and inform the researcher if any corrections were needed. The researcher wanted to ensure the study could be repeated by someone outside the study and possibly yield similar results, which is dependability (Maher et al., 2018). The researcher ensured dependability by describing the research process in detail and step-by-step via a thorough and complete audit trail. Dependability was also carried out by the researcher taking careful steps to not make mistakes in collecting data, interpreting the findings, and reporting the results. A codebook was revised and updated from input provided by the researchers analysis chair. In addition to ensuring that other researchers could replicate the study outside of the current study, the researcher also wanted the findings to be transferable to different situations or settings, referred to as transferability (Maher et al., 2018). The researcher ensured transferability by describing participants' behaviors, experiences, and context in detail so the reader could determine whether the research context applied to their situation (Maher et al., 2018). Using information power, the researcher also assessed whether qualitative findings were adequate to AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 35 the study's objectives, the sample's specificity, the analysis strategy, and the quality of the interviews (LaDonna et al., 2021, p. 208). To ensure confirmability, the researcher engaged in reflexivity and memoing. The researcher engaged in reflexivity throughout the analysis process by recording any thoughts, feelings, uncertainties, values, beliefs, and assumptions that surfaced throughout the research process (Carlson, 2010). The researcher also utilized memoing to ensure confirmability by writing reflective notes about why and how connections were made from analyzing the data. Reflexivity is another validity tool for researchers to self-disclose their assumptions, beliefs, and biases that may shape their inquiry (Creswell & Miller, 2000). Memoing and reflexivity proved very important since the researcher works with HIV-positive individuals. Both reflexivity and memoing helped the researcher prevent biases or misconceptions about the findings. Results This study included 10 participants. All participants met the inclusion criteria of being an African American female 50 and older, residing in the Southern United States, and engaged in active treatment for their HIV diagnosis for at least 12 months with an HIV care provider at the time of the interview. Each participant was assigned a participant identification number to protect their identity and to ensure confidentiality. Table 1 displays the complete sociodemographic sample characteristics of each participant. Seven themes emerged on the perceptions and lived experiences of optimal aging among African American women aged 50 and over with HIV in the Southern United States: (1) staying healthy with HIV-taking responsibility for your health, (2) feeling and looking younger than your actual age, (3) being in your right mind," (4) social connectedness and support, (5) keeping yourself up, (6) being AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 36 "kept" by God, and (7) adjusting to your new normal. Subthemes were also identified and are described within the themes below. Table 2 presents the listed themes in narrative detail. Theme 1: Staying Healthy With HIV-Taking Responsibility for Your Health Staying healthy with HIV emerged as an overarching theme among participants. This theme included obtaining and maintaining an undetectable viral load, adhering to HIV treatment regimens, and having autonomy in healthcare decisions. There was a strong consensus among participants that obtaining and maintaining an undetectable viral load, adhering to HIV treatment regimens, and feeling empowered to make decisions about their health were all essential factors to experiencing optimal aging with HIV. Undetectable Viral Load All 10 participants viewed an undetectable viral load as the best thing a person with HIV could have to stay healthy and experience optimal aging. Participants felt proud and accomplished about having an undetectable viral load, as it reduces the chances of HIV attacking the immune system. As a result of having an undetectable viral load, some participants expressed that life was easier than expected after being diagnosed with HIV. Upon being asked what optimal aging is and what it means to be happy, participant 007 (age 63) insinuated that being undetectable makes aging with HIV easy. She stated: I feel like aging with this HIV, and I am undetectable, and you know, its easy, to me, its easy. Cause you have had it so long; it is just like any other disease. That is all it is. You just have to take care of yourself. Similarly, participant 002 (age 61) discussed the importance of an undetectable viral load by stating, "That is the only way to keep your immune system. See, you got to keep it and keep up on your numbers and stuff. The maintenance of a low or undetectable viral load can decrease AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 37 the chances of HIV progressing to AIDS, as well as decrease susceptibility to other serious diseases. To assess her health status when discussing aging and HIV, participant 006 (age 64) mentioned that having an undetectable viral load was her benchmark. She stated, Well, like my doctor told me, I have it, but it is very slim. My, my, how they say it? My T-cells, whatever they say. I do not have a whole lot of HIV in my body. I am undetectable. Participant 010 (age 69) mentioned getting in the habit of attending scheduled appointments to maintain viral load numbers. As for lifestyle changes to promote optimal aging, participant 010 said, "It is mostly keeping appointments with your doctor. You have to stay on top of your numbers, your viral loads." Adhering to HIV Treatment Regimens In terms of optimal aging, all participants reported adhering to their HIV treatment regimens, whether taking medications as prescribed, attending appointments, or maintaining their health. Based on their shared perceptions and experiences, participants indicated they understood the negative consequences of failing to comply with treatment regimens and missing doctors appointments. Among most participants, adhering to HIV treatment regimens was the initial response when asked for the meaning of optimal aging with HIV. One participant expressed that taking prescribed medications and following doctors instructions allowed individuals infected with HIV to live and age similarly to those not infected with HIV. Participant 006 (age 64) stated, But then if you take your medicine every day, there is nothing wrong with you. I mean, if you take your medicine and do what the doctor tells you to do, you can live just like everyone else. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 38 Participant 007 (age 63) provided a similar answer when asked about optimal aging. She stated: The first thing I say is, take your medicine. That is the first thing I say. And just live like regular folks. Just live. That is the way I look at things. I am a regular person, and I am just living, you know. Another participant discussed keeping medical appointments and addressing co-morbidities to ensure optimal aging. Participant 004 (age 61) stated: Make sure I go do my testing that I have every six months. I make sure all my medical health problems are good. That is my main thing, make sure that I am in good health first and that there is nothing else going on inside my body. Lastly, participants shared their views on HIV treatment adherence and its importance in staying healthy and aging optimally with HIV. Participant 002 (age 61) said, So, you just got to do like the doctors tell you. And you got to take your medicine. You do not take the medicine; you end up down, and your immune system go be low. Autonomy in Healthcare Decisions Participants reported autonomy in healthcare as a vital component of staying healthy with HIV and experiencing optimal aging. Most participants said autonomy in healthcare made them feel optimistic about their quality of life. Participants shared experiences of adverse side effects from certain medications, along with feeling empowered to have the ability to express their health concerns openly with their HIV care provider. Participant 010 (age 69) stated, Medications may affect them [other older women diagnosed with HIV] in the same way, so they can tell you, you know, this medicine worked for me. Um, so ask your doctor. Can you try AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 39 that one? Frustrated with the efficacy of the prescribed medication and not having an opportunity to discuss wanting to stop the medicine, participant 004 (age 61) stated: But it does not bother me anymore after I had just stopped taking the medicine they were giving me. It helped some, but it did not help a lot. And I said I might as well just gone stop taking it, so I stopped taking the medicine. And suddenly, I do not even feel the pain in my side. Participant 002 (age 61) shared her frustration over not knowing if her HIV medicine further damaged her kidneys. She was aware that HIV damages the kidneys but was not confident in the HIV medication she was prescribed. Due to her uncertainty, she did not feel comfortable addressing her concerns with her healthcare provider. She shared: Because I was sick of saying I do not know what was going on with me. But I was dealing with HIV. I was taking my medicine every day at 8:30. I've been doing dialysis, you know. When you are dealing with HIV, it got something to do with your kidney too. So, on the flip side of that, one of the medications I was taking, I believe, caused me to have kidney failure. But it could have been something else. I just can't put it out there like that. Theme 2: Feeling and Looking Younger than Your Actual Age From the statements made by participants during their interviews, this theme was divided into two categories to support participants' responses. The two categories were self-perception and functional ability. For this research study, self-perception was defined as a person's attitudes and views regarding their physical appearance and feelings toward aging. Participants voiced feeling and looking younger than their age when asked to describe optimal aging. Participants AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 40 considered themselves optimally aging if they appeared to be aging well (not looking old) and had no significant physical limitations. Self-Perception Throughout this study, participants proudly voiced that they did not look, sound, or feel their age. Many participants referred to "black don't crack," a saying within the Black community where someone ages gracefully by looking significantly younger than their actual age. Many participants took pride in the fact that they physically appeared to be 50 or 40 years old to themselves and others. However, they were 60 years of age or older. Participant 005 shared, People really do not think I am 67. As participant 006 (age 64) described optimal aging, she stated, "Not looking old, old, and taking care, keeping yourself fit and up to date. When speaking of the attributes of appearing younger than ones actual age, participants happily embraced their perceptions of not looking old in connection with optimal aging. Participant 008 (age 62) stated, I keep getting told, people keep telling me, you still look like a little girl, so I like to go home in New Jersey, and they say you have not aged." Participant 009 stated, "Uh, like I say, you know, I am 68, but a lot of them say you do not look it. You look like you are 50 or in your 40s. Some even say the 30s. From participants' responses, self-perception also included participants' attitudes and views on how they perceived themselves. Participants were asked to share their feelings on optimal aging for someone who is HIV positive versus for someone who is HIV negative. Most participants expressed that they did not see any difference between them experiencing optimal aging with HIV compared to their HIV-negative friends. Participants mentioned that many of their family and friends are HIV-negative but live with other ailments such as diabetes, heart disease, and arthritis. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 41 Participant 010 (age 69) explained that although she has HIV, she has friends with other ailments who, from her perspective, are not aging optimally by stating: HIV is just; it is just a virus that, you know, um, we have, that I have. I know I have friends that have shingles, and they most likely, they deal with things that could affect, you know, the aging, um, in a way that is not optimal, more so than myself. Participant 003 (age 69) claimed it is also about having a positive perspective on aging by stating, Well, it is a good thing. I guess how you look at it. Some people say it is a bad thing because some people have more problems with aging than others. You know, it is because of how your body takes it. Further discussion with participants on feeling and looking younger than their actual age led to the emergence of the category of functional ability. Functional Ability Functional ability was the second category from the theme of feeling and looking younger than your actual age. Some participants expressed that their limited functional ability negatively affected their daily lives. In contrast, others expressed that their limited functional ability positively impacted their everyday lives, allowing them to carry out the tasks needed to remain independent. Functional ability was considered to be an indicator of optimal aging and good physical health by all participants. When asked to share her feelings about optimal aging, participant 006 (age 64) stated: I am on oxygen. I am like a prisoner in my own house. I can't; I cannot move as fast as I used to move around when I am on this oxygen. And that bothers me. If I have to be somewhere, I got to take my oxygen. It is hard for me to bend down, and it is hard for me to tie my shoe. It is hard for me to do a lot of things. I take my time. I cannot move as fast as I used to. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 42 When asked about challenges to experiencing optimal aging living with HIV, participant 007 (age 63) shared her feelings about being unable to perform daily activities. She stated: But they gonna send somebody to help me, but then I might sweep this room. And I will sit down. I sweep that room. And I will sit down. You know, I do not like that. I just do not like that. Not being able to walk and do things for myself. That is the way I am. In contrast, some participants shared their thoughts on functional ability related to optimal aging by sharing how being independent and mobile influences positive feelings. Participant 010 (age 69) stated, I do not need assistance. Um, for the most part, I am very healthy. Also, when discussing mobility and independence, a 62-year-old participant (008) said, Because, like, there is nothing, there is nothing that gets in my way of doing what I need to do for myself. Likewise, participant 002 (age 61) shared: Because I am walking, I am talking. I got my own mind. I cook for myself. I put my own clothes on. Some things I need help with, like mopping the floor or something. But if I get the right type of tool, I can do it myself. Despite being HIV positive, having co-morbid diseases, and with limited functional abilities, participant 004 (age 61) said, "I could be bedridden, but I am not." She further elaborated on the positive aspect of not being bedridden by continuing to make the most of the functional abilities she does have by sharing: Some people get very depressed because they do not know which way to go or what to do. And their minds were set on things when they were young instead of just moving on with their life because we all have something to do as we go on the journey. We just have to find the purpose of what it is to do. So, I always find myself doing something if it is AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 43 not nothing but cleaning up or going to visit somebody, getting into a program, or finding a study to get in. Participant 004 believed optimal aging with HIV embodied her being blessed to be alive. She said, "So, I just feel like it is a blessing to not be among the dead and just live my life as the days go by and make life better." Theme 3: Being in Your Right Mind The phrase being in your right mind" is used as participants expressed it. In order to capture participants' perspectives, being in your right mind" was defined as having a positive attitude, not being diagnosed with a mental illness, and being aware of your surroundings. This theme was divided into three categories. The three categories were self-acceptance, optimistic attitude, and mental strength. Participants described how these characteristics allowed them to experience optimal aging despite being HIV positive. Self-Acceptance Participants conveyed the importance of self-acceptance and its positive impact on optimal aging. They discussed how accepting their HIV diagnosis laid the foundation for them to be in their right mind. Participants perceived self-acceptance as the catalyst for experiencing mental peace and stopping self-blame. Participant 005 (age 67) reported, I think I have gotten wiser with it because when I first found out about it, I was like, oh no, I knew better, but I have gotten more understanding about everything. Participants responses suggested that self-acceptance helped them effectively cope with denial, anger, sadness, and depression. Participant 003 (age 69) stated, Being comfortable with what I am and how I got it. Despite accepting her positive status, she still experienced negative thoughts. However, she could redirect them by accepting the realities of her situation. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 44 Well, it messes with your mind. Understand. Yeah. Uh, sometimes you can get in that slump where if I did not have this, maybe I can be doing this, and if you do not snap out of it, it really will make you think horrible things and make you do wrong things. But umm, you can catch yourself to say, no baby, I am living a good life. (Participant 003) Most participants felt that getting into HIV care and feeling empowered to address their needs and concerns were less complicated once they accepted their situation. Participant 001 (age 53) stated, Well, I had to learn how to accept it. Cause in, one while, I was thinking I was the only one. So, I had to learn how to accept it. Participant 010 (age 69) mentioned, It is just the fact you have to realize that you have something that you do not want, and you cannot get rid of it. Also, when discussing accepting an HIV diagnosis, participant 004 (age 61) said, Um, living with HIV is what it is. I got it, and I cannot change it. Uh, I have to accept the thing I cannot change. Self-acceptance appeared to cover a large spectrum among participants. For some participants, self-acceptance also included forgiving others and loving themselves. Forgiveness and love led to feelings of inner peace and being able to love oneself and othersall of which were considered to improve mental health and optimal aging. Failing to forgive others was viewed by some participants as suppressed feelings that would later cause negative emotions or delay complete healing. Participant 004 (age 61) expressed, At the age of 61, man, I feel lovable. I feel love, and I return love. I got peace, and mostly, there is a lot of faith in me. She also shared her experience forgiving the person who raped and infected her with HIV. She stated, To forgive myself for one and to forgive the other person, you know, that gave it to me. Optimistic Attitude The importance of having an optimistic attitude was also a typical response among participants when asked how their diagnosis influenced critical aspects of their lives over time. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 45 Many participants stressed the importance of having a positive attitude and outlook. Most participants agreed that having an optimistic attitude influenced hopefulness and the desire to live a happy, healthy life. Participant 009 (age 68) mentioned how having an optimistic attitude influenced her outlook on life and aging optimally with HIV. Uh, as I got older, it is, um, it is okay. It is better. It is like I know more about it. And I am not as scared as I was when I first started. I first, you know, became HIV positive; it is like I was scared. It is like it was a death sentence. I figured I was going to just give myself six months to live. I knew I was going to die, be dead. It is, yeah, I am going to live now. Participant 007 (age 63) felt as if being diagnosed with HIV allowed her to have more of a positive attitude. She stated, I think it made me more positive. Further saying, "Yeah, it made me see life better and clearer than I did when I was young. Participant 009 (age 68) mentioned she advises newly diagnosed young women, "Everything will be okay. It is not bad as it seems. You know, and it is going to get better. I tell them it is going to work out. Participant 008 (age 62) mentioned, Just take everything into perspective. While participant 005 (age 67) stated, I have something that I know I am going to have to take medicine for the rest of my life, but it is treatable. Most participants believed that having an optimistic attitude increased their chances of experiencing optimal aging despite them being older and living with HIV. This belief was due to optimism providing the opportunity for individuals to think better and to do better. Participant 008 (age 62) said, If you think positive, you must think better. As they said, when you know better, you do better. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 46 Mental Strength Mental strength was also essential to be in your right mind." An overwhelming number of participants mentioned being mentally strong comprised of not moping, not getting in a pity pot," not losing your mind due to your age and diagnosis, and not experiencing a memory decline. Participants were asked to grade themselves on their ability to function mentally. They were also asked to grade themselves on a scale of 1 to 10 and explain why they scored as they did. Participant 002 (age 61) graded herself as a ten and explained that one of her reasons for doing so was her ability to learn how to get back up when she was knocked down. She stated: And when you talking about aging. That is because you want to sit there and age. But if you get up and try to do something, and try to, but I know when you dealing with the HIV thang, it is different because you go into a downward spiral because it is something that you was not looking for, so it is going to knock you down for a minute. But you got to learn how to get back up. You know what I am saying. Also referring to being mentally strong, participant 003 (age 69) stated, Not get in a pity pot. Feeling sorry for oneself or displaying emotions of defeat without the ability to recover were viewed by participants as lacking the mental strength needed to be in your right mind." Participant 005 (age 67) stated, "I do not go around here moping and saying, oh, I got HIV." Participant 002 (age 61) shared how her mental strength allowed her to adapt and adjust to aging while living with HIV. She recognized that if she were not in her right mind, she would need some help. She stated, Yes, I am in my right mind. When I am not in my right mind, somebody better go get me some help. I have not had those issues yet. In participant 004's (age 61) view, aging with HIV does not always impact mental health. Adding to her statement, she explained, "Well, just because I am up in age, that does not mean I have lost my mind." Not all AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 47 participants had positive responses or perspectives indicating they were in their right mind. Participant 006 (age 64) shared her view on feeling as if she were not in their right or best mind due to declines in memory by stating, Sometimes you start to forget things. Theme 4: Social Connectedness and Support This theme was divided into three categories: family and friend support, HIV disclosure/non-disclosure, and participating in constructive activities. Participants reported that help from family and friends, participating in constructive activities, and choosing whether to disclose their HIV status to others contributed to maintaining and developing social relationships. In addition, participants stressed how instrumental social connectedness and support were to them in experiencing optimal aging with HIV. Family and Friend Support There was a good deal of consistency among most participants when describing the importance of support from family and friends. Participants mentioned that having support made it easier for them to accept their HIV diagnosis and to adhere to their treatment plans since they did not have to hide their HIV medications. Participant 007 (age 63) stated, "When you first start, you do not, really want nobody to know, and you try to hide, you know, going to different places, who you live with, if you do not live by yourself, you hide your medication. Most participants who were asked about their social life and how family and friends support them reported positive experiences. Participant 002 (age 61) described her positive relationships with friends and family by saying, "Oh man, I have plenty of support. I have uncles, aunts, cousins, and everyone knows me." In like manner, participant 004 (age 61) responded by saying, "Um, being themselves. Knowing they do not have to tell me they love me. I know they love me for what they do for me." AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 48 Conversely, a few participants mentioned negative experiences with family and friends after being diagnosed with HIV. Participant 009 (age 68) shared the variations in her relationship with her oldest daughter versus her relationship with her youngest daughter. She stated, My youngest daughter is real supportive. She [youngest daughter] said, I ain't scared of you. She ain't [scared], but my oldest daughter is like standoffish. Like, we do not get along, you know, too good. Participants also explained the power of social connectedness and support. Participants elaborated on how social connectedness and support allowed them to access HIV treatment without fear, embarrassment, or shame. Participant 003 (age 69) stated, I use my network the way I should (implying her family and friends provide emotional, financial, and physical support when she needs it). Many participants mentioned their network utilization in some manner, which led many to express how their relationships tend to be intentional and based on preferences. According to most participants, these intentional relationships provided a sense of safety and understanding needed in relationships for HIV-positive persons. Moreover, participants discussed the importance of having relationships with someone who could relate to the experiences of aging with HIV. Participant 003 (age 69) stated, Well, I pick the people I be with and around. Participant 006 (age 64) also said, "HIV is a different circle that you be in. But it is not a bad circle. It is a good circle. In the same way, participant 008 (age 62) stated, They, you know, say little things or whatever, but most of my friends I do have are in my same situation. HIV Disclosure and Non-Disclosure From the participants' responses, they believed their perspectives of optimal aging with HIV centered around whom they could trust to disclose their status. When speaking about HIV disclosure/non-disclosure, participants had different views on disclosing. Some participants mentioned they have partners unaware of their positive HIV status. In contrast, some participants AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 49 stated they informed potential partners from the beginning. Participant 009 (age 68) mentioned, I think you should tell them off from the jump. You know, just be honest and tell the truth. And then that way, they can decide whether they want to talk to you or not. Participant 001 (age 53) expressed that optimal aging involves being socially connected and receiving support without explaining one's diagnosis. She stated, Where the point is, I do not have to say or explain myself to them, nobody. And that I should be able to go anywhere or do anything that a normal person [HIV-negative] can do. Participating in Constructive Activities Each participant described how engaging in constructive activities, especially with others, provided the tools necessary to feel like they had a sense of purpose. Participants mentioned having a sense of purpose as essential in optimal aging with HIV. Engaging in group sessions received an overwhelming response to optimal aging with HIV. Most participants talked about the positive impact group sessions had on their lives. As attested by participants, group sessions provided a place for participants to express themselves and discuss ways to improve their lives while living with HIV. Participants also shared that group sessions provided an opportunity for participants to engage in mentally stimulating activities. Through group sessions, participants formed social relationships and engaged in activities that gave them a sense of purpose by assisting other newly diagnosed women. Participant 002 (age 61) stated, You got to get into a group session. She further elaborated by saying: The best thing that will help you is you got to go to support groups. To learn it for yourself. That is the most important thing. Get into the support groups so they can teach you the ups and downs, and you can find out what you are looking forward to. Participant 010 (age 69) shared: AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 50 Just doing groups and what those groups do. They allow you to form, you know, certain friendships, and then people can give you tips on, you know, what they do to, um, that help them live a happy life. And then the groups, they give you something to look forward to. For most participants, a sense of purpose involved more than just attending group sessions. Participants described how being connected socially and having support allowed their sense of purpose also to include giving their time to their community. Participant 001 (age 53) mentioned, We like doing stuff for the communitydifferent stuff. We used to go to the building every Monday from 9-11. We would go for the Hope Group, you know. Participant 001 stated, "I would like to be able to go out and talk to young women, just young women that are coming up." Lastly, participant 004 (age 61) discussed how engaging in constructive activities provided a sense of purpose as one age with HIV. She stated, Instead of just moving on with their life because we all have something to do in our life as we go on the journey, and we just have to find the purpose of what it is to do. Theme 5: Keeping Yourself Up Keeping yourself up was a term directly expressed by most participants. Participants identified keeping yourself up as one of the positive components of optimal aging while living with HIV. Participants mentioned multiple things they considered as keeping yourself up." Among these were maintaining a good physical appearance, practicing good hygiene, eating a healthy diet, and exercising, setting goals, and engaging in pleasurable activities. Also, there was a consensus among participants that refraining from drug use played a role in the success of optimal aging. Consequently, participants believed that keeping yourself up facilitated optimal aging. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 51 Personal Appearance and Good Hygiene Participants were asked about the lifestyle changes made to facilitate their success in achieving optimal aging. Participants emphasized the importance of practicing good hygiene. Participant 001 (age 53) shared her experience with African American women with HIV presenting to their HIV care appointments, appearing "unkept" and smelly. She further explained that being unkept and smelly exacerbated the stereotypes against African American women with HIV. Participant 001 stated, Clean, take baths, and stuff like that. She also stressed, Go in there and take your bath and wash up or whatever. And be clean. You do not have to be down because of this. Participant 006 (age 64) shared her perspective on practicing good hygiene. She stated, So, I used to go make sure I washed my clothes. Even though I was out there in the streets living in my car and everything, I made sure I washed my clothes. Participant 005 (age 67) shared that the key to experiencing optimal aging is to continue doing what you are doing to maintain your appearance. She stated: You know, do not let, do not get down in the gutter. If you were there, pick yourself up because everything is actually free for you, food, clothes, everything. You do not have to look like you look, and there are some beauty shops. There is some barbershops that will cut their hair free. According to participant 006, she owns only one pair of sneakers because she wears heels everywhere and ensures her clothes are fashionable and coordinated. She shared: It is just like me. I got a pair of sneakers. Like today, I put them on today because I was going to get my other vaccination shot. But, if you see me when I go, I got heels on every day. Everyday. And believe it; the shoes are going to match the outfit I got on. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 52 Diet and Exercise Healthier habits such as diet and exercise were also described as essential components of optimal aging with HIV. Participants associated exercise and diet as direct factors in how well they maintained their HIV diagnosis and how well they aged. Participants described eating healthier and exercising as reasons that prevented them from dying, having a worse prognosis, or having limited functional abilities. Most participants had other co-morbidities such as high blood pressure, diabetes, obesity, and lung issues. During the interview, participant 009 (age 68) was asked what lifestyle changes facilitated her optimal aging with HIV. She replied, I try to, you know, take care of myself, exercise. We do a lot of walking. Try to eat healthily. Participant 002 (age 61) answered the question, saying, You have to listen. They gave me a chart. I stopped eating a lot of [fried foods], and I bake my food now. I do not eat a lot of fried foods. I eat a lot of vegetables. Subsequently, participant 009 said: Because, um, there is nothing really different from when I was [HIV] negative. If anything, it is better because now I exercise. I try to eat more of my vegetables. Try to be more healthy, and take my medicine like I should. Continuing to Establish Life Goals and Doing Things That Make You Happy Continuing to establish life goals and doing things that make you happy were two critical components to "keeping yourself up mentioned by participants. Participants shared that experiencing optimal aging while getting older with HIV included seeing life as a positive continuation despite having a disease that negatively affects a persons life. Participants explained how doing things that make you happy makes positive and happy emotions a reality, leading to optimal aging and a happier life. Elaborating on the perspective of continuing to establish life goals, participant 003 (age 69) stated, Get out there and challenge yourself. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 53 Participant 010 (age 69) voiced, Come up with a goal. Participant 004 (age 61) shared, I am still willing to take a chance on learning, just using my mind to think about other things than just not on myself. About what can I do for somebody else along the way. In addition, participant 007 (age 63) stated, What is the use in sitting down and worrying when you can just go on about your business? Do something better or do something else. Throughout the interviews, participants expressed how doing things that made them happy positively affected their current mindset, outlook on life, and perspectives on optimal aging. Along with continuing to establish life goals, doing things that make you happy was common among participants when sharing their views on "keeping yourself up." Participant 005 (age 67) mentioned that a facilitator for optimal aging for her included "To keep doing what you are doing to keep yourself happy. When providing advice on doing the things that make you happy to "keep yourself up," participant 008 (age 62) stated: You know, um, go out and continue to do, visit, um, just do all the things that make you happy, whatever makes you happy. That is what you continue to do. Because once you lose those things, they are not making you happy anymore, you, you, you, you start worrying, then they will affect your health. Lastly, participant 002 (age 61) mentioned, Life still goes on regardless of what the situation is. You can be old; you can be young. It is what you put in it. That is what you are going to get out of it. Theme 6: Being Kept by God "Being kept" by God emerged as an overarching theme among participants when discussing how spirituality played a role in their experiences of aging with HIV and how they perceived optimal aging. Based on the participant's responses, the theme of being "kept" by God was divided into two sub-themes: spirituality and faith. To be "kept" by God, participants AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 54 explained that one must maintain a relationship with God and trust that God will always provide grace and mercy. More than anything else, spirituality and faith gave participants the strength to overcome the challenges of aging with HIV and the power to live. Spirituality When asked how spirituality plays a role in their life experiences and how they age with HIV, an overwhelming number of participants stated verbatim, Being "kept" by God. Participants voiced that spirituality is vital to experiencing optimal aging. They expressed how having a relationship with God provided them the comfort needed to have inner peace and resilience after being diagnosed with HIV. Participant 003 (age 69) stated, He [God] turned me around. He told me to get up, look in the mirror, and look at yourself. This is not you, and you can do something about it. You know, and I did." Participant 004 (age 61) shared: I just love to call on the Lord and tell him to guide me through the day because I cannot do it by myself. And so, I know he has put people in my life to help me along the way. Participant 007 (age 63) shared how her relationship with God made her feel as a person aging with HIV. She stated, "And just sitting down reading the Bible, listening to God. It makes me feel like I am an older person that's listening to God, that is going to Heaven." Participant 007 mentioned that some people think HIV is a punishment for sin, but to her, the fact that God loves her despite having HIV represents aging optimally. Faith Participants distinguished faith as a must-have component to experiencing optimal aging living with HIV. They discussed how faith differed from spirituality because a person could believe in God and be spiritual but not have a strong sense of faith. An overwhelming number of participants described faith as depending on God by trusting He [God] will provide healing and AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 55 comfort during times of uncertainty, conflict, or illness. Several participants voiced how faith provided the will to live and the courage to fight HIV even when doctors gave up on them. Participant 008 (age 62) shared her experience of doctors in New Jersey sending her home to Alabama to die after being diagnosed with HIV. Participant 010 (age 69) stated: I do know that if I did not believe in God, I do not think I would have made it through like I did. I probably would have lost my mind and not been able to go on like how I am able to go on now. Participant 006 (age 64) stated, You got to have faith, so yeah, it is more, the older I get, the more, the more I have faith in Him [God]. Many participants verbalized how important depending on God is while aging and living with HIV. Participants talked about how they cannot trust medicine or humans. Participants revealed that family, friends, and healthcare professionals could abandon them, but God would not. Participant 001 (age 53) stated, "The Lord plays a big role in my life because I depend on the Lord all the time. You cannot depend on man; you have to depend on the Lord because man is not doing nothing. Nothing at all." Lastly, participant 008 (age 62) described the extent of her dependence on God. By relying on God, she is assured that her life is fulfilled, which correlates to her perspective on optimal aging., "So, if I died today, it is okay. So, I guess there is nothing else to say in that area. I mean, because I lived." Theme 7: Adjusting to Your New Normal Adjusting to your new normal was common among participants. Subthemes included coping and adaptability and internalized and externalized HIV stigma. Because HIV is an incurable disease, participants considered living with it as their new life until death. Interviews with participants revealed a significant correlation between overcoming challenges and experiencing optimal aging with HIV. As participants described, overcoming challenges required AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 56 more than accepting being diagnosed with HIV and ignoring negative behaviors and attitudes from those unfamiliar with HIV. Moreover, one must possess a strong sense of self-love and a strong desire to live to adjust to their new normal effectively. Coping and Adaptability Through Loving Yourself During each interview, all participants shared how overcoming challenges after being diagnosed with HIV impacted their ability to experience optimal aging. Participants shared that learning to love themselves more after being diagnosed with HIV and having the will to live played a crucial role in overcoming the challenges older African American women with HIV face. Among the participants, overcoming challenges involved adjusting to a difficult situation, such as HIV, to overcome depression, cultivate optimism, and overcome the odds most HIVpositive individuals face. Participant 008 (age 62) mentioned: It made me more outspoken, more outgoing, to care about me, to care about my health, to care about who I am. I love me because I, I did not love me. I love me. And I love who I am today. Participants were asked to share how they overcame adversity and adapted to their HIV status. Participant 005 (age 61) stated, I had to adapt because if I had not, I would have gone into a depression. I would have started drinking, probably taking drugs, but I had to get control of the situation that had infected me. Participant 002 (age 61) stated, Either you want you to live, or you want to die; it is up to them. Participants discussed how the will to live provided them with the drive to beat HIV instead of HIV defeating them. They discussed how pushing themselves and prioritizing their health enabled them to age gracefully and live longer with HIV. Participant 008 (age 62) stated, I push myself as well. Participant 001 (age 53) stated, Cause at first they sent me home in a AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 57 wheelchair, and I said oh no. I said I was going to get on this walker, and I have been on this walker ever since. Likewise, participant 002 (age 61) stated, Life keeps going on. I just keep moving. Apart from this, when speaking about pushing themselves, participant 008 (age 62) said, So, I just had to keep it moving when I found out it was real. When mentioning the need to put oneself first to experience optimal aging, participant 004 (age 61) stated, I got to worry about me first. Taking care of myself first. Externalized and Internalized HIV-Related Stigma Several participants described how HIV-related stigma affected their daily lives and their ability to cope with HIV-related stigma. Based on participants' responses, HIV-related stigma affected them on a personal level, family/friend level, healthcare level, and societal level. Participants talked at length about how HIV-related stigma impacted how they formed relationships and how they viewed themselves. Some participants even shared that they experienced HIV-related stigma from doctors and nurses providing their HIV care. When participants were asked about internalized HIV-related stigma and how it affected their feelings, participant 001 (age 53) stated: I have been through a lot of pain. I have been through a lot of people looking down at me and [inaudible] a different type of way when they find out I am [HIV] positive. They do not want to touch me. I have to go through all that, even with doctors, nurses, or whatever. I have a lot of what you call it stigma. Participant 004 (age 61) described how internalized HIV-related stigma initially affected her by stating, At first, I was ashamed. In response to a question about externalized HIV-related stigma and how it affected their feelings, participant 005 (age 67) said: AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 58 I could say for myself; it is hard because people put, if anybody finds out, they put labels on you and label you, and um, I think they should learn more about it, and they make you feel so bad. So, in our community, it is worse. Participant 006 (age 64) described the attitudes of her family when she was first diagnosed with HIV. That first year my brother and them, my brother and his and wife, they were kind of scared. They came into the hospital. I always think back to when I first got diagnosed; they came in there masked down. I said what is wrong with yall. Ain't nothing wrong with me. Yall are more dangerous to me than I am to you. When asked about effectively addressing HIV-related stigma, participant 004 (age 64) stated: Taking care of myself first. Get rid of all that stigma; it is just like a layer of onions. Anything, an orange, you have to peel; you have to constantly peel something off every day. Being looked down on, and sometimes people turning their noses up. Participant 005 (age 67) stated, about effectively addressing HIV-related stigma, "I mean, everybody is not going to accept you have it [HIV]. Participant 009 (age 68) shared that HIVrelated stigma does not affect her as it once did. However, she continues to have anxiety when disclosing her HIV status. She stated, I do not have that fear anymore, you know, not as much. So, I can say the only time I have a little fear, I say ugh, I got to tell him I am HIV positive." In their descriptions of optimal aging, participants wished they could live like HIVnegative individuals. Participant 007 (age 63) stated, And live, just live like regular folks. Just live. That is the way I look at things. I am a regular person, and I am just living, you know. Participant 009 stated, I mean now, it is just like living like any other normal person that was negative. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 59 Discussion and Conclusion Current literature on HIV and aging is emerging (Sankar et al., 2011). However, women with HIV 50 and older remain underrepresented in research (Rubtsova et al., 2019). This study aimed to explore the meaning of optimal aging among African American women 50 and older living with HIV in the Southern United States by focusing on the perceptions of optimal aging across the physical, functional, cognitive, emotional, social, and spiritual domains. The researcher identified themes and subthemes based on the participants' lived experiences. Social and structural factors such as age, gender, race, health care, and socioeconomic status were associated with optimal aging among older African American women (Subramanian et al., 2017; Bradley et al., 2018; Sutton et al., 2017). A visual representation of the correlation between the themes, sub-themes, and social and structural determinants of optimal aging with HIV in African Americans over 50 is provided in Figure 1. By following the themes and subthemes that have been identified, African American women with HIV can achieve optimal aging through HIV care and support services that are culturally appropriate and tailored to their specific needs. Staying Healthy with HIV Taking Responsibility for Your Health Viral suppression remains the most desired outcome when managing HIV-positive patients (Opoku et al., 2022). Most participants in the current study described taking responsibility for ones health as essential to managing viral suppression and overall health while aging with HIV. It was deemed a monumental accomplishment for participants to have an undetectable viral load. One of the main ways to obtain an undetectable viral load is by adhering to medical treatments and care. Participants indicated that being compliant with HIV medications, using HIV care services, and having a voice in health care decisions were critical aspects of optimal aging. There was a consensus among participants that taking prescribed AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 60 medications and attending scheduled appointments are two crucial components of viral suppression. In addition to dealing with co-morbidities, some participants in the current study experienced adverse side effects from prescribed medications. For this reason, participants mentioned feeling empowered and satisfied when allowed to speak to their HIV care providers about stopping or starting a particular medicine. The current studys results align with those obtained by Boehme et al. (2012) on HIV-infected women in the deep rural South. Participants in Boehme et al. (2012) found that patients viewed providers as caring if they let them voice their concerns regarding managing their disease. Among participants in the current study, taking responsibility for their health also included utilizing other HIV care services. Participants described other HIV care services, such as transportation to and from medical appointments, food boxes, housing, and financial assistance. Thus, HIV care services, such as housing, food, transportation, financial aid, case management, and medical care, are critical to optimizing chances of a better quality of life. The findings in the current study resonate with a qualitative study by Mitchell et al. (2022) on older African Americans living with HIV. Mitchell et al. (2022) found a similar theme among participants who identified positive experiences relating to HIV care with improved outlooks on life, greater support, and enhanced well-being. Likewise, Lambert et al. (2018) completed a systematic review of qualitative studies to assess adherence to HIV care in Black women. The authors found factors such as healthcare providers failing to listen, limited access to public transportation, food, shelter, and lack of resources associated with adherence to recommended care plans. The attitudes and beliefs expressed by participants in this study regarding behaviors related to adhering to HIV treatment can be applied to the theory of planned behavior. The AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 61 World Health Organization (WHO) defines adherence as the degree of an individual's behavior, such as dieting, exercising, and following treatment regimens recommended by a healthcare provider (Sabate, 2003, as cited in Rich et al., 2015). Rich et al. (2015) explained that one of the fundamental precepts of the theory of planned behavior is that a person's behavior is predicted by that person's intention to carry out the behavior. The authors also found that perceptions of positive and negative views of behavior, social pressure, and perceived control influence a persons intentions. In the current study, participants not only viewed adhering to HIV treatment regimens and utilizing HIV care services as critical components to optimal aging, but they also viewed them as their means to be as close as possible to having a HIV-negative status. Participants believed HIV-negative individuals were more likely to accept them if they followed HIV treatment regimens and received HIV care services. A study using the theory of planned behavior that yielded similar results found that participants who perceived the difficulty as low were more likely to take dietary supplements for HIV treatment (Lino et al., 2014). Moreover, when a reputable individual or group deemed taking dietary supplements necessary, participants were more inclined to take them (Lino et al., 2014). Participants in the current study did not specify whether their intention to engage in these behaviors was to enhance their general health or lessen the stigma attached to HIV and gain the acceptance of HIV-negative people. Notably, the women in the Lino et al. (2014) study were from California, aged from 26 to 73 years of age. The women in the current study were from Birmingham, Alabama, in the Southern United States. Birmingham is different from California due to the social and structural determinants, injustice, poverty, racism, and unequal opportunities in education and employment associated with particular geographical locations (Sutton et al., 2017). The current study also found that AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 62 difficulty in performing the behavior was a significant factor in addition to perceived behaviors. Participants discussed difficulties adhering to any HIV treatment regimen if they must hide their medications depending on whom they live with and where they live. Feeling and Looking Younger Than Your Actual Age Self-perception of aging significantly predicts quality of life (Nieves-Lugo et al., 2020, p. 1). For participants in the current study, self-perception included appearing younger to others and having a positive perspective about aging well with an illness. Participants believed they looked younger than their actual age, and others' judgments of them solidified their beliefs. According to (Barrett, 2003, as cited in Nieves-Lugo et al., 2020), individuals who perceive themselves as older than their chronological age are more likely to anticipate negative health behaviors. Despite their chronological age, most participants in the current study took pride in appearing younger than their actual age. An individual's age, identity, and perception of aging can influence their motivation to engage in chronic illness self-management behaviors (Stoff et al., 2016). Rubtsova et al. (2017) found that most HIV-positive women aged 50 and older in the United States do not view age as a chronological number but rather as a state of mind. Among African Americans, "black don't crack" refers to those who appear younger than their age or do not exhibit external signs of aging. There was a feeling of pride among participants in the current study that they did not look their age, with one participant mentioning the phrase "black does not crack." Likewise, participants felt strongly about how well or poorly they perceived themselves aging with HIV and other co-morbidities. In a study by Warren-Jeanpiere et al. (2014) on African American women aging with HIV and co-morbidities, participants reported feeling younger than their chronological age, which was associated with the women wishing to remain youthful. In that AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 63 same study, there was a consensus among all participants that they did not identify as being older (Warren-Jeanpiere et al., 2014, p. 5). The current study's results showed that participants perceived looking younger than their age as an indication of optimal aging while living with HIV. Although the reason for this is unclear, participants in the current study seemed to find that a youthful appearance counterbalanced any negative perceptions of their health. Participants in the current study also seemed to associate optimal aging with the ability to function independently by engaging in activities such as driving, living alone, completing daily tasks, and even getting dressed independently. This observation was not surprising as limits to functional ability can hinder an individual from completing daily tasks, accomplishing goals, and engaging in social life. One participant mentioned how being on oxygen and being required to carry an oxygen tank everywhere limited her ability to do the things she loved doing. The participant associated her limitations with being a prisoner, which affected her ability to experience optimal aging. Being in Your Right Mind" Mental health issues such as depression, anxiety, and posttraumatic stress symptoms negatively impact the well-being and quality of life of women with HIV (Waldron et al., 2021). By understanding how African American women with HIV are affected by mental health issues as they age, other aging women with HIV can benefit from the study. Participants stressed the importance of being in your right mind. African Americans use the term "your right mind" to describe a mentally stable and conscious individual. Participants mentioned that remaining mentally strong, accepting their diagnosis, having a positive attitude, having a positive outlook on life, and not experiencing much decline in memory were all factors that created a mindset AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 64 conducive to optimal aging. Most participants said self-acceptance is the first step towards being in your right mind" after being diagnosed with HIV. Many participants discussed their experiences of accepting themselves as they are and accepting how they acquired HIV. The responses in the current study resonated with a study by Psaros et al. (2015) examining the reflections on living with HIV over time in women over 50. Psaros et al. (2015) found that accepting an HIV diagnosis resulted in a positive change in the perception of what it means to live with HIV and provided a sense of appreciation of life and the perspective gained because of their diagnosis (p. 124). Emlet et al. (2011) found similar results in HIV-positive participants 50 and older, where they shared feelings of being okay with who they were and accepting that they are aging with HIV. Participants in the current study did not mention having any confirmed diagnosis related to their mental health. However, they shared having symptoms of mental health issues such as depression, feeling miserable sometimes, and being in denial. As a result, participants seemed to focus on positive things, such as changing their views. One participant mentioned that she was initially ashamed, hurt, felt much pain, and depressed. She then mentioned that now at 61, she feels lovable, loves in return, has peace, and has faith. There was an initial lack of self-love among participants in the current study after being diagnosed. According to Hampton and Gillum (2020), HIV-positive individuals initially had low self-love. They later developed the ability to adapt and grow, which aligns with the participant's responses in this study. The current study discovered that participants used self-taught redirection techniques to manage lingering negative thoughts. However, some studies suggest African American women with HIV manage their mental and cognitive health through family or church (Ebor & Jackson, 2020; Lassiter & Poteat, 2020; Messer et al., 2020). As interesting as it may be that participants in the current study AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 65 utilized self-taught redirection over seeking professional help, this concept is not new among African Americans. Similarly, Ward et al. (2013) found that African Americans believe their mental health problems will resolve themselves, which creates a barrier to seeking mental health care. Some participants in the current study identified cognitive problems such as a decline in memory by stating, "sometimes you start to forget things." As noted by Vance et al. (2013), adults aging with HIV will experience a combination of age-related and HIV-related cognitive declines resulting in forgetfulness and cognitive problems. It is essential to consider that aging alone does not contribute to cognitive declines and forgetfulness in individuals with HIV. According to the findings of the current study, African American women living with HIV may be able to achieve optimal aging by enhancing their positive thinking skills and receiving professional mental health care. Social Connectedness and Support Social connectedness and support are associated with lower levels of depression, higher self-esteem, and happiness (Nguyen et al., 2016). As perceived by the participants in the current study, social connectedness and support encompassed maintaining positive relationships with family and friends, disclosing or not disclosing their HIV status, participating in constructive activities like group sessions, and participating in purposeful activities. In the current study, there were some positive associations with family support among participants. In contrast, some participants had close family and friends that did not want to associate with them because of their positive HIV status. Some participants could utilize their family network, which played a part in increased self-esteem for participants with support. Participants with HIV who lost family and friends due to negative attitudes felt isolated because of their desire to be with those they love. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 66 Nguyen et al. (2016) found that social connectedness positively impacts older adults' mental and physical health. Nguyen et al. (2016) also pointed out that persons reporting low family closeness and contact had the lowest levels of life satisfaction (p.12). Dale & Safren (2018a) suggested that Black women living with HIV found that social support from members of their "village" helped to foster resilience (p. 8). Participants from the current study mentioned having social support. However, they did not necessarily rely on social support to help them cope and adapt. Due to the stigma associated with HIV in the Southern United States, people may not be able to rely on social support to assist them in coping with HIV. Although the opportunity for social connectedness and support may be true for some, it is essential to note the geographic area where participants live. HIV-related stigma is deeply rooted within the Southern United States, sometimes hindering individuals from disclosing their HIV status to anyone, even family. The Deep South, including the state of Alabama, tends to be impacted more by HIV-related stigma due to the southern states being more socially conservative (Stringer et al., 2016). In addition to HIV-related stigma from living in the Southern United States, several participants shared experiencing HIV-related stigma within their families, friends, communities, and healthcare providers. A prior study by Fletcher et al. (2016) supported this result. According to Fletcher et al. (2016), regarding HIV/AIDS stigma among African American women living in the South, HIV-positive African American women are susceptible to multilevel HIV stigma in various settings and contexts across multiple domains. In the current study, HIV disclosure/non-disclosure played a significant role in how participants created friendships and with whom they created them. Most participants avoided sharing their HIV status out of fear of stigma. There was a perception that family members might reveal their HIV status to others for spiteful reasons. According to previous studies AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 67 (Sangaramoorthy et al., 2017), disclosing a positive HIV status to family members increased stigma that significantly impacted the lives of older Black women. Most participants in the current study mentioned they do not develop friendships outside of their HIV support group, comprised of HIV-positive women similar in age. Only two women out of the ten mentioned they were in steady relationships. Participants stated they are selective of the people they choose to be around or let in their social circle. Participants' responses suggest that social connectedness and support needs vary based on the individual's current situation, conditions, and history. Dale and Safren (2018a) also found that HIV-positive Black women benefited from social support from other HIV-positive women. In the current study, participants shared their experiences attending group sessions with HIV-positive women and engaging in constructive activities, such as helping other women with HIV. Participants described group sessions as the best thing that helped teach them the ups and downs of living with HIV. As a result of group sessions, participants formed friendships with other women living in similar circumstances, allowing them to gain advice from others on how to age optimally. The findings from the current study are consistent with Dale and Safrens (2018a) findings which found that social support from HIV-positive peers provided a sense of protection from HIV-related stigma and allowed women to learn valuable coping skills. Most participants in the current study mentioned having a sense of purpose through volunteering, being active members of organizations for HIV-positive women, and going out to talk to young women about ways to prevent HIV. This finding from the current study matches those observed in earlier studies that show HIV-positive persons 50 and older expressed desires to give back to their communities and educate younger generations on HIV and AIDS by sharing their personal experiences (Emlet et al., 2011). The current study's findings strongly imply that to AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 68 promote optimal aging in this population, group sessions that allow the women to develop friendships with other HIV-positive women may prove beneficial and increase the chances of aging optimally. Promoting optimal aging in older African American women 50 and older also includes establishing and maintaining positive relationships with family and engaging in constructive activities that provide a sense of purpose. Keeping Yourself Up Participants mentioned that keeping yourself up is essential to experiencing optimal aging. In the current study, keeping yourself up is comparable to self-care. Self-care is taking care of oneself using a focused set of actions to enhance mental and physical health (Barroso, 1995, as cited in Tufts et al., 2010). From participants' responses in the current study, not only should self-care include a focused set of actions, but it should also include a focused set of thoughts, especially since the mindset was a significant catalyst in participants taking action to care for themselves. Participants affirmed that keeping yourself up expanded across a large spectrum of self-care activities to improve or maintain optimal aging. Practicing good hygiene, having a decent appearance with clothing and hair, exercising, eating better than before, coming up with goals, and avoiding stressors were also essential components of keeping yourself up. Engaging in self-care behaviors such as taking baths, and utilizing resources offered to individuals with HIV, such as free clothes, food, and hairstyling services, were also mentioned as components of self-care by participants. Several participants said how a person presented to their doctor's appointments affected how providers treated that person. Participants in the current study believed that since having HIV made them more susceptible to experiencing HIV-related stigma, being presentable decreased the chances of experiencing additional HIV-related stigma. Similarly, Tufts et al. (2010) found that pampering was a common theme among participants in a AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 69 study on the self-care behaviors of African American women with HIV in a Southeastern United States metropolitan city. Participants in that study recognized pamperings, such as maintaining hairstyles, manicures, pedicures, and shopping, as caring for the mind, body, and spirit (Tufts et al., 2010, p. 42). Participants in the current study also stressed the importance of exercising and eating healthier. Proper nutrition and physical activity can improve an individual's immune function and decrease complications associated with HIV (Somarriba et al., 2010). Participants opposed older women with HIV taking recreational drugs and hanging out. Participants believed a significant part of "keeping yourself up" is setting life goals and doing things you enjoy. This finding is directly in line with previous results in the literature. In a study by Emlet et al. (2011) on resilience in aging with HIV, maintaining a healthy diet, exercising, refraining from drug use, avoiding partying all night, and keeping future-mindedness were all common responses by participants. The theme of optimism, which included looking forward to what life had to offer and having goals and aspirations, was common among African American women living with HIV in a study by Subramaniam et al. (2017). The results of the current study cast light on ensuring that the "self" is taken care of to the best of one's ability as a contributing factor in the facilitation of optimal aging. Taking care of oneself is accomplished through practicing good hygiene, having a decent appearance with clothing and hair, exercising, eating healthier, continuing to develop goals, and avoiding stressors. Being "Kept" By God Spirituality was an emerging theme in this study because all participants expressed that having a relationship with God was meaningful. In a study of healthy aging in older women with AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 70 HIV, Rubtsova et al. (2017) also found spirituality and a relationship with God as a common theme. Being "kept" by God was expressed by participants as God's way of providing grace and mercy, blessings, protection, healing, and inner peace. There were many ways in which participants believed God was keeping them, much like the findings of other studies, which found that the meaning of spirituality among African American women can vary even among women from the same background and culture (Dalmida et al., 2012). Many participants in the current study expressed gratitude to God for saving them from death, AIDS, and hospitalization while engaging in destructive behaviors after being diagnosed with HIV. According to participants, God "kept" them from experiencing negative consequences for engaging in such negative behaviors. The current study's findings strongly agree with those of Dalmida et al. (2012), who found that many HIV-positive African American women believe that despite engaging in high-risk behaviors and being HIV-positive, God gave them a second chance. In some way, most participants in the current study thought being diagnosed with HIV was either a blessing in disguise or the catalyst that brought them closer to their spirituality and God, leading them to change their negative behaviors. In addition, these findings are consistent with those of a study investigating the spirituality of aging with HIV, which found that participants were more satisfied in their lives after being diagnosed with HIV (Vance et al., 2011). A separate study found that older African American women with HIV reported positive feelings about their HIV status, citing that it gave them a sense of purpose and empowerment (Cherry et al., 2018). Participants expressed strong faith in God to the extent that they could not do anything without him and entirely relied on God over man. The current study found significant positive associations between participants' faith in God and their belief in their ability to survive HIV. To AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 71 achieve optimal aging and ensure their survival throughout life, participants lived by having faith in God. Each participant credited God as the reason they are alive and healthy. Gordensky et al. (2015) examined psychosocial factors impacting older women living with HIV in social and spiritual relationships and found that participants felt God gave them the strength to maintain healthy behaviors like taking medications, stopping drug use, and managing comorbid conditions. The current study showed that participants' relationship with God and faith significantly improved optimal aging. Additionally, participants were empowered by being "kept" by God to stop harmful behaviors and sustain positive ones. Adjusting to Your New Normal This study showed a noticeable correlation between coping, adaptability and experiencing optimal aging. Participants identified coping and adaptability as key factors to overcoming challenges to effectively manage stress, anxiety, depression, and other issues negatively affecting their quality of life. Adjusting to your new normal was described by participants as coping and adapting to an unfortunate situation to avoid depression, maintain a positive attitude, and overcome unfavorable odds and challenges. The current study's findings were consistent with those of Fletcher et al. (2020) on resilience and treatment outcomes among HIV-positive women in the United States. In the study by Fletcher et al. (2020), women identified resilience as motivation to resist negative feelings and promote healthy behaviors. Furthermore, most participants in Fletcher et al. (2020) were approximately 50 years of age and identified as non-Hispanic black women with HIV. They were recruited from Birmingham, AL, and Jackson, MS, in the Southern United States. Having the will to live and learning to love oneself more after being diagnosed with HIV resonates with the findings from a study by Emlet et al. (2011) examining the resilient AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 72 characteristics across the lifespan among older adults 50 and over with HIV. Participants in the current study also identified learning to love oneself more after being diagnosed with HIV and having the will to live as essential factors in experiencing optimal aging. Emlet et al. (2011) found that participants recognized self-acceptance in the form of loving themselves and doing what is needed for themselves as being central to overcoming the adverse effects of HIV and the complexities of aging with such a stigmatizing disease (p. 105). Qualitative studies have shown that African American women with HIV experience debilitating HIV-related stigma, resulting in diminished psychosocial functioning and decreased antiretroviral adherence (Lipira et al., 2019a). The current study's findings suggest that HIV-related stigma is detrimental to older African American women as it causes shame, pain, embarrassment, and personal resentment, preventing them from experiencing optimal aging. Participants shared their experiences with externalized HIV-related stigma, such as doctors and nurses not wanting to touch them. Moreover, the literature suggests that HIV-related stigma affects adherence to HIV care and treatment recommendations (Lipira et al., 2019a). In their responses, participants expressed their experience of HIV-related stigma on a personal, family, and friend level as well as a healthcare and societal level. Hence, to effectively address HIV-related stigma, individuals must value themselves, put themselves first, accept that not everyone will accept their diagnosis, and live to improve their physical, mental, spiritual, and emotional well-being. In line with the literature, participants stressed the connection between adherence to HIV care and treatment and optimal aging. The current study suggests that interventions and policies that promote optimal aging in African American women 50 and older should be culturally appropriate and tailored to facilitate optimal aging. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 73 Limitations This study, like any other, had its limitations. There was a risk of researcher bias in this study since the primary researcher works in the field of sexually transmitted diseases, including HIV/AIDS. The organization where the primary researcher works collaborates with the UAB 1917 Clinic and the UAB Family Clinic to ensure continuity of care for individuals diagnosed with HIV. Participants receive HIV treatment at the UAB 1917 Clinic or the UAB Family Clinic. Therefore, each participant was informed that the study had no connection to UAB or any other organization in Alabama. Furthermore, the primary researcher had no prior contact or relationships with any participants in this study. Additional procedures were also in place to alleviate researcher bias during data collection and analysis. These procedures included an audit trail, reflexivity throughout the data analysis process by keeping a journal, and member checking. Due to the sensitive nature of HIV, snowball sampling was used to reach a population that would otherwise be difficult to recruit. There was no guarantee that the study sample was representative of the larger population because all participants were members of the same HIV support group. In addition, all participants were from Birmingham, Alabama, rather than from different parts of the Southern United States. Snowball sampling, however, can lead to sampling bias. Implications for Practice and Future Research The primary purpose of this study was to explore the meaning of optimal aging among African American women 50 and older with HIV in the Southern United States. Despite the limitations mentioned above, the results of this study can be helpful to HIV care providers, social workers, community health educators, and community-based organizations that provide services for older African American women with HIV. In addition, this study can offer an HIV care model tailored to older African American women interested in experiencing optimal aging while AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 74 managing HIV and other co-morbidities. According to Adam et al. (2018), people with HIV experience accelerated aging; therefore, the care of older women with HIV should include patient-centered approaches to manage their HIV and other co-morbidities effectively. However, the healthcare system in the United States does not support a comprehensive approach to providing healthcare tailored to the needs of women with HIV (Adam et al., 2018). The need to design and implement culturally appropriate HIV services and policies for older African Americans with HIV is also demonstrated in other studies (Sangaramoorthy et al., 2019). Research about how African American women with HIV perceive health disparities and inequities in HIV care is essential to developing practical and innovative HIV care interventions. Further consideration should be given to older African American women who do not perceive they are aging optimally. Considering the perspectives of older African American women with HIV who do not believe they are aging well may help researchers design, implement, and evaluate HIV care services to facilitate optimal aging. The findings of the current study suggested that group therapy with HIV-positive women who are similar in age and who can relate to living with HIV could improve the chances of older African American women with HIV aging optimally. Group therapy facilitates optimal aging through the exchange of ideas, advice, and resources. Similar research on the resilience of Black women with HIV found that social support from HIV-positive peers mitigates the effects of HIVrelated stigma, promotes healing from trauma, and provides valuable strategies for dealing with stressors effectively (Dale & Safren, 2018b). Future qualitative studies involving older HIVpositive African American women who have participated in group therapy in the past could provide insight into how group therapy can be tailored beyond the standard care currently provided by healthcare providers. AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 75 Conclusion The challenges associated with HIV and disadvantageous life experiences, including childhood trauma, economic hardship, domestic violence, gender, and race, tend to have a more significant negative impact on HIV-positive African American women living with HIV in the Southern United States (Qiao et al., 2019). However, despite getting older with HIV and facing challenges associated with HIV, African American women 50 and older living in the Southern United States can achieve optimal aging. Using the themes developed from participants' lived experiences, factors that facilitate optimal aging include taking responsibility for their health, feeling, and looking younger, being socially connected and supported, maintaining their "right mind," being "kept" by God, and adjusting to their new normal. The identified factors that can facilitate optimal aging in African American women 50 and older are unique to the needs of older African American women living with HIV. Therefore HIV-related care and treatment services must be tailored and culturally appropriate to meet the individual needs of African American women aging with HIV. For older African American women with HIV to experience optimal aging, it is essential to understand the concept of optimal aging and its significance in planning and implementing HIV-related care and treatment services. Several studies have focused on successful aging, which is aging without disease or disability. Considering the case of someone viewed as not aging successfully, Brummel-Smith (2017) questioned whether it is acceptable to conclude that they have failed to age successfully. It is more valuable and realistic to describe the desired experience of growing old and coping with changes associated with aging and HIV as optimal aging (Brummel-Smith, 2007). The findings of this study could encourage HIV-positive African AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 76 American women aged 50 and older to maintain an optimal quality of life as they age, based on the study's focus on women in the Southern United States. African American women must have access to HIV services that facilitate optimal aging as they age. To maximize the effectiveness of HIV-related care and treatment services for older African Americans 50 and older, HIV care providers should consider the lived experiences of patients who are aging optimally with HIV. It is essential to consider the theory of planned behavior. Its importance should be recognized when making optimal aging the goal and outcome of HIV-related care and treatment services for older African American women with HIV in the Southern United States. By utilizing the theory of planned behavior, those who provide HIVrelated care and treatment services can identify noteworthy and fundamental beliefs that can be used to develop interventions targeting HIV-related care and treatment services within the population being studied (Lino et al., 2014). HIV-related care and treatment services should help older African American women living with HIV maintain spiritual wellness, physical and mental health, and social relationships. It is also vital that HIV-related care and treatment services help enable older African American women to look and feel better and reduce HIV-related stigma. 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Older African Americans and the HIV care continuum: A systematic review of literature 2003-2018. AIDS and Behavior, 23(4), 973 983. https://doi.org/10.1007/s10461-018-2354-4 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 89 Sankar, A., Nevedal, A., Neufeld, S., Berry, R., & Luborsky, M. (2011). What do we know about older adults and HIV? A review of social and behavioral literature. AIDS Care, 23(10), 1187-1207. https://doi.org/10.1080/09540121.2011.564115 Smith, T. K., & Larson, E. (2015). HIV sexual risk in older black women: A systematic review. Womens Health Issues, 25(1), 6372. https://doi.org/10.1016/j.whi.2014.09.002 Somarriba, G., Neri-Almeida, D., Schaefer, N., & Miller, T.L. (2010). The effect of aging, nutrition, and exercise during HIV infection. Research and Palliative Care, 2010(2), 191201. https://doi.org/10.2147/HIV.S9069 Stoff, D. M., Colosi, D., Rubtsova, A., & Wingood, G. (2016). HIV and aging research in women: An overview. 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Social determinants of HIV disparities in the Southern United States and in counties with historically black colleges and AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 90 universities (HBCUs), 20132014. PLOS One, 12(1), 1-12. https//doi.org/10.1371/journal.pone.0170714 The Lancet Healthy Longevity (2022). Ageing with HIV. The Lancet Healthy Longevity, 3(3), e119. https://doi.org/10.1016/S2666-7568(22)00041-1 Tillman, J.L., & Mark, H.D. (2015). HIV and STI testing in older adults: an integrative review. Journal of Clinical Nursing, 24(15-16), 2074-2095. https//doi.org/10.1111/jocn.12797 Travaglini, L.E., Himelhoch, S.S., & Fang, L.J. (2018). HIV stigma and its relation to mental, physical and social health among Black women living with HIV/AIDS. AIDS and Behavior, 22, 3783-3794. https://doi.org/10.1007/s10461-018-2037-1 Tufts, K.A., Wessell, J., Kearney, T. (2010). Self-care behaviors of African American women living with HIV: A qualitative perspective. 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A., & Brown, R.L. (2013). African American men and womens attitude toward mental illness, perceptions of stigma, and preferred coping behaviors. Nursing Research, 62(3), 185194. https://doi.org/10.1097/NNR.0b013e31827bf533 Warren-Jeanpiere, L., Dillaway, H., Hamilton, P., Young, M., & Goparaju, L. (2014). Taking it one day at a time: African American women aging with HIV and Co-Morbidities. AIDS Patient Care and STDs, 28(7), 372380. https://doi.org/10.1089/apc.2014.0024 Warren-Jeanpiere, L., Dillaway, H., Hamilton, P., Young, M., & Goparaju, L. (2017). Life begins at 60: Identifying the social support needs of African American women aging with HIV. Journal of Health Care for the Poor and Underserved, 28(1), 389405. https://doi.org/10.1353/hpu.2017.0030 World Health Organization (2020, July). HIV/AIDS. https://www.who.int/news-room/fact-sheet s/detail/hiv-aids Womack, J. A., Brandt, C. A., & Justice, A. C. (2015). Primary care of women aging with HIV. Journal of Midwifery Womens Health, 60(2), 146-225. https://doi.org/10.1111/jmwh.12236 Yehia, B.R., Stephens-Shields. A.J., Fleishman, J.A., Berry, S.A., Agwu, A.L., Metlay, J.P., Moore, R.D., Mathews, W. C., Nijhawan, A., Rutstein, R., Gaur, A.H., & Gebo, K.A. (2015). The HIV care continuum: Changes over time in retention in care and viral suppression. PLoS ONE, 10(6), 1-10. https://doi.org/10.1371/journal.pone.0129376 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Table 1 Participant Characteristics 92 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 93 Table 2 Themes & Example Quotes Theme Staying Healthy With HIVTaking Responsibility for Your Health Feeling and Looking Younger than Your Actual Age Being in Your Right Mind Social Connectedness and Support Keeping Yourself Up Being Kept by God Adjusting to Your New Normal Sub Theme Undetectable Viral Load Adhering to HIV Treatment Regimens Autonomy in Healthcare Decisions Self-Perception Functional Ability Self-Acceptance Optimistic Attitude Mental Strength Family/Friend Support HIV Disclosure/NonDisclosure Participating in Constructive Activities Personal Appearance and Good Hygiene Diet and Exercise Continuing to Establish Life Goals and Doing Things That Make You Happy Spirituality Faith Coping and Adaptability Through Loving Yourself Externalized and Internalized HIVRelated Stigma Participant Quotes "That is the only way to keep your immune system. See, you got to keep it and keep up on your numbers and stuff. So, you just got to do like the doctors tell you. And you got to take your medicine. You do not take the medicine; you end up down, and your immune system go be low. Medications may affect them [other older women diagnosed with HIV] in the same way, so they can tell, you know, this medicine worked for me. Um, so ask your doctor. Can you try that one? People really do not think I am 67. "I could be bedridden, but I am not. Being comfortable with what I am and how I got it. I have something that I know I am going to have to take medicine for the rest of my life, but it is treatable. "Well, just because I am up in age, that does not mean I have lost my mind." Oh man, I have plenty of support. I have uncles, aunts, cousins, and everyone knows me." I think you should tell them off from the jump. You know, just be honest and tell the truth. And then that way, they can decide whether they want to talk to you or not. We like doing stuff for the communitydifferent stuff. We used to go to the building every Monday from 9-11. We would go for the Hope Group, you know. Go in there and take your bath and wash up or whatever. And be clean. You do not have to be down because of this. I try to, you know, take care of myself, exercise. We do a lot of walking. Try to eat healthily. I am still willing to take a chance on learning, just using my mind to think about other things than just not on myself. About what can I do that for somebody else along the way. He [God] turned me around. He told me to get up, look in the mirror, and look at yourself. This is not you, and you can do something about it. You know, and I did." You got to have faith, so yeah, it is more, the older I get, the more, the more I have faith in Him [God]. It made me more outspoken, more outgoing, to care about me, to care about my health, to care about who I am. I love me because I, I did not love me. I love me. And I love who I am today. So, I can say the only time I have a little fear, I say ugh, I got to tell him I am HIV positive." AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Figure 1 Visual Representation of Themes 94 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Appendix A Notification of Exemption Determination 95 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Appendix B Recruitment Message for Social Media 96 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Appendix C Study Information Sheet 97 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 98 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 99 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Appendix D Study Recruitment Flyer 100 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV Appendix E Demographic and Background Information Participant 1. What is your age? 2. What is your sex? 3. What is your ethnicity? 4. What year were you diagnosed with HIV? 5. How long have you lived in the South? 6. Are you actively in care for your HIV diagnosis? 7. How long have you been taking antiretroviral medications? 8. Where do you receive HIV treatment services? 9. What is the highest level of education you have completed? 10. Are you currently employed? 11. What is your marital status? 101 AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 102 Appendix F Semi-Structured Interview Guide Hello, my name is ____________. I am a Doctor of Health Science student at the University of Indianapolis and the primary researcher for this project. I will be conducting this interview for my doctoral project. This interview aims to explore the meaning of optimal aging among African American women ages 50 and older with HIV in the Southern United States. The study will focus on the perceptions of optimal aging across the physical, functional, cognitive, emotional, social, and spiritual domains. I appreciate your participation and thank you for agreeing to be interviewed today; however, your participation is voluntary. The interview will include collecting demographic information and questions related to HIV, your life experiences, and aging. I want you to feel comfortable saying what you think and how you feel. There are no right or wrong answers during this interview. Everything you say today will be confidential, and portions of your interview may be used for the final research paper. However, no identifying information will accompany it. The interview will take 30 minutes to one hour. Writing everything down and engaging in an attentive conversation is difficult; therefore, the interview will be audio recorded. Do you have any questions about the interview or how the data will be used? By continuing this interview, your consent is assumed. You may terminate the interview anytime and skip any questions you prefer not to answer. 1. What is it like living with HIV? a. How would you describe being an African American female with HIV? b. Tell me what it has been like to be older with HIV. 2. What does optimal aging mean to you? a. In what way or ways would you define optimal aging? AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 103 3. If you had to explain what it means to experience optimal aging living with HIV and to be age 50 and older, how would you do so? a. What are your feelings about optimal aging among someone with HIV versus someone who is HIV-negative? b. Tell me about the challenges to achieve optimal aging while living with HIV. c. What lifestyle changes have you made to facilitate your success in achieving optimal aging? 4. If you had to grade yourself on your ability to function at your best physically, functionally, cognitively, socially, and spiritually, describe how you would grade yourself and why? a. Tell me about what you do physically. b. What is it like to meet your basic needs and be mobile? c. I am wondering how you feel about your cognitive health. d. Tell me about your social life. How do your family and friends support you; how do you maintain relationships living with HIV, and in what ways do you contribute to society? e. In what way does spirituality play a role in your life experiences and how you age with HIV? 5. Tell me a little about how you believe living with HIV may have influenced critical aspects of your life over time. a. How has being an African American woman with HIV influenced the course of your life and how you age? b. In what ways have you adapted to your positive HIV status? AFRICAN AMERICAN WOMEN & OPTIMAL AGING WITH HIV 104 c. Tell me how you overcame adversity related to being an older African American woman living with HIV. 6. What are your suggestions on how to experience optimal aging being an African American woman aged 50 and older? 7. What are some recommendations for specific interventions to promote optimal aging in African American women ages 50 and older? 8. Explain how being an African American woman plays a role in the suggestions and recommendations for specific interventions to promote optimal aging in African American women ages 50 and older. 9. Is there anything else that you would like to share about this topic?  ...

... Impact of Simulation and Settings Upon Student Attitudes Towards Older Adults Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Rebecca A. Smith, OTR/L Copyright April 20, 2023 By: Rebecca A. Smith, OTR/L All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Elizabeth S. Moore, PhD Committee Member ______________________________ Ann Stauche, MSN, RN, CHSE Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ SIMULATION AND STUDENT ATTITUDES Impact of Simulation and Settings Upon Student Attitudes Towards Older Adults Rebecca A. Smith Interprofessional Health and Aging Studies, University of Indianapolis 1 SIMULATION AND STUDENT ATTITUDES 2 Abstract Background: In educational programs, ageist biases and attitudes of healthcare students are prevalent and have been addressed through various methods, including simulation-based learning (SBL). Limited research has explored the impact of simulation on ageist biases and attitudes of occupational therapy assistant (OTA) and physical therapist assistant (PTA) students. Furthermore, there is no research comparing the setting of SBL with a standardized patient (SP) on ageist attitudes of healthcare students. Purpose: The purpose of this study was to examine the impact of a simulation setting with an older adult SP for OTA and PTA students on their attitudes toward older adults. Method: 26 OTA and PTA students were recruited from a small community college. The quasi-experimental counterbalanced design study incorporated a homebased simulation and an acute care-based simulation. The Fraboni Scale of Ageism (FSA) and the Ambivalent Ageism Scale (AAS) instruments were administered before the SBL experiences and after each simulation. Results: The FSA did not indicate any statistically significant differences in student attitudes from the pre-simulation to the last simulation or between the two different settings. The AAS indicated significant differences between pretest and the last simulation and found significant differences when comparing the pretest to the home-based simulation and acute care-based simulation. Conclusion: This study demonstrates the impact of an SBL experience with an SP, specifically impacting benevolent ageist attitudes, which can guide educators in addressing ageism in healthcare students and promoting positive attitudes towards older adults through SBL experiences. Keywords: ageism, healthcare student, older adult, simulation-based learning SIMULATION AND STUDENT ATTITUDES 3 Acknowledgments John Maxwell once said, Youre only as good as the people you have around you. This labor of love has truly been a journey that could not have been seen to the end without those who have been holding me up throughout these years. I would like to extend my sincere gratitude to the many people who have provided support in various ways throughout this process. To Dr. Borrero, Dr. Moore, and Ann Stauche, thank you for your time, patience, flexibility, and unwavering support throughout this time. To Cheryl and Pat, thank you for your heart for students and your flexibility throughout this process. To Christen, Marlene, Allison, Angela, and Misty, thank you for coming alongside me and being my hands in tenuous circumstances. To McHenry County College, thank you for allowing me to use the facilities and supporting the pursuit to improve upon my learning and teaching endeavors. To my sons, Hunter and Rylan, never ever stop being curious about the world around you. Learning never ends! To my parents, Chris and Mindy, from an early age you placed in me a desire to continue to grow. Thank you for instilling a growth mindset and a strong work ethic. Finally, I dedicate this manuscript to my late husband, Rob, who fully embraced my desire to pursue my graduate degrees and supported me in countless ways to help me see this through. You never hesitated or questioned my academic goals. This was another marathon of love for us, and although you couldnt see this to the end, I know you have been by my side throughout. SIMULATION AND STUDENT ATTITUDES 4 Table of Contents Abstract ........................................................................................................................................... 2 Acknowledgments........................................................................................................................... 3 Table of Contents ............................................................................................................................ 4 List of Tables............................................................................................................................... 6 Impact of Simulation and Settings Upon Student Attitudes Towards Older Adults ...................... 7 Problem Statement ...................................................................................................................... 8 Purpose Statement ....................................................................................................................... 8 Research Question ....................................................................................................................... 9 Research Objectives .................................................................................................................... 9 Significance of the Study ............................................................................................................ 9 Literature Review.......................................................................................................................... 10 Determinants of Ageism............................................................................................................ 11 Factors Related to Ageist Attitudes in Healthcare Students ..................................................... 12 Addressing Ageism in Education .............................................................................................. 14 Simulation-Based Learning ....................................................................................................... 17 Standardized Patient .................................................................................................................. 21 Method .......................................................................................................................................... 22 Study Design ............................................................................................................................. 22 Participants ................................................................................................................................ 23 Setting........................................................................................................................................ 23 Data ........................................................................................................................................... 24 Instruments ................................................................................................................................ 24 Procedures ................................................................................................................................. 26 Statistical Analysis .................................................................................................................... 30 Results ........................................................................................................................................... 32 Demographics............................................................................................................................ 32 Overall Student Attitudes .......................................................................................................... 32 Setting of Simulation................................................................................................................. 34 Knowledge of Aging FAQ-2 ..................................................................................................... 35 Discussion ..................................................................................................................................... 35 SIMULATION AND STUDENT ATTITUDES 5 Student Attitudes Toward Older Adults .................................................................................... 36 Setting of the Simulations Impact on Attitudes ....................................................................... 37 Limitations ................................................................................................................................ 38 Implications and Future Research ............................................................................................. 39 Conclusion................................................................................................................................. 41 References ..................................................................................................................................... 43 Figure 1 ......................................................................................................................................... 60 Appendix A ................................................................................................................................... 61 Appendix B ................................................................................................................................... 62 Appendix C ................................................................................................................................... 64 Appendix D ................................................................................................................................... 65 Appendix E ................................................................................................................................... 67 Appendix F.................................................................................................................................... 68 Appendix G ................................................................................................................................... 72 SIMULATION AND STUDENT ATTITUDES 6 List of Tables Table 1 .......................................................................................................................................... 56 Table 2 .......................................................................................................................................... 58 Table 3 .......................................................................................................................................... 59 SIMULATION AND STUDENT ATTITUDES 7 Impact of Simulation and Settings Upon Student Attitudes Towards Older Adults The overall population of the United States is aging rapidly. The number of individuals 65 years and older has experienced a 36% population increase from 2009 to 2019 (Administration on Aging [AoA], 2021). In addition, it is expected there will be 80.8 million older adults in the United States by 2040, doubling the number of older adults as of 2019 (AoA, 2021). The significant demographic shift of the older adult population requires a responsive healthcare system able to provide the appropriate medical care for this group (Fulmer et al., 2021). Ageism has far-reaching implications regarding the healthcare of older adults worldwide, frequently leading to communication errors and detrimental health outcomes including overtreatment and under-treatment (Ben-Harush et al., 2017; Chang et al., 2020; Heyman et al., 2020; Ouchida & Lachs, 2015). In the United States alone, age discrimination, negative age stereotypes, and negative perceptions of aging contribute to an estimated $63 billion in healthcare expenditure every year (Levy et al., 2020). In addition, ageist beliefs and attitudes are noted across various healthcare student populations including students within medicine (BenHarush et al, 2017; Lucchetti et al., 2017), nursing (Ben-Harush et al. 2017; Meri et al., 2019; Rababa et al., 2020a), physical therapy (Blackwood & Sweet, 2016), speech and language (Heape et al., 2020) and occupational therapy (Friedman & VanPuymbrouck, 2021) fields. Various methods have been employed in the healthcare educational setting to address student beliefs, attitudes, and stereotypes of older adults. These methods include workshops, lectures, service-learning experiences, aging simulation experiences, gamification, community interaction, and simulation-based learning (Ross et al., 2018). A systematic review of the literature indicates educational methods that combine both a formal knowledge component with SIMULATION AND STUDENT ATTITUDES 8 an experiential aspect were most effective in changing healthcare students attitudes toward older adults (Chonody, 2015). Simulation-based learning (SBL), which provides a hands-on experience whereby students can apply their clinical judgment and problem-solving skills, has been utilized successfully throughout medical and nursing education (Herge et al., 2013; Rutherford-Hemming et al., 2019). Problem Statement Due to the significant expected population shift, healthcare must be responsive to the growing need of this demographic, including examining the impact of ageist attitudes on healthcare provision. Future healthcare students must be adequately prepared to work with older adults, including being advocates for this population to provide appropriate and adequate healthcare services. As such, educational programs must include effective methods to challenge the ageist beliefs and attitudes of the healthcare student. SBL has been identified as one effective method for students to garner clinical experience (Braude et al., 2015; Mehdi et al., 2014; Williams & Song, 2016), increase confidence (Alanazi et al. 2017), encourage interprofessional teamwork (Bethea et al., 2019), and improve communication with older adults (Skinner, 2017). Although the literature heavily explores these areas, there is a lack of literature on the efficacy of SBL relating to student attitudes and beliefs regarding older adults. In addition, research around simulations that have involved older adults and scenarios has focused mainly on frailty, end-oflife planning, dementia, incontinence, and acute illness (Mehdi et al., 2014), which may reinforce negative student attitudes and beliefs. Purpose Statement The purpose of this study was to examine the impact of a simulation setting on occupational therapy assistant (OTA) and physical therapist assistant (PTA) students attitudes SIMULATION AND STUDENT ATTITUDES 9 toward older adults. More specifically, it explored differences in student attitudes between working with a standardized patient within an acute care SBL setting and a standardized patient in a home-based SBL setting. Research Question To address the study purpose, the following research question was answered: What is the difference in OTA and PTA student attitudes towards older adults when participating in an acute care simulated setting as compared to a home-based simulated setting? Research Objectives The following objectives were met to answer the study research question. 1. To determine if simulation-based learning experiences with an older adult standardized patient impact OTA and PTA student attitudes towards the older adult population, measured by the Ambivalent Ageism Scale and the Fraboni Scale of Ageism. 2. To explore the differences in attitudes of OTA and PTA students when participating in an acute care simulation as compared to a home-based simulation as measured by the Ambivalent Ageism Scale and the Fraboni Scale of Ageism. Significance of the Study Ageist attitudes, stereotypes, and biases are prevalent in healthcare students (Blackwood & Sweet, 2016; Friedman & VanPuymbrouck, 2021; Heape et al., 2020; Lucchetti et al., 2017; Rababa et al., 2020b). Healthcare educators have a responsibility to address these attitudes throughout the curriculum to facilitate healthy views of the older adult as students prepare for clinical practice. This study explored the gaps in the literature regarding the efficacy of SBL in addressing OTA and PTA student attitudes toward the older adult and the impact of the SBL setting in reinforcing or challenging student attitudes. Results from this study can inform SIMULATION AND STUDENT ATTITUDES 10 healthcare educators in designing SBL experiences that reduce ageist attitudes and beliefs of students in preparation for working with older adults. Literature Review Older adults experience a lower quality of healthcare and provision of services from the healthcare systems in the United States as compared to younger Americans, resulting in an increased risk for over-treatment, under-treatment, and miscommunication (Ouchida & Lachs, 2015). Although there are several root causes, the lack of an adequately prepared healthcare workforce is a significant contributor to this systemic issue (Ouchida & Lachs, 2015; Rowe et al., 2016). Specifically, a shortage of healthcare workers trained in geriatrics is impacting care for an increasing population of older adults (Ouchida & Lachs, 2015; Rowe et al., 2016). In addition to an ill-prepared workforce, research has established the significant impact of ageism and age discrimination among healthcare workers, contributing to healthcare disparities for older adults and resulting in poorer health outcomes compared to younger counterparts (Chang et al., 2020; Ouchida & Lachs, 2015). Ageism is a term that describes the attitudes and behaviors toward others or oneself that are influenced by stereotypes, prejudices, and discrimination based on age (World Health Organization [WHO], 2021). Ageism can take on many forms. It can be implicit or explicit, it can be hostile or benevolent, and it can be self-imposed or systemic (WHO, 2021). In a systematic review of 422 studies globally, it was revealed that ageism impacted the health outcomes of older adults in 95.5% of the studies reviewed (Chang et al., 2020). Outcomes most commonly impacted by ageism included: exclusion from health research, devaluing of an older adult, denied access to healthcare and treatments, reduced longevity, poor quality of life, poor social relationships, and increased physical and mental illness (Chang et al., 2020). Older adults SIMULATION AND STUDENT ATTITUDES 11 are frequently excluded from research trials, although many of the trials may impact older adults more often than younger participants (Chang et al., 2020). Withholding treatments from patients due to age or dismissing physical or cognitive changes as expected as a person ages can result in under-treatment or misdiagnosis of the older adult (Chang et al., 2020; Ouchida & Lachs, 2015). Contrary to undertreatment, older adults are at risk for over-treatment, which can include recommendations of specific tests and scans only based on the patients age or recommending procedures or surgeries without considering the comorbidities or contexts surrounding the patient (Ouchida & Lachs, 2016). Clear communication regarding older adults goals and preferences is critical for making sound medical decisions, yet healthcare providers have been shown to be less patient, less responsive, and more patronizing with older adults as compared to younger patients (Ouchida & Lachs, 2016). Although researchers recognize the impact of the current disparity across healthcare providers and systems, it is crucial to consider how ageism and age discrimination have roots in healthcare education and training. Healthcare students, specifically students in medicine, occupational therapy, physical therapy, nursing, physician assistant, and pharmacy, exhibit implicit or explicit negative attitudes and biases toward older adults (Friedman & VanPuymbrouck, 2021; Gallo, 2019; Jester et al., 2020). Determinants of Ageism Around the age of four, children begin to assimilate societal and cultural cues toward age stereotypes, which continue to be reinforced over time (WHO, 2021). Recent systematic reviews have sought out the determinants associated with ageism, identifying factors relating to ageist attitudes across adult participants globally. Factors that attributed to higher levels of ageism were anxiety towards aging, fear of death, younger age, and having negative exposure to older adults SIMULATION AND STUDENT ATTITUDES 12 (Marques et al., 2020). In addition, being male and less educated also correlated with higher levels of ageism (Officer et al., 2020). On the contrary, factors associated with lower levels of ageism included individuals with specific personality types such as conscientiousness, agreeableness, and extraversion, quality of contact with older adults, including relatives, and positive experiences with older adults (Marques et al., 2020). Lastly, cultural belief systems play a role in ageism and ageist beliefs. More recently, the literature indicates that eastern cultures tend to have more negative attitudes toward aging as compared to western cultures (North & Fiske, 2015; Officer et al., 2020). Increased population aging rate can result in conflicts over resource management and cultures that view older adults as unique individuals instead of a collective group can account for cultural beliefs towards aging (North & Fiske, 2015). As a result, although cultures may highly respect older adults, ageist beliefs can still permeate throughout a culture. Factors Related to Ageist Attitudes in Healthcare Students Several demographic factors have also been researched to establish correlations with ageist attitudes and biases, specifically among healthcare students. As a person ages, it is hypothesized that they will become more accepting of the aging process; however, the relationship between students age to their attitudes towards ageism is inconclusive (Cooney et al., 2021). In some studies, student age has been shown to positively relate to improved attitudes toward older adults as older students tend to have more positive attitudes as compared to younger students (Cooney et al., 2021; De Biasio et al., 2016; Gallo, 2019; Jackson et al., 2017). Yet, additional research indicates no significant difference between attitudes and student age (Fernandez et al., 2018). The relationship between the gender of a student and attitudes toward aging is also inconclusive, as some research demonstrated more negative attitudes among male SIMULATION AND STUDENT ATTITUDES 13 students as compared to females (Allu-Sierra et al., 2023; De Biasio et al., 2016; Jackson et al., 2017; Smith et al., 2017) and others did not demonstrate a significant difference (Jester et al., 2020; Rababa et al., 2020a; Urgulu et al., 2019). Several interpersonal factors relate to student attitudes toward older adults. Prior experiences and the quality of close relationships with older adults positively correlate with more favorable attitudes toward aging in healthcare students (Allu-Sierra et al., 2023; Blackwood & Sweet, 2017; Cooney et al., 2021; Jackson et al., 2017; Jester et al., 2020; Smith et al., 2017). The quality of experiences and interactions with older adults is more impactful on attitudes, as compared to the number of experiences (Allu-Sierra et al., 2023; Cooney et al., 2021; Jackson et al., 2017). In addition, the context in which these interactions take place is important. Students who have lived with older adults or had more positive personal or clinical experiences with older adults tend to have less ageist attitudes as compared to those who had more negative experiences (Allu-Sierra et al., 2023; Blackwood & Sweet, 2017; Cooney et al., 2021; Smith et al., 2017). These positive experiences are expected to provide students with opportunities to disrupt their biases and stereotypes towards aging, resulting in improved attitudes (Cooney et al., 2021). Lastly, a persons self-directed perceptions and knowledge of the aging process can shape a students attitude toward aging. That is, healthcare students who view their own aging process with great acceptance tend to have diminished ageist attitudes as compared to those who are fearful or uncertain about aging (Cooney et al., 2021; Jackson et al., 2017). This positive view of the students own life and aging course influences how they view older adults and their aging process. Additionally, a students knowledge of aging has been positively correlated with improved attitudes toward older adults (Cooney et al., 2021; Rababa et al., 2020a; Rababa et al., SIMULATION AND STUDENT ATTITUDES 14 2020b), supporting the integration of coursework in health sciences that address knowledge of the aging process to affect student attitudes (McCloskey et al., 2020). In the United States, there are approximately 7,500 board-certified geriatricians and less than 1% of registered nurses who have geriatric certification, despite national efforts to increase this number to support the rapidly growing older adult population (Rowe et al., 2016). Although much of this is due to financial aspects such as lower reimbursement for Medicare recipients, research has noted that stereotypes and biases also significantly influence current healthcare professionals interest in working with older adults (Ouchida & Lachs, 2015; Rowe et al., 2016). The influence of attitudes and biases toward interest in working with the older adult population is also evident in healthcare student populations. Research demonstrates a strong relationship between students positive attitudes and increased knowledge of aging to an increased desire to work with older adults (Even-Zohar & Werner, 2020; Jackson et al., 2017; Lee et al., 2017). Factors contributing to this relationship include experiences with older adults and a high sense of self-confidence in caring for older adults (Lee et al., 2017). The literature mostly supports the idea that knowledge of aging increases the desire to work with the older adult population (EvenZohar & Werner, 2020; Horowitz et al., 2014, Obhi & Woodhead, 2016). Addressing Ageism in Education To address the shortage of providers who currently treat the older adult population, educational programs have recognized the need to address ageism in students. Various means and methods to address ageism have included traditional didactic courses, service-learning experiences, workshops, clinical experiences, aging empathy suits, gamification, empathy skills training, reflective journaling, and simulation (Burnes et al., 2019; Chonody, 2015; Gallo, 2019). SIMULATION AND STUDENT ATTITUDES 15 Addressing students knowledge of aging is one way to address ageism in students (Even-Zohar & Werner, 2020; Jackson et al., 2017; Lee et al., 2017). Pedagogical methods to improve or alter knowledge typically include traditional instructional formats such as workshops and courses specifically focused on the unique needs of older adults through education on normal aging, conditions, and addressing stereotypes (Burnes et al., 2019; Chonody, 2015). Although instructional classroom interventions can improve student attitudes toward aging, research has demonstrated increased effectiveness when instructional-based pedagogy is coupled with an experiential aspect (Burnes et al., 2019; Chonody, 2015). More specifically, curricula in which experiences involve empathy-building activities have shown more significant results in changing student attitudes (DeBiasio et al., 2015; Samra et al., 2013). Examples of these types of experiences that develop empathy in students are encounters with older adults through mentorships, interviews, clinical rotations, or simulated aging experiences (Samra et al., 2013). Although experiences with older adults mostly have an overall positive effect on students attitudes toward older adults, the literature cautions instructors to consider the importance of environmental and personal contexts surrounding the experiences with older adults. The importance of context has been demonstrated through a few studies, which have shown student attitudes across several different healthcare fields worsen over the course of their education (DeBiasio et al., 2015; Jester et al., 2020) or after a two-week medical internship in geriatric settings (Kusumastuti et al., 2017). To be noted, students across these studies were exposed to experiences with older adults who required acute medical needs. On the contrary, students exposed to positive experiences and community-dwelling older adults demonstrated decreased ageist beliefs (Cadieux et al., 2019; McCloskey et al., 2020; Meric et al., 2019; Ross et al., 2018). These studies highlight the importance of considering the context surrounding the SIMULATION AND STUDENT ATTITUDES 16 encounters students have with older adults as students who participate in experiences with community-dwelling older adults made significant positive changes in student attitudes as compared to students who only had contact with frail older adults (Ross et al., 2018). Not only do well-designed curricular aspects improve attitudes toward aging, but healthcare students have also noted how views on age from faculty, clinical instructors, and other healthcare professionals have negatively or positively influenced their own perceptions of age through the overt and subtle language used by these individuals during their coursework, clinical placements, and work experiences (Blackwood & Sweet, 2017; Dahlke et al., 2020). One study indicated that 47% of medical and nursing students have witnessed ageism from other healthcare providers to older adults while on clinical rotations (Dobrowolska et al., 2019). Theoretical Foundations in Education As educators seek to address student attitudes through curricular and pedagogical means, there are theoretical approaches that may assist to guide curricular development related to changing and influencing student attitudes. Transformative learning theory is described as transforming prior information, mindsets, and assumptions to new information and perspectives; therefore, shifting an individuals prior assumptions (Mezirow, 2007). This approach focuses on the process of challenging and changing fixed belief systems, established perspectives, stereotypes, and biases through intentional learning experiences and reflection (Lucchetti et al., 2017; Van Schalkwyk, et al. 2019). Intentional learning experiences including service-learning, mentorship, simulations with debriefing, or various forms of self-reflection are all successful ways to integrate transformative learning into various healthcare educational programs, resulting in students embracing broader worldviews, influencing attitudes, new interpretations, and a heightened awareness of others (Van Schalkwyk et al., 2019). SIMULATION AND STUDENT ATTITUDES 17 The constructivist framework is an active learning method that supports the need for an experiential component that can effectively influence student attitudes toward ageism (Burnes et al., 2019; Chonody, 2015). The constructivist framework focuses on how students construct knowledge, based on problem-solving, through realistic and complex situations (Niederriter et al., 2020). This framework provides hands-on, immersive experiences in which students develop meaning and understanding, within a realistic context (Niederriter et al., 2020). Lastly, the influence of learning from peers and instructors must also be considered in educational and clinical settings. Social learning theory describes how a learners behaviors can be affected or changed through the observation of others or interaction (Bandura, 1971). Classmates and instructors can influence the behaviors or attitudes of healthcare students. The literature has demonstrated the impact of social learning theory as students have formulated new positive or negative attitudinal behaviors via observation of their instructors and clinical supervisors (Dahlke et al., 2020; Dobrowolska et al., 2019). Thus, educators and clinical instructors must be mindful of their own implicit and explicit biases regarding their own attitudes towards aging as demonstrated to students. Simulation-Based Learning Simulation-based learning (SBL) is one form of experiential learning, which also incorporates transformative learning theory, the constructivist framework, and social learning theory. SBL is defined as an educational strategy in which a particular set of conditions are created or replicated to resemble authentic situations that are possible in real life (INACSL Standards Committee, 2016, p. S44). SBL can provide the means to link the cognitive domain of learning, such as theories and knowledge, to psychomotor domains in practice, all within the context of critical thinking skills (Eide et al., 2019; Koukourikos et al., 2021). SBL can take SIMULATION AND STUDENT ATTITUDES 18 place through various means, such as a written case study, video of a patient, role-playing, standardized patient, manikin, part-task trainer, or virtual reality (Bennett et al., 2017; Grant et al., 2021; Koukourikos et al., 2021). SBL also provides a safe environment to practice various competencies without harm to a real patient (Koukourikos et al., 2021; Mehdi et al., 2014). There are several overarching benefits to integrating SBL into healthcare education programs. Not only is simulation well-received by healthcare students (Grant et al., 2021; Niederriter et al., 2019; Walls et al, 2019), but simulation has been shown to effectively improve clinical knowledge, critical thinking, and skill refinement (Alanazi et al., 2017; Davis & Nye, 2017; Eide et al., 2020). SBL can be utilized to build and remediate specific clinical skills or competencies in isolation, such as catheter placement, colostomy care, transfer training, or assessing vitals. Beyond basic skill development and refinement, SBL can introduce students to complex scenarios which are developed to build students' critical thinking skills (Kourkourkios et al., 2021). Additionally, positive professional identity (Bethea et al., 2019; Grant et al., 2021) and overall student confidence (Imms et al., 2019; Kourkourikos et al., 2021; Pritchard et al., 2016) are strengthened through simulation experiences. Student confidence in managing specific scenarios they may encounter as a practitioner is significantly improved (Mehdi et al., 2014). In one study, students expressed a realization of the level of their knowledge and expressed a sense of improved confidence in applying their content knowledge through SBL experiences (Skinner, 2017). Simulation also effectively provides significant opportunities for students to improve communication with patients and teams (Grant et al., 2021; Imms et al., 2019; Kourkouikos et al., 2021; Negri et al., 2017). SBL experiences with role-playing or standardized patients are SIMULATION AND STUDENT ATTITUDES 19 highly effective to develop communication skills in healthcare students, especially in navigating conflicts, discussing ethical concerns, and communicating sensitive or difficult news to a client or caregiver (Negri et al., 2017). Lastly, simulation is an effective means to strengthen and build interprofessional team skills across medical professions (Bethea et al., 2019; Koukourikos et al., 2021). SBL is used to facilitate the process of interprofessional collaboration, understand the various team members roles, and encourage client-centered care (Grant et al., 2021). Increased opportunities for interprofessional education collaboration are a focus of both occupational therapy and physical therapy accreditation guidelines as of recent and can provide an avenue for interprofessional collaboration in the educational setting (Bethea et al., 2019). Simulated-Based Learning in Geriatrics SBL has been used specifically within the context of geriatric training for healthcare students. Many of the same benefits derived from general SBL experiences are also captured within geriatric-based simulations, including increased self-confidence to care for the older adult (Braude et al., 2015; Mehdi et al., 2014), improved knowledge and perceptions of geriatric healthcare (Fisher and Walker, 2013), and improved knowledge of chronic health conditions for the older adult (Torkshavand et al., 2020). Specific scenarios used in SBL for the older adult have included continence care, elder abuse, dementia care, end-of-life issues, fall management, acute illness, delirium, and interprofessional management (Braude et al., 2015; Fisher & Walker, 2013; Mehdi et al., 2014). Although these topics are appropriate for the acute care settings many healthcare students will practice in, there is limited literature regarding SBL experiences in community-based practice settings for the older adult. Only one study was located, a smaller mixed-methods study of 21 SIMULATION AND STUDENT ATTITUDES 20 students, who completed a simulation in a home-based scenario (Skinner, 2017). Results indicated improved perceptions of older adults through qualitative means but no significant difference regarding students knowledge of aging (Skinner, 2017). Although SBL experiences incorporating geriatric care have been used as an effective experiential component in healthcare educational programs, there are inherent and unique challenges. SBL experiences must have a level of realism or fidelity which includes an accurate portrayal of the client, with the student being fully immersed in the situation (Cowperthwait, 2020; Siew et al, 2021). This requires designing an SBL in which the experience closely resembles real life, which can be challenging to achieve when attempting to create scenarios that are meant to present the clients holistically. Manikins and partial task simulators can be effective for training a technical clinical skill, yet do not provide the contextual, emotional, cognitive, or communicative aspects of client care with an older adult (Koukourikos et al., 2021). In role-play or standardized participant simulation-based experiences, many studies included students, faculty, or live actors who are portraying the role of the client (Bethea et al., 2019; Grant et al., 2021; Pritchard et al., 2016). Utilizing younger students, faculty, or live actors who are attempting to portray a client in an SBL experience may also provide an unrealistic representation of an older adult. Yet, incorporating older adults into SBL can present some additional factors to consider such as actual physical, cognitive, and sensory considerations an older adult may present with, such as decreased activity tolerance due to cardiovascular changes and hearing or vision changes (Smith et al., 2021). Therefore, the development of SBL may require additional collaboration and support for the participants which may be considered an additional barrier (Smith et al., 2021). SIMULATION AND STUDENT ATTITUDES 21 Standardized Patient Effective SBL experiences require fidelity and realism, which can be difficult to attain as a simulation is an attempt to replicate a real scenario (Cowperthwait, 2020; Koukourikos et al., 2021). Integration of a standardized patient (SP) into a simulation is one way to increase the fidelity of an SBL experience and is one of the most common methods of providing SBL, especially within areas of improving student communication, confidence, and physical examination skills (Alanazi et al., 2017; Herge et al., 2013; Negri et al., 2017). The terms standardized patient, simulated patient, and simulated participant have been used in the literature interchangeably; however, the International Nursing Association of Clinical and Simulation Learning (INACSL) Standards Committee (2016) uses the term standardized patient (SP) as the universal term and was used throughout this study as it encapsulates the broad range in which an SP works and allows for individuality for patient-based care (Nestel et al., 2018). An SP is a person who is trained to consistently portray a patient or other individual in a scripted scenario for the purposes of instruction, practice, or evaluation (INACSL Standards Committee, 2016, S45). Although any person can act as the patient, best practice indicates the integration of an SP who closely matches the patients physical characteristics to maintain simulation fidelity, including age (Cowperthwait, 2020; Lewis et al., 2017). This provides students with an experience with an older adult, bringing perspective regarding the aging experience and navigating the healthcare system (Davis & Nye, 2017; Thompson et al., 2017). Literature supports higher student satisfaction when completing an SBL experience with an SP as compared to a manikin most likely due to the impact of realism when working with a live person (Lucktar-Flude et al., 2012; Pritchard et al., 2016). Overall, the use of an SP during SBL experiences has demonstrated positive outcomes in the development of technical, non- SIMULATION AND STUDENT ATTITUDES 22 technical, and cognitive skills of students (Williams & Song, 2016). Substituting up to 25% of clinical experiences with simulation with an SP in the physical therapy curriculum has shown a difference in student preparation as compared to the typical clinical placement (Pritchard et al., 2016), demonstrating the strength of SP-based simulations on building capacity for healthcare students. Specifically, within geriatric-based simulations, a study by Siew et al. (2020) reviewed 15 articles and noted significant improvements in students knowledge of aging, clinical skills, technical and non-technical skills, confidence, and interprofessional teamwork. There are limited studies that include an SP and address student attitudes and perceptions toward older adults as one of their outcomes. Skinner (2017) found improved student perceptions toward older adults in a qualitative study. The use of an SP has also been noted to improve empathy among nursing students (Arrogante et al., 2022). However, no studies have quantitatively addressed students ageist attitudes toward older adults as a primary outcome of an SBL experience that included an SP. There is a need for research in this area, addressing the confluence of experiential and transformational learning through SBL experiences and addressing healthcare students attitudes toward the older adult, including the impact of the setting context on student attitudes. Method Study Design This quasi-experimental study incorporated a counterbalanced design to determine if the setting of a simulation with a simulated older adult participant impacted the attitudes of occupational therapy assistant (OTA) and physical therapist assistant (PTA) students toward older adults. The counterbalanced study design was utilized to decrease the threat of participants applying prior learning (Cottrell & McKenzie, 2011) as half the participants participated in an SIMULATION AND STUDENT ATTITUDES 23 acute care simulated setting first while the other half started in a home-based simulated setting (see Figure 1). Participants A non-probability convenience sample of students in the OTA and PTA programs at McHenry County College was recruited for this study. One cohort of students participated in the study during the summer of 2022 and the second cohort of students participated in the fall of 2022. Participants in the study met the following inclusionary criteria: (a) current student in the McHenry County College OTA or PTA program, (b) enrolled in the didactic portion of their studies, and (c) not currently in the final semester of clinical or fieldwork. An a priori sample size estimate was calculated using G*Power, version 3.1 (Faul et al., 2007). As the data were not normally distributed, sample size estimates were calculated based on the Friedmans ANOVA to determine differences within the assessment times. The following parameters were selected for the calculation based on clinical judgment and Cohens (1992) recommendations: significance level alpha of .05, power of 0.80, a moderate effect size of f = 0.25, correlation among representative measures of 0.5, and a non-sphericity correction of 1. Based on the calculation, a minimum sample size of 28 was needed to adequately power the study. Setting The study took place at McHenry County College (MCC), a small community college located in northern Illinois. The health care division at MCC is equipped with a simulated hospital and simulated apartment. The simulated hospital setting consists of three patient suites, two control rooms, and one debriefing room. Observation of the simulations in the hospital can be completed through either the control rooms or the installed video system. The simulated SIMULATION AND STUDENT ATTITUDES 24 apartment setting contains a bedroom, bathroom, living room, and kitchen, which can be observed from an installed video system. Data Data were collected using Qualtrics, a web-based survey software program. Demographic data collected in this study included age (years), sex (male, female, other), and race/ethnicity (Asian or Pacific Islander, Black or African American, Hispanic or Latinx, Native American or Alaskan Native, White or Caucasian, Multiracial or Biracial, or Other). In addition, the following student background information was collected: discipline (OTA, PTA), semester enrolled (1, 2, 3), types of experience with older adults (family, paid work, volunteer, leisure activities, educational settings, no experience), and quality of experiences with older adults (very good, good, acceptable, poor, very poor, no experience). For the purpose of the study, an older adult was defined as a person who is 65 years or older, to coincide with the definition of older adults on the instrumentation utilized in this study (Fraboni et al., 1990). Attitudes toward older adults were operationalized using scores from the Fraboni Ageism Scale (FAS) and the Ambivalent Ageism Scale (AAS). Palmores Facts on Aging Quiz 2 (FAQ-2) was used before the intervention to assess the participants knowledge of aging. Instruments Ambivalent Ageism Scale The AAS captures the benevolent and hostile attitudes toward older adults (Cary et al., 2017). The inclusion of benevolent attitudes makes the AAS unique from other assessments (Cary et al., 2017; Kang, 2022). There are 13 statements in which participants note their level of agreement, utilizing a seven-point Likert scale with scores ranging from 13-91. An overall SIMULATION AND STUDENT ATTITUDES 25 summed score is obtained, in which lower scores indicate more positive attitudes toward older adults. Test-retest reliability performed at two weeks resulted in an r = .80 and an internal consistency of = .91 (Cary et al., 2017). There is no information on the responsiveness of this instrument at the time of this study. Permission was obtained from Dr. Alison Chasteen to utilize this instrument for the study (See Appendix C). A copy of the instrument is located in Appendix D. Fraboni Scale of Ageism The FSA measures the affective component of ageism and consists of 29 statements in which a four-point Likert scale is utilized indicating responses from strongly disagree to strongly agree to each statement (Fraboni et al., 1990). A summed score (29-116) is obtained with higher levels of ageism indicated by higher overall scores. The instrument measures antagonistic and discriminatory attitudes and beliefs (Rupp et al., 2005). Statements are aligned to avoidance, antilocution, and discrimination levels of prejudice as defined by Allport (1958, as cited in Fraboni et al. 1990). Whole scale internal consistency reliability is = .86 (Fraboni et al., 1990). Factor analysis performed on the FSA revealed three factors, stereotypes, separation, and affective attitudes (Rupp et al., 2005). The stereotypes factor is also defined as antilocution, a type of prejudice in which someone verbalizes negative comments about a group but not directly to the group or individual it is intended for, whereas the separation factor refers to the active avoidance of the intended person or group (Rupp et al., 2005). Lastly, the affective factor indicates the emotional responses and attitudes toward the group (Rupp et al., 2005). Internal consistency among the three factors of stereotypes, separation, and affective attitudes are = .79, .76, and .70 respectively (Rupp et al., 2005). Intercorrelations between the FSA and the subscales of the Aging Semantic Scale are = .77, .79, .78, and .79, demonstrating adequate SIMULATION AND STUDENT ATTITUDES 26 convergent validity (Rupp et al., 2005). There is no literature regarding test-retest reliability or responsiveness to change at the time of this study. The FSA also demonstrates convergent validity to the Attitudes Towards Old People Scale, = .86 (Rupp et al., 2005). Permission has been obtained from Dr. Maryann Fraboni and Dr. Robert Saltstone to utilize this instrument for the study (See Appendix A). A copy of the instrument is located in Appendix B. Palmore Facts on Aging Quiz-2 The FAQ was initially developed as a true/false questionnaire which was revised (FAQ2) and then later reformatted into multiple-choice questions to increase the accuracy of the instrument and to reduce the likelihood of participants making educated guesses between true and false (Harris & Changas, 2005). The FAQ-2 consists of 25 multiple-choice questions which are scored by summing the total number of correct responses, with higher scores indicating increased knowledge (Harris & Changas, 2005). Internal consistency of the revised FAQ-2 is = .36 (Harris & Changas, 2005). At the time of this study, there is no information on test-retest reliability or responsiveness to change. Permission was obtained from Dr. Paul Changas to use this instrument for the study (See Appendix E). A copy of the instrument is located in Appendix F. Procedures Recruitment Institutional Review Board approval was obtained from the University of Indianapolis, along with a letter of cooperation from McHenry County College prior to recruitment. Since participants were students at the institution where the primary researcher (R. S.) is employed, and the OTA students have had courses and would have future courses with the primary researcher, the risk of a power differential was considered. Due to the risk of the perception of SIMULATION AND STUDENT ATTITUDES 27 coercion or undue influence from the power differential, participants were considered a vulnerable population (Manti & Licari, 2018; Office for Human Research Protections, n.d.). To reduce the risk, recruitment took place at the end of the class time or during a break, which allowed students to leave the classroom if not interested, and on a day the author did not teach a course with the potential participants to further reduce the association between the primary researcher and instructor of the OTA students. A faculty member of the PTA program was the primary recruiter for the OTA students and the author was the primary recruiter for the PTA students. Potential participants were notified about the study through signage in the students respective classrooms and the learning management system approximately one week before the meeting took place. This announcement invited them to stay after class to learn about the study. Two recruitment meetings were scheduled at a time when students were on campus. One meeting was with the OTA students and one with the PTA students, along with an in-person follow-up a few days later. These meetings took place immediately after their class on that day and in their respective classrooms. The recruiters utilized a script to reference so that all students were provided with the same information including the purpose of study, location, and time requirements. In addition, the script specifically stated that participation or lack of participation would not impact grades or result in preferential selection for fieldwork or clinical placements. Informed Consent At the time of the recruitment meeting, participants were provided an initial written informed consent document for their review. The document included an explanation of the study, indicating voluntary and confidential participation, duration and time commitment, and risks and benefits of participation. The document explicitly stated that study participation would not SIMULATION AND STUDENT ATTITUDES 28 impact course grades or give preference for clinical or fieldwork placements, participation would be completely voluntary, and participants have the right to withdraw from the study at any time. Students were given one week to decide whether or not to participate in the study and submit their signed informed consent to their primary recruiter if they agreed to participate. The study began approximately two weeks after informed consent was obtained from the participants. Throughout the study, participants continued to provide their informed consent at each data collection point. Randomization Once participants provided consent, they were randomly placed into one of two groups, Group A (acute care simulation first then the home-based simulation) and Group B (home-based simulation followed by the acute care simulation. The creation of groups A and B was to adhere to the counterbalance design of the study and demographic comparisons. Simple randomization was performed by assigning each participant a number. These numbers were inserted into www.randomlists.com, a computer-based random team generator, to create two separate groups. Data Collection Each participant created their own unique identifier which was used throughout the study in an attempt to maintain confidentiality. In a pure counterbalance design, assessment is only taken after each intervention (Cottrell & McKenzie, 2011). However, since one research question asks if the simulations with an older adult (intervention) altered overall ageist attitudes, a pretest was conducted. Another research question asks if there is a difference in attitudes based on the simulation setting. Therefore, posttests after each simulation were obtained. To decrease the threat to internal validity through retesting the three assessment points for the AAS and FSA were spaced approximately four weeks apart. SIMULATION AND STUDENT ATTITUDES 29 Four weeks before the first simulation, participants completed the first data collection point, providing demographics, background, the FAQ-2, the AAS, and the FSA via a Qualtrics survey. The second and third data collection points occurred within a half hour of completing the simulation, which included completing the AAS and FSA. Typically, students within the healthcare programs at this community college participate in an immediate verbal debrief with the instructor and standardized patient. Therefore, to decrease the possibility of additional communication after the completion of the simulation scenario, which could impact their perceptions or attitudes, and to best standardize the study, the debriefing session was completed with a PTA or OTA instructor. The debriefing session followed a script of five questions which maintained the focus only on the provision of care and clinical reasoning skills. Intervention There were two simulation interventions for each participant. Each intervention was completed with a standardized patient who was an older adult trained by the primary researcher on how to portray the selected case for the simulation. There were two standardized patients, a retired nurse and a retired occupational therapist, who had a history of working with students in educational and clinical settings and were two years apart in age. Provision of scripts and training before the simulation provided for increased fidelity of the simulations. Approximately four days before each simulation, participants received occupational therapy and physical therapy evaluations with the plan of care and goals (see Appendix G), and additional resources regarding the client's diagnosis. The evaluations provided students with a continuum of goals which allowed students of all skill levels to ensure their ability to utilize interventions that match their developing skill sets, despite if they were in their first, second, or third didactic semester. SIMULATION AND STUDENT ATTITUDES 30 On the day of the simulation, participants entered the simulations and completed a 20- to 30minute treatment session. The acute care simulation portrayed an older adult who had chronic obstructive respiratory disease (COPD) and required moderate assistance and relied on a support system. It took place in a simulated hospital room while utilizing a nasal cannula for oxygen. The homebased simulation was completed in a mock apartment with the other standardized patient. This case consisted of an older adult with COPD who was mainly independent, uses a nasal cannula and condenser for oxygen, and required a home assessment and follow-up treatment session for safety. Data Management Pretest and posttest data were matched by the student-created unique study identifier. Data were downloaded from Qualtrics and entered into a password-protected Microsoft Excel spreadsheet by the primary researcher after the last data collection period. The primary researchers password-protected personal computer was used for data storage. Printouts of the data spreadsheets were stored in a locked cabinet in a locked room and will remain there for three years after the studys completion. At that time, paper documents or printouts will be destroyed through a paper shredding service. Statistical Analysis Descriptive statistics were used to characterize participant demographics and status, including age, sex, race/ethnicity, student discipline of study, semester enrolled in the program, and quality and types of experiences with older adults. In addition, descriptive statistics were used to present outcome data, the FAQ-2, AAS, and FSA scores. Nominal data are reported as frequencies and percentages; medians and interquartile ranges for ordinal and non-normally SIMULATION AND STUDENT ATTITUDES 31 distributed interval and ratio data; means and standard deviations for normally distributed interval and ratio data. Pre-simulation, Simulation 1, and Simulation 2 outcome data were compared using Friedman ANOVA tests since the data were not normally distributed. Assumptions for a Friedman ANOVA include (a) dependent groups (b) repeated measure of dependent variable three or more times (c) ordinal, interval, or ratio data (c) not normal distribution among groups, and (d) no expected interactions between participant and treatment (Kellar & Kelvin, 2013). When a significant difference was found within the three times, post hoc Wilcoxon signed-rank tests with Bonferroni correction were conducted. The AAS and the FSA do not have a published minimal detectable change or a score that indicates clinical relevance; therefore, Cohens d with a value of 0.50 was used to signify a moderate effect for the Friedmans ANOVA and Wilcoxon signed-rank test (Van den Berg, n.d.). Effect sizes were calculated based on the equations provided by Fields (2018) and the effect sizes were interpreted based on the recommendations of Cohen (1992). The relationship between knowledge of aging as measured by the FAQ-2 and the AAS and FSA scores was also explored by using a Spearman Rho correlation test. Assumptions for the Spearman Rho test include (a) ordinal, interval, or ratio data (b) two variables of interest (c) the two variables are independent of each other, and (d) the participants are an independent random sample (Kellar & Kelvin, 2013). A correlation coefficient (r) between .50 to .70 was used to indicate a moderate correlation (Moore et al., 2013). Statistical analysis was performed using IBM SPSS Statistics for Windows, Version 28.0 (IBM Corp., Armonk, NY). The normality of data was determined using Shapiro-Wilk tests, as SIMULATION AND STUDENT ATTITUDES 32 well as visual inspection of histograms and Q-Q plots. All comparisons were two-tailed and a significance level of less than .05 was considered statistically significant. Results Demographics Initially, 30 participants enrolled in the study; however, four did not complete surveys in all three time periods. Therefore, the data for these students were excluded from the analysis, resulting in a final sample size of 26. Due to the randomization of the assignment groups at the start of the study to maintain the counterbalance design, there were 12 (46%) participants in Group A and 14 (54%) participants in Group B. Most of the participants were OTA students (N = 17, 65%) while 9 (35%) were PTA students and the majority were female (N = 23, 88%). The participants median age (interquartile range) was 34.38 (18.00) years and the semester (1st, 2nd, or 3rd semester) the participants were enrolled in was 2.23 (1.00). Detailed demographics and participant status information are displayed in Table 1. Overall Student Attitudes To address the first objective of the study, a Friedman ANOVA test was used to determine if there was a difference in AAS and FSA scores over the three time periods. The results of the comparisons are found in Table 2. The median AAS score (interquartile range) for the pre-simulation was 27.50 (16.00), 28.50 (13.00) after the first simulation, and 25.50 (18.00) after the second simulation. The Friedman ANOVA, X2(2, N = 26) = 15.74, p < .001 indicated there was a statistical difference in attitudinal scores across the three measures at an alpha .05 level. The overall effect size was large (d = 1.01). The pairwise post hoc analyses with the Wilcoxon signed-ranks test and Bonferroni correction at an adjusted alpha significance of .017 were used to analyze the differences between the pairs. The median difference between the pre- SIMULATION AND STUDENT ATTITUDES 33 simulation and the last simulation (Simulation 2) was 2.00 and the Wilcoxon signed-ranks test reported a p = .003 indicating a statistical difference. There was no statistical difference between the other pairs. The median FSA score (interquartile range) for the pre-simulation was 97.00 (11.00), 98.00 (16.00) after the first simulation, and 100.00 (16.00) after the last simulation. Data from the FSA was analyzed using a Friedman ANOVA test as data were not normally distributed. The Friedman ANOVA, X2(2, N = 26) = 3.08, p = .214 indicated that there was no significant statistical difference between scores; however, the effect size is moderate (d = 0.41). The three factors of the FSA, stereotypes, separation, and affective attitudes were also analyzed (see Table 2). The data were not normally distributed; therefore, the Friedman ANOVA test was used. The median stereotype score (interquartile range) for the pre-simulation was 31.50 (5.00), 3.50 (6.00) after the first simulation, and 33.00 (9.00) after the last simulation. The Friedman ANOVA, X2(2, N = 26) = 4.79, p = .091 indicated no significant statistical difference; however, a moderate effect size was noted (d = 0.51). The median separation score (interquartile range) for the pre-simulation was 29.50 (3.00), 30.00 (5.00) after the first simulation, and 29.50 (4.00) after the last simulation. The Friedman ANOVA, X2(2, N = 26) = 0.28, p = .870 indicated no significant statistical difference. The median affective score (interquartile range) for presimulation was 17.00 (3.00), 17.00 (3.00) after the first simulation, and 17.50 (3.00) after the last simulation. The Friedman ANOVA, X2(2, N = 26) = 4.82, p = .090 indicates no statistical significant difference; however, there is a moderate effect (d = 0.51). SIMULATION AND STUDENT ATTITUDES 34 Setting of Simulation To address the second objective of the study, data were reorganized into settings to explore student attitudes based on the setting of the simulation. Differences between the presimulation and the two settings were analyzed. Acute Care Setting The Wilcoxon signed-ranks test was used to determine if there was a difference in scores for the AAS over the two times, pre-simulation and post-acute care simulation as data were not normally distributed. The median AAS score (interquartile range) for the pre-simulation was 27.50 (16.00) and 26.00 (17.00) after the acute care simulation. The Wilcoxon signed-ranks test Z = -2.03, p = .042 indicated there was a statistical difference in attitudinal scores between the pre-simulation AAS scores and post-acute care simulation AAS scores at an alpha .05 level. There is a moderate effect size (d = 0.59). To analyze the difference between the FSA scores, a Wilcoxon signed-ranks test was used as data were not normally distributed. The pre-simulation median FSA scores (interquartile range) were 97.00 (11.00) at pre-simulation and 99.00 (14.00) post-acute care simulation. The Wilcoxon signed-ranks test Z = -0.14, p = .886 indicated no statistical difference at a .05 alpha level. Additionally, the FSA factors of stereotypes, separation, and affective were analyzed between pre-simulation and post-acute care simulations, and no significant statistical differences were found (see Table 3). Home-Based Setting Wilcoxon signed-ranks test was also used to analyze differences between the presimulation and post-home-based simulation setting as data were not normally distributed. The median AAS score (interquartile range) for the pre-simulation was 27.50 (16.00) and 29.00 (16.00) after the home-based simulation. The Wilcoxon signed-ranks test Z = -3.14, p = .002 SIMULATION AND STUDENT ATTITUDES 35 indicated there was a statistical difference in attitudinal scores between the pre-simulation AAS scores and post-acute care simulation AAS scores at an alpha .05 level. There is a large effect size (d = 0.97). The attitudes of students were also measured by the FSA. The median FSA scores for the pre-simulation were 97.00 (11.00) and 99.50 (17.00) for the post-home-based simulation. The Wilcoxon signed-ranks test Z = -1.05, p = .296 indicated no statistical difference at a .05 alpha level. The FSA factors related to stereotypes, separation, and affective were examined before and after the home-based simulations, and no statistically significant differences were detected (see Table 2). Knowledge of Aging FAQ-2 Participant knowledge of aging was assessed by the FAQ-2. Scores of the FAQ-2 were analyzed as a whole group to explore the relationship between knowledge of aging scores and scores on the FSA and AAS. The median FSA score (interquartile range) for the group was 9.50 (3). The bivariate Spearman correlation was r(26) = -.15, p = .465 for the FSA, and r(26) = -.03, p = .885 for the AAS. This indicates the relationships between knowledge of aging and attitudes towards aging among participants in this study were weak and not statically significant. Discussion This studys purpose was to address two objectives: (a) to determine if simulation-based learning experiences with an older adult standardized patient impact OTA and PTA student attitudes towards the older adult population, measured by FSA, and the AAS and (b) to explore the relationship between attitudes of OTA and PTA students when participating in an acute care simulation as compared to a home-based simulation as measured by the FSA, and the AAS. The SIMULATION AND STUDENT ATTITUDES 36 findings from this study were that there was no change in attitudes as measured by the FSA; however, positive changes in overall attitudes were indicated as measured by the AAS. Student Attitudes Toward Older Adults The use of an SP during SBL experiences increases student satisfaction with learning (Lucktar-Flude et al., 2012; Pritchard et al., 2016); improves clinical care (Pritchard et al., 2016; Williams & Song, 2016), and increases empathy (Arrogante et al., 2022). There is a lack of current research on the impact of SBL with an SP on ageist attitudes of students, including a lack of research on SBL with OTA and PTA students. This study explored whether or not there was a significant difference in OTA and PTA student attitudes toward older adults as measured by two instruments, the FSA and the AAS. Although the two instruments are moderately correlated (r = .51-.71) and have good consistency (r = .08) (Kang, 2022), they yielded different results in this study, regarding the significance of an overall change in student attitudes toward older adults after participating in an SBL experience with an SP who is an older adult. Student attitudes towards older adults, as measured by the FSA in this study, were not impacted significantly after participating in a simulation with an older adult as an SP. Ageism is multifaceted and can take on many forms. The FSA was specifically designed to measure the antagonistic or hostile aspects of ageism (Rupp et al., 2005); therefore, the FSA reflects more of the participants negative attitudes toward older adults. While there is no specific score on the FSA to determine the degree of ageist beliefs, higher scores indicate increased levels of ageism. In this study, the three factors of the FSA, stereotypes, separation, and affective attitudes, also did not yield any significant findings between pre-simulation and post-simulation experiences. Although the FSA did not reveal a significant difference in attitudes between pre- and post-simulation experiences, the AAS did show a significant difference in attitudes after SIMULATION AND STUDENT ATTITUDES 37 simulation experiences with an older adult as the SP. In contrast to the FSA, the AAS evaluates both benevolent and hostile ageism attitudes, with a larger focus on benevolent attitudes which includes 9 benevolent and 4 hostile statements (Cary et al., 2016). Although there is no cut-off score to determine if responses are ageist, lower summed scores of the AAS indicate lower ageist attitudes (Cary et al., 2017). This study suggests that the overall simulation experience, which included two simulations with a standardized patient, had a greater effect on improving benevolent ageist attitudes towards older adults than hostile attitudes, as suggested by the significant difference in AAS scores. Experiences and exposure to older adults within an educational curriculum have been shown through multiple studies to increase empathy and general student attitudes toward older adults (Arrogante et al., 2022; DeBiasio et al., 2015; Samra et al., 2013). This study further demonstrates the impact of an SBL experience, specifically suggesting a significant impact in altering benevolent ageist attitudes of OTA and PTA students. Setting of the Simulations Impact on Attitudes The context surrounding a students experience with older adults can impact their attitudes, specifically when a student is working with a community-dwelling older adult as compared to a frail older adult (Ross et al., 2018). There is a paucity of research that compares the impact of different settings on student attitudes. Therefore, the study's second objective was to explore the effect of a specific simulation setting on participants' attitudes. The findings from the FSA did not indicate any significant statistical differences between pre-simulation and the acute care setting or pre-simulation and the home-based setting. Again, there were no significant differences found within the three factors of stereotype, separation, and SIMULATION AND STUDENT ATTITUDES 38 affective. These results suggest that the simulation setting did not influence changes in participants' antagonistic ageist beliefs or hostile attitudes. However, the results of the AAS demonstrated a statistically significant difference in attitudes of OTA and PTA students when comparing pre-simulation scores to post-home-basedsimulation and pre-simulation to post-acute care simulation scores. Although both settings demonstrated statistically significant differences in attitudes, it should be noted there was an improvement in attitudes following the acute-care simulation and a worsening of attitudes after the home-based simulation. There was a moderate effect size between pre-simulation to posthome-based simulation as compared to a small effect size between pre-simulation to post-acute care simulation. There were no significant statistical findings regarding the sequence of the simulations upon the attitudinal scores for both the FSA and AAS. Cooney et al. (2021) noted that a relationship between student age and attitudes toward older adults has been inconclusive; however, several studies have found a relationship between older student age and more positive attitudes (De Biasio et al., 2016; Gallo, 2019; Jackson et al., 2017). Although this study did not uncover any correlations between age and scores on the FSA or AAS, it should be noted that the instruments used in this study were initially validated on a younger group of participants. The participants in the FSA had a mean age of 22.15 and 22.6 (Rupp et al., 2005) and the AAS mean age was 18.91 and 26.9 (Cary et al., 2016). Whereas the mean age of the participants in this study was 34.38 years of age. Limitations Primary limitations for this study included the use of a convenience sample of students within a single college and two educational programs which may not be representative of all OTA and PTA students or educational programs. Additionally, the sample size of the study was SIMULATION AND STUDENT ATTITUDES 39 small, which could limit the statistical power or reproducibility of the findings. Data from the participants may also demonstrate a response shift bias as participants rated themselves lower at the pretest for both the FSA and AAS as compared to the data point after simulation 1. Lastly, while the diversity of the participants was similar to that of the OTA and PTA educational programs from which they were recruited, it may not be representative of the larger population of therapy students. Implications and Future Research The predominant body of research on SBL focuses on older adult scenarios addressing end-of-life issues, fall management, acute illness, dementia, elder abuse, and other situations which portray a frail older adult (Braude et al., 2015; Fisher & Walker, 2013; Mehdi et al., 2014). Furthermore, current research on SBL experiences with an SP as an older adult has primarily focused on clinical and technical skills, the confidence of the student, and interprofessional teamwork (Siew et al., 2020). This study addresses a gap in the literature regarding the effect of SBL with an SP on students attitudes toward older adults. In addition, there is no published research on the experiences of OTA and PTA students with SBL with an SP. This study also attempted to explore these gaps in the literature regarding the setting of simulation on the ageist attitudes of students through the means of SBL with an SP. Ageism is multifactoral and can take on many forms, two forms being hostile or benevolent (WHO, 2021). The FSA is an instrument that measures hostile or antagonistic attitudes and this study did not find a statistically significant difference in attitudes as measured by the FSA. However, the AAS measures benevolent attitudes which this study did find significant differences over time, both improving and worsening attitudes. Benevolent ageism has also been termed as compassionate ageism in the literature and has also been recognized SIMULATION AND STUDENT ATTITUDES 40 more since the recent pandemic (Vervaecke & Meisner, 2021). Benevolent attitudes can be described as patronizing behaviors or overaccommodation and have been explored throughout research with sexism (Cary et al., 2016, Chasteen et al., 2021, Sublett et al., 2021). More recently it has been explored regarding ageism. Benevolent ageism can be towards someone or a group of people and tends to be quite subtle, which is the opposite of direct, hostile ageism (Chasteen et al., 2021). Studies have indicated that benevolent attitudes are generally more accepted across society and gender which can make it difficult to confront (Chasteen et al., 2021, Sublett et al., 2021). Confronting benevolent ageism can be complex as one study noted that strong confrontation regarding benevolent acts increased more negative attitudes toward an older adult (Chasteen et al., 2021). Benevolent ageism can appear in healthcare in a multitude of ways. For therapy providers, this may arise through communication with older adult clients where the provider is using elderspeak, where a clinician is assuming the client requires slow and simplified language (Shaw & Gordon, 2021). Another form of benevolent ageism can also include a healthcare team who is assuming a patient requires more services or medical equipment to remain safe in their home based solely on the patients age and regardless of their competence or motivations (Vervaecke & Meisner, 2021). Clinicians need to recognize how the impact of benevolent ageism in therapy decisions can contribute to learned helplessness (Vervaecke & Meisner, 2021), which conflicts with most therapy goals of increased independence. This study begins to provide needed research to explore how to impact future healthcare providers benevolent attitudes toward aging. Future research is needed to further explore the overall impact of SBL on ageism and attitudes of healthcare students, including the various forms of ageism. The WHO identifies SIMULATION AND STUDENT ATTITUDES 41 educational interventions as one of the three strategies to reduce ageism on a global level (2021). This research can help educators to better understand and analyze how their creation of different types of SBL experiences. In addition, educators may also consider the setting, or context, of SBL experiences on the effectiveness to reduce ageism and promote more positive attitudes among healthcare students. This can ensure that future healthcare professionals are equipped with more positive attitudes toward their future patients who are older adults, leading to improved higher-quality care. It is also imperative to conduct additional research on the impact of SBL experiences with older adult SPs regarding differences in the impact on hostile and benevolent attitudes. This can enable healthcare educators to create targeted interventions that are effective in addressing ageism in healthcare students and promoting positive attitudes toward older adults. Conclusion Ageism is a pervasive issue in healthcare and society, and reducing ageism is crucial for improving the quality of care provided to older adults. Educational programs have utilized various methods to address ageism through didactical and experiential methods leading to positive outcomes and results, demonstrating effectiveness in reducing ageism among healthcare students (Burnes et al., 2019; Chonody, 2015; Gallo, 2019). Research has also indicated the importance of students having positive experiences with older adults in the community and how the context, or setting, can contribute to reducing ageist attitudes in healthcare students (Cadieux et al., 2019; McCloskey et al., 2020; Meric et al., 2019; Ross et al., 2018). The best practice in educational programs is to integrate didactic and experiential components to foster attitude changes among students (DiBiasio et al., 2015; Samra et al., 2013). SBL experiences with an SIMULATION AND STUDENT ATTITUDES 42 older adult as an SP is an effective intervention for students to gain experience before entering the healthcare field. This study found that while there were no significant changes in antagonistic or hostile ageist attitudes as measured by the FSA, there were significant impacts in benevolent ageist attitudes as measured by the AAS, dependent upon the context of the simulation or over the course of the full simulation experience. These findings suggest that SBL experiences with an SP can have an impact on altering benevolent ageist attitudes toward older adults. Addressing ageism in healthcare is not only an ethical imperative but also critical to improving health outcomes and enhancing the well-being of older adults. 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C., Hafler, J., Brewer, T. F., Maley, M. A., Margolis, C., McNamee, L., Meyer, I., Peluso, M. J., Schmutz, A. M., Spak, J. M., & Davies, D. (2019). Transformative learning as pedagogy for the health professions: A scoping review. Medical Education, 53(6), 547558. https://doi.org/10.1111/medu.13804 Vervaecke, D., & Meisner, B.A. (2021). Caremongering and assumptions of need: The spread of compassionate ageism during COVID-19. The Gerontologist, 61(2), 159-165. https://doi.org/10.1093/geront/gnaa131 Walls, D. J., Fletcher, T. S., & Brown, D. P. (2019). Occupational therapy students' perceived value of simulated learning experiences. Journal of Allied Health, 48(1), 21E-25E. Williams, B., & Song, J. J. Y. (2016). Are simulated patients effective in facilitating development of clinical competence for healthcare students? A scoping review. Advances in Simulation, 1(1), 19. https://doi.org/10.1186/s41077-016-0006-1 World Health Organization. (2021). Global report on ageism. https://www.who.int/publications/i/item/9789240016866 SIMULATION AND STUDENT ATTITUDES 56 Table 1 Demographic Characteristics of Participants (N = 26) Characteristic All Participants Group A (n = 12) Group B (n = 14) N (%) N (%) N (%) Female 23 (88.5) 12 (100) 11 (78.6) Male 3 (11.5) 0 3 (21.4) 21 (80.8) 8 (66.7) 13 (92.9) Black or African American 1 (.04) 1 (8.3) 0 Hispanic or Latinx 1 (.04) 0 1 (7.1) Asian or Pacific Islander 2 (.08) 2 (16.7) 0 Multiracial or Biracial 1 (.04) 1 (8.3) 0 OTA 17 (65.4) 10 (83.3) 7 (50.0) PTA 9 (34.6) 2 (16.7) 7 (50.0) 1st Semester 5 (19.2) 2 (16.7) 3 (21.4) 2nd Semester 10 (38.5) 5 (41.7) 5 (35.7) 3rd Semester 11 (42.3) 5 (41.7) 6 (42.9) Family 19 (73.1) 9 (75.0) 10 (71.4) Paid work 12 (46.2) 3 (25.0) 9 (64.3) Sex Race White or Caucasian Area of study Semester enrolled Experiences with older adultsa SIMULATION AND STUDENT ATTITUDES Characteristic 57 All Participants Group A (n = 12) Group B (n = 14) N (%) N (%) N (%) Leisure activities 4 (15.4) 1 (8.3) 3 (21.4) Educational settings 10 (53.8) 5 (41.7) 5 (35.7) Very good 7 (26.9) 1 (8.3) 6 (42.9) Good 13 (50.0) 8 (66.7) 5 (35.7) Acceptable 6 (23.1) 3 (25.0) 3 (21.4) Quality of experiences Note. OTA = Occupational Therapy Assistant Program; PTA = Physical Therapist Assistant Program; Group A = acute care setting followed by home-based setting; Group B = home-based setting followed by acute care setting. a Participants were able to select multiple options of experiences with older adults; therefore, percentages will not equal 100%. SIMULATION AND STUDENT ATTITUDES 58 Table 2 Comparison of FSA Factor Scores Across Simulation Experience and Settings (N = 26) Pre-simulation Post-Simulation 1 Post-Simulation 2 Mdn (IQR) Mdn (IQR) Mdn (IQR) p ES AAS 27.50 (16.00) 28.50 (13.00) 25.50 (18.00) <.001 1.01 FSA 97.00 (11.00) 98.00 (16.00) 100.00 (16.00) .214 .410 Stereotype 31.50 (5.00) 30.50 (6.00) 33.00 (9.00) .091 .510 Separation 29.50 (3.00) 30.00 (5.00) 29.50 (4.00) .870 .012 Affective 17.00 (3.00) 17.00 (3.00) 17.50 (3.00) .090 .510 Note. AAS = Ambivalent Ageism Scale; FSA = Fraboni Scale of Ageism; Mdn = Median; IQR = Interquartile range; ES = Effect size SIMULATION AND STUDENT ATTITUDES 59 Table 3 Comparison of AAS Scores Across Simulation Experience and Settings (N = 26) Pre- Post-Home Post-Acute Simulation Based Setting Care Setting Mdn (IQR) Mdn (IQR) p ES Mdn (IQR) p ES AAS 27.50 (16.00) 29.00 (16.00) .002 .967 26.00 (17.00) .042 .588 FSA 97.00 (11.00) 99.50 (17.00) .296 .293 99.00 (14.00) .886 .040 Stereotype 31.50 (5.00) 30.50 (8.00) .088 .486 32.50 (6.00) .186 .373 Separation 29.50 (3.00) 29.50 (4.00) .459 .207 30.00 (5.00) .940 .021 Affective 17.00 (3.00) 17.00 (3.00) .140 .418 17.00 (3.00) .360 .256 Note. AAS = Ambivalent Ageism Scale; FSA = Fraboni Scale of Ageism; Mdn = Median; IQR = Interquartile range; ES = Effect size SIMULATION AND STUDENT ATTITUDES Figure 1 Counterbalanced Study Design Note. This figure demonstrates the progression of each group through the simulation experiences. There were approximately four weeks between the pre-simulation assessment, simulation 1, and simulation 2. 60 SIMULATION AND STUDENT ATTITUDES Appendix A Permission from the author for the Fraboni Scale of Ageism 61 SIMULATION AND STUDENT ATTITUDES 62 Appendix B Fraboni Scale of Ageism Next to each item, place the number that best describes your answer based on the following scale: 1= strongly disagree 2= disagree 3= agree 4= strongly agree * Items are reverse-scored. 1. Teenage suicide is more tragic than suicide among the old. 2. There should be special clubs set aside within sports facilities so that old people can compete at their own level. 3. Many old people are stingy and hoard their money and possessions. 4. Many old people are not interested in making new friends preferring instead the circle of friends they have had for years. 5. Many old people just live in the past. 6. I sometimes avoid eye contact with old people when I see them. 7. I dont like it when old people try to make conversation with me. *8. Old people deserve the same rights and freedoms as do other members of our society. 9. Complex and interesting conversation cannot be expected from most old people. 10. Feeling depressed when around old people is probably a common feeling. 11. Old people should find friends their own age. *12. Old people should feel welcome at the social gatherings of young people. 13. I would prefer not to go to an open house at a seniors club, if invited. SIMULATION AND STUDENT ATTITUDES *14. Old people can be very creative. 15. I personally would not want to spend much time with an old person. 16. Most old people should not be allowed to renew their drivers licenses. 17. Old people dont really need to use our community sports facilities. 18. Most old people should not be trusted to take care of infants. 19. Many old people are happiest when they are with people their own age. 20. It is best that old people live where they wont bother anyone. *21. The company of most old people is quite enjoyable. *22. It is sad to hear about the plight of the old in our society these days. *23. Old people should be encouraged to speak out politically. *24. Most old people are interesting, individualistic people. 25. Most old people would be considered to have poor personal hygiene. 26. I would prefer not to live with an old person. 27. Most old people can be intimidating because they tell the same stories over and over 28. Old people complain more than other people do. 29. Old people do not need much money to meet their needs. 63 SIMULATION AND STUDENT ATTITUDES Appendix C Permission from the author for the AAS 64 SIMULATION AND STUDENT ATTITUDES Appendix D The Ambivalent Ageism Scale 65 SIMULATION AND STUDENT ATTITUDES 66 SIMULATION AND STUDENT ATTITUDES Appendix E Permission from the author for the FAQ-2 67 SIMULATION AND STUDENT ATTITUDES Appendix F Palmores Facts on Aging Quiz Multiple Choice Version 68 SIMULATION AND STUDENT ATTITUDES 69 SIMULATION AND STUDENT ATTITUDES 70 SIMULATION AND STUDENT ATTITUDES 71 SIMULATION AND STUDENT ATTITUDES 72 Appendix G Acute Care Simulation Evaluations Patient Name: Treating Clinician: Date of Birth: Date and Time: Referring Physician MD Order: Reason for Referral: Primary Diagnosis: Past Medical History: Prior Functional Status: Patients Subjective Weight Bearing Status: Safety Measures: Rehabilitative Prognosis: Mental Status/ Cognition: McHenry County College Hospital Occupational Therapy Evaluation Alice Smith Emily Baker, OTR/L 6/30/1949 11/13/2022 1505-1540 Dr. Bernard Jones Patient Information and History OT evaluation and treatment Client admitted to hospital for increased shortness of breath and weight gain. Patient fell at home on 11/12/2022, stating she became tangled in her oxygen tubing as she was walking between the kitchen and the bathroom. No fractures per x-rays, however does have bruising over R hip. CHF exacerbation COPD exacerbation Essential tremor Hypertension Ileostomy Pt is single, lives a ranch home with 2 steps to enter. Walk-in shower with grab bars and tub seat. Comfort-height toilet, no grab bars. Use of O2 at home. Patient independent with most ADL and simple IADL at home, including bathing and dressing. Patient cooks simple meals on cooktop and microwave, manages medications. Family drives her for shopping and appointments. I cannot believe how difficult all of this is right now FWB BUE and BLE Fall Risk Excellent AXOX4 LTM appears WFL STM appears WFL Follows 2-3 step direction Attention WNL SIMULATION AND STUDENT ATTITUDES Vitals: 73 BP 132/76, O2 98% @ 4L, HR 71, RR 15 Performance Skills and Components: Motor & Perceptual Skills: Hand Dominance: R handed Gross Motor: RUE WFL; LUE WFL Fine Motor: significant tremors impacting FMC bilaterally Bilateral Integration: WFL Visual Motor: WFL Perceptual: WFL UE Sensation: WFL Pain: 4/10 Site: R hip Quality of Pain: Sore, tender Range of Motion and Manual Muscle Testing MMT AROM Right Left Right Left Right Shoulder: -Flexion -Extension -Abduction -Adduction -Internal Rotation -External Rotation PROM Left 4/5 4/5 4/5 4/5 4/5 3/5 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL Elbow: -Flexion -Extension 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Forearm: -Supination: -Pronation: 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Wrist: -Flexion -Extension 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL SIMULATION AND STUDENT ATTITUDES -Ulnar Deviation -Radial Deviation Grip Strength: 74 4/5 4/5 WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL Right 40 lbs Left 35 lbs Grooming UB Bathing LB Bathing UB Dressing LB Dressing Toileting Toilet Transfer Shower Transfer Meal Prep Bed Mobility Ambulation Skilled analysis of safety or Deficit Area or Problems: Current Levels of Function Minimum Assistance Minimum Assistance Moderate Assistance Minimum Assistance Moderate Assistance Minimum Assistance Minimum Assistance Unable to assess Unable to assess Minimum Assistance Minimum Assistance with Rolling Walker Assessment: Patient presents with overall generalized weakness and poor activity tolerance with safe completion of ADL and functional mobility. Patients decreased strength and endurance places her at a high fall risk. Patient demonstrates good motivation and prior level of independence, indicating good potential. Patient would benefit from skilled OT to address ADL retraining, functional mobility training, education and compensatory strategies to increase her safety and independence with ADLs and transfers. Goals: 1. Patient will safely complete upper body ADL in standing at sink by 11/17/22. 2. Patient will complete upper body dressing while seated at edge of bed with supervision by 11/17/22. 3. Patient will verbalize 3 energy conservation strategies to perform with basic ADL tasks by 11/16/22. 4. Patient will perform supine to sitting at edge of bed with supervision by 11/16/22. 5. Patient will independently initiate breathing techniques/strategies when noting shortness of breath by 11/17/22. SIMULATION AND STUDENT ATTITUDES Discharge Recommendations: Frequency of Occupational Therapy: 75 Plan of Care SNF vs. Home health pending patient progress 1x daily until transferred to next setting. Interventions (CPT Codes): 97166 OT Evaluation Moderate Complexity Emily Baker, OTR/L Therapist Name: Emily Baker, OTR/L Date and Time: ____11/13/2022 1505-1540_____ Patient Name: Treating Clinician: Date of Birth: Date and Time: Referring Physician MD Order: Reason for Referral: Primary Diagnosis: Past Medical History: Prior Functional Status: McHenry County College Hospital Physical Therapy Evaluation Alice Smith Morgan Adcock, PT 6/30/1949 11/13/22 1245-1320 Dr. Bernard Jones Patient Information and History PT evaluation and treatment Client admitted to hospital for increased shortness of breath and weight gain. Patient fell at home on 11/12/2022, stating she became tangled in her oxygen tubing as she was walking between the kitchen and the bathroom. No fractures per x-rays, however does have bruising over R hip. CHF exacerbation COPD exacerbation Essential tremor Hypertension Ileostomy Pt is single, lives a ranch home with 2 steps to enter. Walk-in shower with grab bars and tub seat. Comfort-height toilet, no grab bars. Use of O2 at home. Patient independent with most ADL and simple IADL at home, SIMULATION AND STUDENT ATTITUDES Patients Subjective Weight Bearing Status: Safety Measures: Rehabilitative Prognosis: Mental Status/ Cognition: Vitals: 76 including bathing and dressing. Patient cooks simple meals on cooktop and microwave, manages medications. Family drives her for shopping and appointments. It is so hard to even get out of bed right now. FWB BUE and BLE Fall Risk Excellent AXOX4 LTM appears WFL STM appears WFL Follows 2-3 step direction Attention WNL BP 132/76, O2 98% @ 4L, HR 71, RR 15 Current Levels of Function Toilet Transfer Bed Mobility Supine to Sit Sit to Stand Static Sitting Dynamic Sitting Static Standing Dynamic Standing Ambulation level/distance Ambulation device Comments UE Shoulder: -Flexion -Extension -Abduction -Adduction Minimum Assist to bedside commode Minimum Assistance Minimum Assistance Minimum Assistance Good GoodGoodFair+ 20 ft with Minimum Assistance RW Client reports fatigue with basic functional transfers in acute care setting. Range of Motion and Manual Muscle Testing MMT AROM Right Left Right Left Right 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL PROM Left WFL WFL WFL WFL SIMULATION AND STUDENT ATTITUDES -Internal Rotation -External Rotation 77 4/5 4/5 WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL Elbow: -Flexion -Extension 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Forearm: -Supination: -Pronation: 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Wrist: -Flexion -Extension 4/5 4/5 4/5 4/5 MMT Right Left WFL WFL WFL WFL Right WFL WFL AROM Left Right WFL WFL PROM Left 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4-/5 4-/5 4-/5 4-/5 WFL WFL WFL WFL WFL WFL WFL WFL 4-/5 4-/5 4-/5 4-/5 WFL WFL WFL WFL WFL WFL WFL WFL LE Hip: -Flexion -Extension -Abduction -Adduction Knee: -Flexion -Extension Ankle : -Dorsiflexion -Plantar flexion Comments: Skilled analysis of safety or Deficit Area or Problems: Assessment: Patient admitted to hospital due to CHF and COPD exacerbation, resulting in decreased activity tolerance, decreased balance, and generalized weakness, impacting her safety with completing safe mobility. Client would benefit from skilled PT to address mobility, balance, strength and safety education. Goals: 1. Patient will ambulate 100ft with rolling walker and supervision by 11/17/22. 2. Patient will complete supine to sitting at edge of bed with modified independence by 10/15/22. 3. Patient will complete home exercise program with independence by 11/17/22. SIMULATION AND STUDENT ATTITUDES 78 4. Patient will complete sit<>stand from various surfaces with supervision by 11/18/22. Discharge Recommendations: Frequency of Occupational Therapy: Plan of Care SNF vs. Home health pending patient progress 1x daily until transferred to next setting. Interventions (CPT Codes): 97162 PT Evaluation Moderate Complexity Morgan Adcock, PT Therapist Name: Morgan Adcock, PT Date and Time: ____11/13/2022 1245-1320_____ Patient Name: Treating Clinician: Date of Birth: Date and Time: Referring Physician MD Order: Reason for Referral: Primary Diagnosis: Past Medical History: Prior Functional Status: Home Health Occupational Therapy Evaluation Hannah Jones Kenneth Czepanksi, MS, OTR/L 03/26/1948 11/13/22 Dr. Irene Davidson Patient Information and History OT evaluation and treatment Client admitted to hospital for increased shortness of breath and weight gain due to CHF and COPD exacerbation and fall at home onto her R hip with no acute fractures. Patient discharged from hospital on 11/12/22 to home. Generalized weakness HTN, Hypercholesteremia, Bilateral cataract surgery (Nov 2019), Left total hip replacement (July 2020) Pt is single, lives in a ranch home with 1 step to enter. Tub shower with grab bars and tub seat. Raised toilet seat. Rollator walker. Use of O2 (2L) at home. Patient mod I with most ADL at home, including bathing and dressing. Patient cooks small meals (mainly microwave), manages medications. Friend drives her for shopping and appointments. SIMULATION AND STUDENT ATTITUDES Patients Subjective Weight Bearing Status: Safety Measures: Rehabilitative Prognosis: Mental Status/ Cognition: Vitals: 79 It is so good to finally be home FWB BUE and BLE n/a Excellent AXOX4 LTM appears WFL STM appears WFL Follows 2-3 step direction Attention WNL BP 128/70, O2 97% @ 2L, HR 72, RR 16 Performance Skills and Components: Motor & Perceptual Skills: Hand Dominance: R handed Gross Motor: RUE WFL; LUE WFL Fine Motor: WNL Bilateral Integration: WFL Visual Motor: WFL Perceptual: WFL UE Sensation: WFL Pain: 1/10 Site: R hip Quality of Pain: Sore, tender Range of Motion and Manual Muscle Testing MMT AROM Right Left Right Left Right Shoulder: -Flexion -Extension -Abduction -Adduction -Internal Rotation -External Rotation PROM Left 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL SIMULATION AND STUDENT ATTITUDES 80 Elbow: -Flexion -Extension 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Forearm: -Supination: -Pronation: 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL 4/5 4/5 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL Right 40lbs Left 35lbs Wrist: -Flexion -Extension -Ulnar Deviation -Radial Deviation Grip Strength: Grooming UB Bathing LB Bathing UB Dressing LB Dressing Toileting Toilet Transfer Shower Transfer Meal Prep Bed Mobility Ambulation Skilled analysis of safety or Deficit Area or Problems: Current Levels of Function Independent up at sink Independent (sponge bathing only at this time) Supervision while sitting on toilet (sponge bathing only at this time) Independent Supervision Modified Independent Modified Independent Patient notes she has not attempted shower transfer at this time States friend has been bringing meals. Has not attempted meal prep. Modified Independent Modified Independent with rollator Assessment: Patient lives alone in 1 story ranch and was previously independent with all ADL and most IADL. Patient currently demonstrates decreased activity tolerance which impacts her ability to fully participate in her home environment, especially in areas of bathing, meal preparation, and home management. Patient to benefit from skilled OT to address ADL and IADL retraining, education and compensatory strategies including energy conservation and work simplification to increase her safety and independence with ADLs and IADLs and to reduce risk of falls at home. SIMULATION AND STUDENT ATTITUDES LTG: -STG: LTG: -STG: LTG: LTG: Goals: 1. Patient will safely complete bathing in shower, using DME as needed, with modified independence by 11/26/22. 1a. Patient will perform shower transfer with modified independence by 11/22/22 2. Patient will complete a simple meal in kitchen with modified independence, while utilizing learned energy conservation and work simplification strategies by 11/26/2022. 2a. Patient will verbalize at least 5 energy conservation or work simplification strategies to utilize with ADL or IADL by 11/21/22 3. Patient will complete simple home management tasks with modified independence by 11/26/22. 4. Patient will independently complete home exercise program by 11/24/22. Discharge Recommendations: Frequency of Occupational Therapy: Plan of Care To self-care at home with assistance as needed from friends. 2x/week for 2 weeks Billing: 1 OT Unit Kenneth Czepanski, MS, OTR/L Therapist Name: Kenneth Czepanski, MS, OTR/L Date and Time: ____10/13/2022 Patient Name: Treating Clinician: Date of Birth: Date and Time: Referring Physician MD Order: 81 10:12AM-11:15AM_____ Home Health Physical Therapy Evaluation Hannah Jones Anya Fisher, PT 11/13/1948 1305-1400 Dr. Irene Davidson Patient Information and History PT evaluation and treatment SIMULATION AND STUDENT ATTITUDES Reason for Referral: Primary Diagnosis: Past Medical History: Prior Functional Status: Patients Subjective Weight Bearing Status: Safety Measures: Rehabilitative Prognosis: Mental Status/ Cognition: Vitals: Patient admitted to hospital for increased shortness of breath and weight gain due to CHF and COPD exacerbation and fall at home onto her R hip with no acute fractures. Patient discharged from hospital on 11/12/22 to home. Generalized weakness HTN, Hypercholesteremia, Bilateral cataract surgery (Nov 2019), Left total hip replacement (July 2020) Pt is single, lives a ranch home with 1 step to enter. Tub shower with grab bars and tub seat. Raised toilet seat. Use of cane in home and outside of home. Use of O2 (2L) at home. Patient mod I with most ADL at home, including bathing and dressing. Patient cooks small meals (mainly microwave), manages medications. Friend drives her for shopping and appointments. I feel shaky and unsteady at times FWB BUE and BLE n/a Excellent AXOX4 LTM appears WFL STM appears WFL Follows 2-3 step direction Attention WNL BP 128/70, O2 97% @ 2L, HR 72, RR 16 Current Levels of Function Toilet Transfer Bed Mobility Supine to Sit Sit to Stand Static Sitting Dynamic Sitting Static Standing Dynamic Standing Ambulation level/distance 82 Modified Independent Independent Modified Independent with bed rail Modified Independent Good+ Good Good Good 120 ft with Supervision SIMULATION AND STUDENT ATTITUDES Ambulation device Comments UE Shoulder: -Flexion -Extension -Abduction -Adduction -Internal Rotation -External Rotation 83 Rollator Patient requires extra time with transfers and ambulation in the home due to decreased endurance. Range of Motion and Manual Muscle Testing MMT AROM Right Left Right Left Right PROM Left 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4/5 4/5 WFL WFL WFL WFL Elbow: -Flexion -Extension 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Forearm: -Supination: -Pronation: 4/5 4/5 4/5 4/5 WFL WFL WFL WFL WFL WFL WFL WFL Wrist: -Flexion -Extension 4/5 4/5 4/5 4/5 MMT Right Left WFL WFL WFL WFL Right WFL WFL AROM Left Right WFL WFL PROM Left 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 4-/5 WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL WFL 4-/5 4-/5 WFL WFL WFL WFL LE Hip: -Flexion -Extension -Abduction -Adduction Knee: -Flexion SIMULATION AND STUDENT ATTITUDES -Extension Ankle : -Dorsiflexion -Plantar flexion Comments: 84 4-/5 4-/5 WFL WFL WFL WFL 4-/5 4-/5 4-/5 4-/5 WFL WFL WFL WFL WFL WFL WFL WFL Special Tests: Berg Balance Scale: 42 - unable to turn 360 in less than 4 seconds and perform tandem/SLS Pain: 3/10; R upper thigh Skilled analysis of safety or Deficit Area or Problems: LTG 1: STG 1a: LTG 2: STG 2a: LTG 3: PT POC Discharge Recommendation s Frequency of Physical Therapy: Assessment: Patient presents with generalized weakness and decreased endurance following recent hospitalization. Mild balance impairment also places patient at risk of falls in the home. Patient would benefit from skilled PT to address mobility, balance, strength and safety education. Goals: 1. Patient will increase SLS to 4 seconds on R/L to decrease risk of falls by 11/26/22. 1a. Patient will increased UE MMT to 4+/5 to allow for reaching tasks into upper and lower cabinets by 11/19/22. 2. Patient will demonstrate modified independence with ambulation around home with single point cane by 11/26/22. 2a. Patient will ambulate 100 ft with single point cane and supervision in home environment, demonstrating good- balance by 11/22/22. 3. Patient will be independent with home exercise program by 11/26/22. Plan of Care Patient will benefit from therapeutic exercise for LE/UE strengthening; gait training and static/dynamic balance education; and education for safety to decrease falls risk. Patient may benefit from outpatient PT once no longer homebound. Will continue to assess. 2x/week x 2 weeks SIMULATION AND STUDENT ATTITUDES Interventions (CPT Codes): 1 PT Unit Anya Fisher, PT Therapist Name: Anya Fisher, PT Date and Time: ____11/13/22 1305-1400_____ 85  ...

... Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease in Women: A Pilot Study Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Dawn Osborne, PT, DPT Copyright April 19, 2023 By: Dawn Osborne, PT, DPT All rights reserved Approved by: Elizabeth Moore, Ph.D. Committee Chair ______________________________ Heidi Ewen, Ph.D., FGSA, FAGHE Committee Member ______________________________ Anne Mejia-Downs, PT, MPH, Ph.D. Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ PT AND CVD IN WOMEN 1 Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease and Health in Women: A Pilot Study Dawn Osborne Department of Interprofessional Health and Aging Studies, University of Indianapolis PT AND CVD IN WOMEN 2 Abstract Purpose: The purpose of this study was to investigate whether an educational session on cardiovascular disease (CVD) history, prevalence, signs, symptoms, and risk factors in women affects physical therapists (PTs) and physical therapist assistants (PTAs) knowledge of CVD and attitudes toward CV screening and patient education and whether it would affect professionals willingness to perform these tasks. Methods: Licensed PTs and PTAs with at least one year of experience were included in the study and attended a single educational session of 1.5 hours during a live conference. A modified version of the Determinants of Implementation Behavior Questionnaire was used for the pre-session and post-session surveys, with eight domains included. A total of 18 matched data sets qualified for analysis. Results: Analysis indicated that all domains improved following the educational session, with six of eight having statistically significant change. A predictive behavior model using hierarchical regression analysis and the Capabilities, Opportunities, Motivation-Behavior Model, was not possible due to the low sample size; however, Beliefs about Consequences demonstrated the most significance when considering behavior change. Conclusion: The study indicated that knowledge and attitudes both improved following an educational session. It supports the need for continuing education opportunities for professionals on cardiovascular health and preventive education topics to stimulate the involvement of the profession in these health arenas. Although limited in power, it also indicates that education sessions that include consequences of professional actions and involvement could be very impactful for behavior change. Keywords: cardiovascular disease, women, physical therapy, education, screening, knowledge, attitudes. PT AND CVD IN WOMEN 3 Acknowledgements I want to thank the faculty of the DHSc program at UIndy for your guidance and mentoring over the past few years. Your classes and instruction have helped shape me into the professional I am today. A special thank you to my committee members, Dr. Elizabeth Moore, Dr. Heidi Ewen, and Dr. Anne Mejia-Downs, for your patience, expertise, and time with this project. I have learned a lot from all of you throughout this process. Thank you for challenging me and giving me something to aspire to. Finally, thank you to my family and friends who supported me through this journey and offered me support and encouragement. My husband, Jay Osborne, deserves a special thank you for giving me the circumstances to focus on completing this dissertation and my DHSc. Thank you to my three children, Eve (11), Cannon (9), and Zion (2), and especially Eve & Cannon. This journey has probably affected you the most and thank you for your understanding and patience when I needed to be absent to work on this project. I hope you can be proud of this project that we have accomplished together. I love you. PT AND CVD IN WOMEN 4 Table of Contents Abstract ........................................................................................................................................... 2 Acknowledgements ......................................................................................................................... 3 Table of Contents ............................................................................................................................ 4 List of Tables .................................................................................................................................. 8 List of Figures ................................................................................................................................. 9 Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease and Health in Women: A Pilot Study ..................................................... 10 Problem Statement .................................................................................................................... 11 Purpose Statement ..................................................................................................................... 12 Objectives .............................................................................................................................. 12 Significance of the Study .......................................................................................................... 13 Literature Review.......................................................................................................................... 13 Prevalence of Cardiovascular Disease ...................................................................................... 13 Impact of Cardiovascular Disease ............................................................................................. 14 Health Disparities ...................................................................................................................... 15 Cardiovascular Disease and Women ......................................................................................... 16 Screening, Prevention, and Education....................................................................................... 16 Physical Therapy Education and Training in Cardiovascular Disease ..................................... 18 Physical Therapists Attitudes and Behaviors Toward Cardiovascular Screening ................... 22 Barriers to Cardiovascular Screening ........................................................................................ 25 The Contribution of the PT Profession ..................................................................................... 28 Conclusion................................................................................................................................. 28 PT AND CVD IN WOMEN 5 Method .......................................................................................................................................... 29 Study Type and Study Design ................................................................................................... 29 Participants ................................................................................................................................ 29 Setting........................................................................................................................................ 29 Data ........................................................................................................................................... 30 Participant Demographic Data............................................................................................... 30 Participant Characteristics Data............................................................................................. 30 Patient/Clientele Characteristics ............................................................................................ 31 Participant Workload Characteristics .................................................................................... 31 Outcome Data ........................................................................................................................ 32 Instruments ................................................................................................................................ 32 Determinants of Implementation Behavior Questionnaire .................................................... 32 Procedures ................................................................................................................................. 34 Recruitment ........................................................................................................................... 34 Informed Consent .................................................................................................................. 34 Data Collection ...................................................................................................................... 35 Intervention ............................................................................................................................ 35 Data Management .................................................................................................................. 36 Statistical Analysis .................................................................................................................... 36 Results ........................................................................................................................................... 37 Knowledge Change from Educational Session ......................................................................... 38 Attitude Change from Educational Session .............................................................................. 38 Behavioral Influences and Change ............................................................................................ 39 PT AND CVD IN WOMEN 6 Predicting Behavior Change...................................................................................................... 40 Correlations ............................................................................................................................... 41 Discussion ..................................................................................................................................... 42 Knowledge Changes .................................................................................................................. 42 Knowledge by Age & Experience ............................................................................................. 42 Attitude Changes ....................................................................................................................... 44 Attitudes Considering Opportunity of Behavior ................................................................... 45 Attitudes Considering Motivation of Behavior ..................................................................... 47 Predicting Behavior Change...................................................................................................... 48 Limitations ................................................................................................................................ 49 Conclusion................................................................................................................................. 50 Future Research ......................................................................................................................... 50 References ..................................................................................................................................... 53 Appendix A: Informed Consent .................................................................................................... 73 Informed Consent ...................................................................................................................... 73 Pre-Session Informed Consent .............................................................................................. 73 Post-Session Informed Consent ............................................................................................. 74 Appendix B: Pre-Session Survey Sample ..................................................................................... 77 Appendix C: Post-Session Survey Sample ................................................................................... 98 Appendix D: Application of COM-B Behavior Model Components, DIBQ Domains, & Survey Statements ................................................................................................................................... 111 Appendix E: Sample Educational Flyers .................................................................................... 116 Flyer for Communal Areas ...................................................................................................... 117 PT AND CVD IN WOMEN 7 Flyers for Individual Hand-outs .............................................................................................. 118 Appendix F: Educational Session Handouts ............................................................................... 120 PT AND CVD IN WOMEN 8 List of Tables Table 1. Participant Demographics. Table 2. Domain Composite Scores Mean and Standard Deviations from Pre- and 65 Post-Session Surveys. 67 Table 3. Capability, Opportunity, Motivation Behavior Model Composite Scores Mean and Standard Deviations from Pre- and Post-Session Surveys... Table 4. 68 Predicting Intent to Change Behavior by Changes in Domains using Hierarchical Variable Entry... 69 Table 5. Correlations Among Domain Composite Scores Post-Session Survey 70 Table 6. Paired t-test of Domains versus Demographic Variables.. 71 PT AND CVD IN WOMEN 9 List of Figures Figure 1. Domains as Effecting Change in Behavior .. 72 PT AND CVD IN WOMEN 10 Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease and Health in Women: A Pilot Study Cardiovascular disease (CVD) is the number one cause of death for women in the United States (U.S.), with one in every five female deaths caused by heart disease (Centers for Disease Control and Prevention [CDC], 2017; Wenger et al., 2018). Projections for the year 2035 predict that women will have increases in CVD diagnoses and substantial growth in specific diagnoses of hypertension, congestive heart failure, and atrial fibrillation (Khavjou et al., 2016; Robinson, 2017). There is a traditional belief that women are affected by heart disease and cardiovascular disease later in life, specifically post-menopause; however, current research shows that one-third of new cardiovascular issues occur before the age of 65 years, and at least one-seventh occur before the age of 55 years (Khan et al., 2021; Sniderman et al., 2016). Recent data from 2018 show the rate of CVD mortality, specifically heart disease, is increasing, particularly for women younger than 65 years (Khan et al., 2021). In addition, women aged 25 to 34 years old and 55 to 64 saw an increase in heart disease mortality (Khan et al., 2021). Only about half of the women in the U.S. recognize heart disease as their top health threat (Bairey Merz et al., 2017; CDC, 2017b). Additionally, awareness may be lacking within the healthcare system and among professionals with women-specific CVD symptoms being overlooked and CVD lacking priority as a female health concern (Bairey Merz et al., 2017; Kiamco-Millman & Pinto-Zipp, 2013). Physicians may also lack confidence or training in dealing with cardiovascular health and risk in women (Bairey Merz et al., 2017). Only 22% of primary care physicians (PCP) and 42% of cardiologists reported being extremely well-prepared to assess CVD risk in women, while 49% of PCPs and 59% of cardiologists felt prepared to assess CVD risk in women (Bairey Merz et al., 2017). Finally, when asked about physiological PT AND CVD IN WOMEN 11 differences between the male and female heart, only 49% of PCPs and 52% of cardiologists stated they were different (Bairey Merz et al., 2017). Problem Statement Research has indicated that numerous healthcare professionals, including PCPs, cardiologists, obstetricians/gynecologists, and nurses, identify barriers in screening for CVD and providing prevention education. In addition, they have reported that they do not screen or educate patients on CVD very often (Bairey-Merz et al., 2017; Kiamco-Miller & Pinto-Zipp, 2013). Barriers such as lack of time, reimbursement, awareness, confidence, perceived importance, system value, and other health priorities taking precedence are reasons identified for low performance of screening and preventative health patient education (Bairey-Merz et al., 2017; Kiamco-Miller & Pinto-Zipp, 2013; Pregler et al., 2009). With so many healthcare professionals failing to provide prevention education for their patients, the issue would benefit from an interprofessional and interdisciplinary approach that would include as many healthcare practitioners as possible. Physical therapy professionals have skills that could contribute to preventative medicine. Identifying CVD modifiable risk factors like monitoring blood pressure (BP), assessing activity levels, calculating body mass index (BMI), educating about safe exercise, and educating about other lifestyle modifications are in compliance with the scope of physical therapy practice (American Physical Therapy Association [APTA], 2021c). However, many physical therapists (PTs), like other healthcare professionals, perform CVD screenings and education in limited quantities, and it is not included in patient assessments or treatment plans (Arena et al., 2018; Frese et al., 2011; Rethorn et al., 2021; Scherer et al., 2005; Severin et al., 2019; Severin et al., 2020). PT AND CVD IN WOMEN 12 Understanding the current knowledge and attitudes of PTs and physical therapist assistants (PTAs) related to female CV screening and lifestyle education can provide evidence on what areas need to be addressed so physical therapy can be better equipped to join the fight against CVD more actively and publicly. Once it is known what PTs and PTAs know and do not know about CVD in women, educational opportunities can be provided to improve their knowledge and awareness of the topic, which could also affect their attitudes and practice (Arena & Peterson, 2020; Kiamco-Miller & Pinto-Zipp, 2013; Pregler et al., 2009). These efforts align with goals outlined within the APTAs strategic plan for PTs and PTAs to elevate the quality of care provided by PTs and PTAs (APTA, 2021b, p. 1) and participate in public policy goals related to population health (APTA, 2021a). Purpose Statement The purpose of this study was to investigate whether an educational session on CVD prevalence, signs, symptoms, and risk factors in women affected PTs and PTAs knowledge of CVD and attitudes toward female CV screening within their profession, including views on professional roles and responsibilities, self-efficacy, and confidence in performing these tasks. The following objectives were explored to address the studys purpose. Objectives 1. To determine whether an educational session on CVD in women impacted PTs and PTAs knowledge of risk factors and signs and symptoms of CVD in women as measured with a modified version of the Determinants of Implementation of Behavior (DIBQ). 2. To determine whether an educational session on CVD in women affected PTs and PTAs attitudes toward screening women for signs and symptoms and risk factors of CVD within their profession as measured with a modified version of the DIBQ. PT AND CVD IN WOMEN 13 Significance of the Study The study provided education on a significant public health issue and investigated determinants of behavior of physical therapy professionals regarding their willingness to engage in screening, prevention, and health promotion patient education. Physical therapy professionals have expertise pertinent to CVD prevention and education and typically have significant contact time with their clients, offering them a unique opportunity to screen and educate. The study contributed information on an important public health issue in which the physical therapy profession can make a positive contribution. Literature Review Statistics show that non-communicable diseases are on the rise and have taken over infectious diseases as the leading reason for mortality, with CVD being the highest cause of death (Chen et al., 2018; Virani et al., 2021). Furthermore, CVD is the leading cause of death globally and in the U.S., and the number of annual deaths attributed to CVD is only expected to grow (CDC, 2021; Khavjou et al., 2016). Prevalence of Cardiovascular Disease CVD is a broad term that encapsulates several conditions. A very threatening CV condition is heart disease. It is the leading cause of CVD death for both men and women in the U.S. (2017a). Heart disease is a significant threat to all racial and ethnic groups in the U.S. (CDC, 2017a). Within the U.S., heart disease has been the leading cause of death since 1921, and it has had continued growth every year since 2015 (Ahmad & Anderson, 2021; CDC, 1999; CDC, 2021; Khavjou et al., 2016). It claims more lives annually than all forms of cancer and chronic lower respiratory diseases combined (Virani et al., 2021). PT AND CVD IN WOMEN 14 In 2016, a report prepared for the American Heart Association (AHA) projected that 45% of the population would have a CVD diagnosis by 2035 (Khavjou et al., 2016). However, the National Health and Nutrition Examination Survey (NHANES) data from 2015-2018 shows that 49.2% of the U.S. population, defined as males and females over 20 years old, already has a CVD diagnosis (Virani et al., 2021). The risk of CVD diagnosis and CVD mortality increases as an individual ages (National Institute on Aging [NIH], 2018). Disease risk steadily rises for individuals starting at approximately 40 years old (Sniderman et al., 2016). The disease risk rises sharply after 65 years of age (NIH, 2018; Sniderman et al., 2016). Impact of Cardiovascular Disease CVD is already estimated to be one of the costliest chronic conditions, and its continued growth will come with increased direct and indirect costs (Khavjou et al., 2016; Virani et al., 2021). The estimated summation of direct and indirect costs of CVD in 2015 was $555 billion, which is predicted to increase to $1.1 trillion by 2035 (Khavjou et al., 2016). Due to its prevalence and economic and societal impact, some form of cardiovascular health or disease goal has been included as an area of focus in Healthy People for the last 30 years (CDC, 2015a; CDC, 2015b; CDC, 2015c; Office of Disease Prevention and Health Promotion [ODPHP], n.d.). It is currently a core objective of Healthy People 2030 to improve cardiovascular health and reduce deaths from heart disease and stroke (ODPHP, n.d.). The goal includes supportive objectives to improve cardiovascular health, increase referrals to rehabilitation programs following heart attacks and stroke, decrease deaths from coronary heart disease, and reduce death from strokes (ODPHP, n.d.). PT AND CVD IN WOMEN 15 Health Disparities Although CVD affects all groups, significant health disparities are present regarding diagnosis, access to care, treatment, and mortality, and are present among gender, race, and ethnicity (Graham, 2015; Li et al., 2016; Virani et al., 2021). Non-Hispanic African Americans have the highest rate of CVD and have a 30% more chance of dying from heart disease than nonHispanic whites (Khavjou et al., 2016; Office of Minority Health [OMH], 2021). Non-Hispanic African Americans also have some of the highest rates of CVD risk factors, including obesity and hypertension, and are second in diabetes (Peters et al., 2019; Virani et al., 2021). Hispanic persons are often the next most threatened ethnic group with these conditions and risk factors (Virani et al., 2021). Within racial and ethnic groups, the data show that hypertension and obesity are more prevalent in females than males, which threatens their cardiovascular health (Byrd et al., 2018; Virani et al., 2021). Gender gap disparities were first illuminated in the 1980s when a divide started appearing between heart disease death rates between men and women (National Center for Health Statistics [NCHS], 2008; Zhang, 2010). Heart disease death was growing for women while decreasing for men. (NCHS, 2008; Zhang, 2010). In 2004, the American Heart Association (AHA) created a campaign, Go Red for Women, to address the increased risk of women having CVD relative to males and improve public awareness and education regarding cardiovascular risks and disease in women (AHA, 2019). This education is more crucial than ever, with trends indicating that CVD mortality is on the rise for all women, including younger women, and with more science becoming known about the specific risks women face across their lifespan (Agarwala et al., 2020; Garcia et al., 2016; Khan et al., 2021; Sniderman et al., 2006; Virani et al., 2021). Today, CVD for women is a crushing PT AND CVD IN WOMEN 16 public health concern, with 1 in 5 women dying from CVD, and over 70% of those could be prevented by lifestyle modification and early screening (CDC, 2017b; Garcia et al., 2016). Cardiovascular Disease and Women Females are the focus of this study due to the continued lag in the publics awareness of CVD severity for women, as well as discrepancies between male and female care for CVD (Agrawal et al., 2015; Bairey Merz et al., 2017; CDC, 2017b; Humphries et al., 2017; Wenger et al., 2018). Women have been found to receive suboptimal care compared to their male counterparts, which contributes to them having increased short-term and long-term mortality following cardiovascular events (Agarwala et al., 2020; Khan et al., 2021; Li et al., 2016; Rodriguez et al., 2016; Safford et al., 2015). Some research has concluded that almost 70% of the health disparities between genders could be removed if women received equal care (Li et al., 2016). Screening, Prevention, and Education Research has indicated healthcare providers have not provided adequate screening, primary prevention, and education for women (Bairey Merz et al., 2017). Despite CVD being the number one health threat to women in the U.S., a national survey of 200 primary care physicians (PCP) found that only 39% of those surveyed identified CVD as a top health concern (BaireyMerz et al., 2017; CDC, 2017b). The surveyed PCPs ranked breast health and an individuals weight ahead of CVD as health concerns (Bairey-Merz et al., 2017). In addition, survey research has found that physicians are not performing complete risk assessments on patients as suggested in published guidelines by the AHA (Bairey Merz et al., 2017). Research has also indicated that less than half of women remembered having heart assessments or screenings during a routine examination (Bairey Merz et al., 2017). Juxtapose that with almost half of the women indicating PT AND CVD IN WOMEN 17 they rely on their physician to discuss their heart healths pertinence or importance (Bairey Merz et al., 201). Women with heart screenings and assessments by their healthcare providers are twice as likely to discuss heart health with others (Bairey Merz et al., 2017). Increasing awareness is more critical than ever as women have more modifiable risk factors at younger ages (Agarwala et al., 2020; Khan et al., 2021). In addition, research reveals that early and frequent medical screening is essential to identifying and managing CVD (Arnett et al., 2019). The AHA and the CDC recommend that individuals know and assess their risk factors for heart disease through personal assessment and medical consultation (AHA, n.d.; AHA, 2018; CDC, 2019; CDC, 2020a). Women are not being educated about their risk factors. In one survey, 74% of respondents were identified as having at least one risk factor for heart disease; however, only 16% were told by their physicians that they had risk factors (Bairey Merz et al., 2017). There are seven health factors that the AHA states individuals should consider when assessing heart health (AHA, 2018). The campaign was coined My Life Check: Lifes Simple 7 and is ongoing (AHA, 2018). The components include managing blood pressure, controlling cholesterol levels, reducing blood sugar, exercising, eating a healthy diet, managing weight, and smoking cessation (AHA, 2018). Some of the seven factors included in the AHA education campaign are possible components in a medical history intake, subjective interview questions, or objective tests and measures during a physical therapy evaluation or follow-up visit (APTA, 2021c; Commission on Accreditation in Physical Therapy Education [CAPTE], 2020a; CAPTE, 2020b). Assessing blood pressure, subjective reports of regular physical activity, objective exercise testing, body mass index (BMI) calculations, smoking history or current behaviors, and other pertinent comorbidities like diabetes could be components PTs might review during a PT AND CVD IN WOMEN 18 clients visit. It has been reported that over 70% of all CVD are preventable with lifestyle modifications (Chomistek et al., 2015). CVD lifestyle modification, education, and health promotion for the patient, public, and professionals are crucial to minimizing the effects of CVD and heart disease on our society (Agarwala et al., 2020; AHA, 2017; Li et al., 2016; Robinson, 2017; Sniderman et al., 2016). More professionals working on screening, educating, and encouraging individuals make CVD prevention more attainable. Given the severity and impact of CVD in women, healthcare professionals should investigate what role they can play in addressing this public health issue and work with a concerted effort to prevent CVD and recognize that women have unique risk factors and signs and symptoms. Physical therapy professionals have skills to offer against this health crisis. But unfortunately, recent research has indicated that PTs are not exercising their skills in some of these areas, specifically monitoring blood pressure at rest or in response to exercise and assessing and promoting physical activity amongst their clientele (Arena et al., 2018; Frese et al., 2011; Rethorn et al., 2021; Scherer et al., 2005; Severin et al., 2019; Severin et al., 2020). Physical Therapy Education and Training in Cardiovascular Disease Physical therapy professionals have the necessary education and skills to screen individuals for CVD risk factors. The CAPTE requires programs to demonstrate how students learn entry-level skills about cardiovascular systems review, which includes the assessment of blood pressure, heart rate, respiration rate, and edema (CAPTE, 2020a, p. 30, footnote 51). These same components are defined as cardiovascular systems review in the Guide to Physical Therapist Practice (APTA, 2014a). Other components could be added to the cardiovascular system review to create a more comprehensive assessment, including subjective questions, PT AND CVD IN WOMEN 19 validated outcome tools and questionnaires, and objective tests and measures centered on endurance and aerobic capacity, circulation, and ventilation and respiration as indicated (APTA, 2014a; CAPTE, 2020a; Scherer, 2005). All physical therapy professionals receive entry-level education concerning the cardiovascular system anatomy and physiology and how to recognize signs of distress related to CVD (CAPTE, 2020a; CAPTE, 2020b). The Guide to Physical Therapist Practice (2014a) has practice patterns for cardiovascular and pulmonary conditions. The guide was first published in 1995 (APTA, 2014b). Its purpose was to be a reference for physical therapy students and professionals, guide their practice, and standardize the treatment patients with similar diagnoses receive from PTs (APTA, 2014b). The Academy of Cardiovascular and Pulmonary Physical Therapy, a specialty section of the APTA, has used special task forces to define entry-level competencies pertinent to the cardiovascular and pulmonary systems for PTs (Academy of Cardiovascular and Pulmonary Physical Therapy, n.d.). The most recent results came from surveys administered and results published in 2022 (Academy of Cardiovascular and Pulmonary Physical Therapy, 2022). A conglomeration of CAPTE requirements, domains within the Guide to Physical Therapist Practice (2014a), and additional resources from the Academy of Cardiovascular and Pulmonary Physical Therapy make up a cocktail that guides entry-level physical therapy education pertaining to cardiovascular health. Once practicing, continuing education courses and employee in-service and training account for less than 40% of identified educational sources for cardiovascular information (Severin et al., 2019). The research reporting this statistic was specific to outpatient PTs, who also stated that self-education through reading provided approximately 33% of cardiovascular education, and post-professional residency registered at about 11% (Severin et al., 2019). These PT AND CVD IN WOMEN 20 rates are significant because research has found that the more continuing education opportunities physical therapy professionals receive on the topic, the more likely they are to perform those skills (Arena & Peterson, 2020; Severin et al., 2019; Young et al., 2020). PTs working in outpatient settings have indicated that physical therapy education accounts for 94.9% of their education regarding tests and measures related to cardiovascular health and screening (Severin et al., 2019). This leads to the question of whether it is availability, accessibility, awareness, or attitude towards cardiovascular continuing education courses for outpatient PTs that creates such a significant percentage relying solely on entry-level education throughout their years in practice. This particular study had approximately 38% of respondents who had practiced physical therapy for more than 20 years, followed by 20% in the 0-5 years of professional practice, 16% for 6-10 years, and 12-13% in both the 11-15 and 16-20 years of experience each around (Severin et al., 2019). A more advanced branch of continuing education for physical therapy professionals is to pursue a board-certified specialty. The American Board of Physical Therapy Specialties has the opportunity for practicing clinicians to sit for the Board-Certified Clinical Specialist examination for Cardiovascular and Pulmonary Physical Therapy, often referred to as a CCS (APTA, 2020). This specialty is typically earned by those who are already working in settings where a significant portion of their caseload has cardiovascular and pulmonary diagnosis and conditions or those who are participating in a credentialed residency program for cardiovascular and pulmonary physical therapy care (American Board of Physical Therapy Specialists [ABPTS], n.d.). Currently, only nine of the 351 residency programs for PTs in the U.S. are designated for cardiovascular and pulmonary health (American Board of Physical Therapy Residency & Fellowship Education, n.d.). This quantity shows the limitations and the level of expertise to PT AND CVD IN WOMEN 21 pursue this type of post-licensure education and advanced practice instead of more accessible weekend or web-based continuing education courses. Regardless, PTs have self-reported high competency and understanding of the skills and information involved with performing cardiovascular screenings and assessments (Arena et al., 2018; Frese et al., 2002; Severin et al., 2019). Frese et al. (2002) surveyed PT clinical instructors from two universities and analyzed 387 responses. The overwhelming majority were female (82.8%) and practiced in an outpatient setting (43.4%). For years of professional practice, the largest group represented was 6-10 years of professional experience with 31.3%, followed by 0-5 years (30.8%), and then >15 years (23.5%). Despite low participation in BP and heart rate (HR) screening, with only 43% and 38% respectively saying they had taken those assessments on new patients in the week before the survey, only 0.8% of all respondents said they abstain from taking the assessments because of a lack of skill (Frese et al., 2002). Severin et al. (2019) reported a national survey with over 1800 surveys analyzed from PTs practicing in outpatient settings from all regions of the U.S., with slightly more than 50% coming from the Mid-North and Northeast. Professional experience varied among participants, but over 50% came from two categories, >20 years experience (38.6%) and 0-5 years experience (20.0%) (Severin et al., 2019). Gender distribution was not reported (Severin et al., 2019). Only 1.2% of respondents reported not performing HR and BP screenings because they did not feel competent in their abilities (Severin et al., 2019). Arena et al. (2018) analyzed 313 surveys from PTs practicing in outpatient settings in 6 Midwestern states in the U.S. Females composed 58.5% of the sample, while males composed 41.2% of the sample (Arena et al., 2018). Over 50% of professional experience representation came from categories that reported >10 years of practice, with the bulk of that coming from >20 PT AND CVD IN WOMEN 22 years of experience (32.3%) (Arena et al., 2018). An overwhelming majority (94.2%) of Arena et al. (2018) respondents stated they were confident in their ability to assess BP. However, correct answers were few when asked to identify the systolic and diastolic BP criteria for prehypertensive and hypertensive classifications (Arena et al., 2018). Prehypertensive systolic values were answered correctly by only 17.9%, and diastolic values were correctly answered by only 19.2% (Arena et al., 2018). Hypertensive systolic and diastolic values were answered correctly by 23.6% and 25.5%, respectively (Arena et al., 2018). Physical Therapists Attitudes and Behaviors Toward Cardiovascular Screening There remains a gap between PTs knowledge of CVD and their behavior in conducting various cardiovascular screening components by PTs (Albarrati, 2019; Arena et al., 2018; Frese et al., 2002; Rethorn et al., 2021; Scherer et al., 2005; Severin et al., 2019). The attitudes and value placed on performing cardiovascular screening and the information it provides is a vital connection from necessary knowledge to effective practice. PTs have expressed differing opinions about whether professionals should perform various cardiovascular assessments (Van Zant et al., 2013). Therefore, Van Zant et al. (2013) investigated PT perceptions of behaviors regarding the profession's role in educating CVD and CVD risk factors, primary prevention of CVD, identifying undiagnosed CVD risk, and monitoring cardiovascular status in a patient with a known CVD diagnosis. The study looked for a minimum of 80% agreement on practice behaviors surveyed among PTs to establish a minimum level of professional acceptance of the task (Van Zant et al., 2013). Some items had an overwhelming agreement at 95% or higher, such as education about smoking, instructing patients to monitor exercise intensity, performing submaximal exercise testing, assessing the benefits of exercise, monitoring cardiovascular response to exercise, identifying high BP, and clinically PT AND CVD IN WOMEN 23 identifying obesity (Van Zant et al., 2013). However, some items fell below the minimum amount of 80% agreement, including measuring body fat percentage, measuring and calculating BMI, educating on CVD family history, educating the patient on their blood chemistry profile, and educating on CVD medications (Van Zant et al., 2013). Other items skirted close to the qualification line between 80-85%, including conducting a cardiovascular system review, knowledge of secondary CVD prevention, identifying electrocardiogram abnormalities, and interpreting exercise intensity in metabolic equivalents (Van Zant et al., 2013). Contradictions were present, with 97% of PT respondents stating PTs should clinically identify obesity; however, only 60% agreed with measuring BMI, and only 33% agreed with measuring body fat percentage (Van Zant et al., 2013). Also, conducting a cardiovascular systems review had only 85% of respondents agree on that practice behavior (Van Zant et al., 2013). PTs routinely conduct a review of body systems during the patient evaluation, and the Guide to Physical Therapist Practice (2014a) clearly identifies a cardiovascular system review as an expectation for practice (APTA, 2009; CAPTE, 2020a; Van Zant et al., 2013; Young et al., 2020). Van Zant et al.'s (2013) survey respondents were heavily concentrated in academia, with 53% identifying it as their primary area of practice. Females comprised 73% of respondents, and 72% had 16 years or more experience in physical therapy practice (Van Zant et al., 2013). With the majority of respondents working in academia (53%), this data may not offer an accurate representation of clinically practicing PT professionals' attitudes and behaviors. Other research investigating PTs working in outpatient settings found that cardiovascular screening and a cardiovascular systems review were prioritized behind other body systems review components (Al-Sayegh et al., 2016; Arena et al., 2018; Scherer et al., 2005; Severin et al., 2019). PT AND CVD IN WOMEN 24 There is also the question and ambiguity of what a cardiovascular screen entails, particularly in the outpatient setting. It could be used to describe an extensive process or only a few components. One research article defined a basic cardiovascular screen as simply HR and BP assessment (Severin et al., 2019). Others measured the occurrence of cardiovascular screening, but the term lacked a definition by researchers or participants, so a degree of obscurity accompanied the survey results (Scherer et al., 2005). Some may consider the term "cardiovascular screening" solely as a baseline measurement of HR and BP. Others may interpret it as a more comprehensive approach with intake forms like the Physical Activity Readiness Questionnaire, medical history, assessment of vitals, pulse assessments, edema measurements, or exercise testing included. Severin et al. (2019) reported on basic cardiovascular screening, defined as HR and BP assessment, and collected additional data about attitudes and behaviors towards several cardiovascular tests and measures among outpatient PTs in a national survey (n = 1,812). The researchers included resting BP assessment, resting HR assessment, anthropometric measurements, assessing HR and BP during exercise, assessing recovery rates after exercise, formal exercise testing, and validated questionnaires or screening tools (Severin et al., 2019). These questions allowed for multiple selections and indicated other tests/measures that clinicians were "comfortable using to screen cardiovascular stability," as well as other "measures currently used to screen for heart disease" (Severin et al., 2019). Respondents reported actively using other screening tools with the highest frequencies in resting BP & HR, response and recovery HR & BP, RPE (Rating of Perceived Exertion Scale), and anthropometric measurements, such as BMI, body weight, & waist circumference (Severin et al., 2019). In addition, much higher frequencies were reported with the question concerning a clinicians' attitude, reported as comfort, to use PT AND CVD IN WOMEN 25 various and specific types of cardiovascular screening tools (Severin et al., 2019). This data matches the trend that self-reported competence is present without necessarily having the accompaniment of the correlating behavior. Physical therapy research has also focused on behaviors and attitudes towards specific cardiovascular assessments like BP assessment and vital signs (Albarrati, 2019; Frese et al., 2002; Scherer et al., 2005; Severin et al., 2019). Vital signs are a common and expected component of cardiovascular screening and evaluation; however, despite their familiarity, research regarding attitudes and practices of performing vital sign assessment continues to show low execution in the outpatient setting (Albarrati, 2019; Arena et al., 2018; Scherer et al., 2005; Severin et al., 2019). Concerning attitudes toward cardiovascular assessment, Frese et al. (2002) reported that 97% of PT respondents indicated they should identify hypertension and monitor cardiovascular response to exercise. Respondents in this survey were most represented by PTs working in outpatient settings (43.4%) but had representation in multiple other settings ranging from 1.3-16.1% (Frese et al., 2002). Studies that solely focused on PTs working in outpatient clinical settings indicated that as few as 52% of professionals view vital signs as a primary or secondary tool for monitoring patients, and only 45% state that BP and HR assessment were essential activities (Scherer et al., 2005; Van Zant et al., 2013). Additional research indicates that less than 25% of outpatient PTs surveyed believe assessing BP should be a routine activity at an evaluation or a treatment visit (Arena et al., 2018). Barriers to Cardiovascular Screening There have been reported improvements in a basic cardiovascular screening of BP & HR assessments in outpatient settings compared to research two decades ago (Severin et al., 2019). However, participation rates are still low in outpatient settings, with Arena et al. (2018) reporting PT AND CVD IN WOMEN 26 15.0% (n = 47) and Severin et al. (2019) reporting 14.8% (n = 268). In a national survey, the most common barriers reported were lack of time (37.4%) and lack of perceived importance (35.62%), citing that the assessments were not relevant to the clinicians patient population (Severin et al., 2019). Other considerations for barriers included confidence in ability (1.2%), equipment needs (6.0%), knowing how to utilize the information after the assessment (6.9%), and lack of institutional policy (14.4%) (Severin et al., 2019). An additional option of other for barriers was provided (26.8%), but no further specifics were offered (Severin et al., 2019). In comparison, the most common barrier reported in research two decades previously was that HR and BP assessment was not important for the clinicians patient population (52.3%) and lack of time (15.7%) (Frese et al., 2002). However, this study was not specific to outpatient therapists, had a smaller sample size (n = 387), and had a limited geographical sample (Frese et al., 2002). Frese et al. (2002) also demonstrated that lack of skill (0.8%) and lack of equipment (3.3%) were not significant barriers indicated. However, more popular reasons for not performing HR and BP assessments were that patient charts could provide the information, the intensive care unit monitored those measurements, and a common answer written in an other category of the survey at 19.8%) was that nurses monitored vitals and that HR and BP were only monitored when clinicians thought it necessary (Frese et al., 2002). The likelihood of screening improves when therapists self-identified their caseload as having higher percentages of individuals having moderate-to-high risk for CVD or an actual CVD diagnosis (Severin et al., 2019). However, this does not consider those who are undiagnosed and unrecognized. For example, hypertension is a form of cardiovascular disease and is a risk factor for numerous conditions. Hypertension has been referred to as the Silent Killer because there are no symptoms of hypertension until it has culminated into a larger PT AND CVD IN WOMEN 27 cardiac event or disease. Hypertension risk increases with age and is present even in adolescent years (CDC, 2020b; Wegner et al., 2018). However, hypertension can only be known if BP is assessed. Assessing BP for individuals who appear healthy and when it appears BP and HR assessment is not needed may be a missed opportunity to change the course of an individuals health through education and prevention or possibly intervention by referral. Monitoring the HR and BP of those with known risk factors keeps patients safe during physical activity and exercises during treatment sessions. An additional barrier identified in the research was a lack of clinic and institutional policy to mandate or consider cardiovascular screening as an expectation during client visits which lessens PTs perceptions that it should be a priority or appropriate use of their time (Arena et al., 2018; Severin et al., 2019). Research also found that when such policies were in place, they were cited as reasons why the assessments were performed (Severin et al., 2019). A study completed with nurses found that the perception and belief of how significant and influential others valued the behavior of heart disease education in women was significant to whether nurses performed the behavior (Kiamco-Millman & Pinto-Zipp, 2013). This study supports the importance of clinic and institutional policies; however, the study cited defined influential others to encompass not only physicians, administrators, and managers but also coworkers, patients, and patient families (Kiamco-Millman & Pinto-Zipp, 2013). Regardless, further education and awareness on the topic at the clinician level could facilitate change and the implementation of these types of policies to support this clinical behavior. Finally, the term cardiovascular screening, as discussed previously, can be widely applied. Working definitions of this term in research and clinical practice could vary and affect the clarity of the discussion. PT AND CVD IN WOMEN 28 The Contribution of the PT Profession The physical therapy profession could be an active participant in the screening and prevention of CVD for common risk factors, including BP assessment, measuring body mass index (BMI), evaluating physical activity, and offering patient education regarding healthy lifestyle choices, physical activity, and cessation of tobacco use (CDC, 2019). A team-based healthcare approach has been established as a successful enterprise in preventing CVD, and PTs can help identify risks for medical referral (APTA, 2009; Arnett et al., 2019; Boissonnault & Ross, 2012; Young et al., 2020). Research supports that there is a critical and relevant role for PTs to have in the performance of medical screening to ensure clients are safe to participate in exercise and PT sessions or are referred to appropriate medical professionals (Boissonnault & Ross, 2012; Ketkar et al., 2015; Mount et al., 2016; Ross et al., 2019; Scherer, 2009). For the role PTs can serve specific to cardiovascular disease in women, the impact is only amplified because women experience discrepancies in care and have some unique signs, symptoms, and additional risk factors that are less or not relevant to the male population. Conclusion CVD for women is a public health concern, and lifestyle modification and early screening could have tremendous effects on reversing its projected path (CDC, 2017b; Garcia et al., 2016). Additional healthcare professionals working on screening and educating women and fellow professionals have the potential to positively affect change. There is a gap in PT literature concerning CVD screening specific to women who may have a different presentation than men and continue to be underdiagnosed. Also, research has shown that continuing education improves the probability of PTs performing various cardiovascular screening practices (Arena et al., 2018; Arena & Peterson, 2020; Severin et al., 2019). Therefore, this study was undertaken to contribute PT AND CVD IN WOMEN 29 to research to examine if an educational session will change knowledge and attitudes about performing cardiovascular screenings for female patients, and not just those who are already diagnosed with a cardiovascular condition or risk by an outside source. The unidentified and undiagnosed individual could potentially have the most significant impact from early screening. Method Study Type and Study Design The study was a quasi-experimental, single-group, pretest-post-session design. The study explored whether a single educational session about CVD in women could impact physical therapy professionals knowledge of CVD in women and physical therapy professionals attitudes toward performing CVD screening and education. This educational session and data collection took place on October 7-8, 2022, at the APTA Kansas Fall Conference in Hays, Kansas. The University of Indianapolis Institutional Review Board approved the study on September 13, 2022, IRB#01686. Participants Study participants were physical therapy professionals, PTs, and PTAs, licensed in the U.S. and recruited from the state fall conference attendees. Inclusion criteria were PTs or PTAs licensed in the U.S. and a minimum of one year of licensed professional experience. An apriori ttest power analysis was performed with an estimated sample size of 105 for a medium effect. We ran a second apriori test for a linear multiple regression with medium effect and the total sample size was estimated at 107. These calculations were made with G*Power Version 3.1. Setting The study occurred during the APTA Kansas Physical Therapy Association Fall Conference on October 7-8, 2022. The conference and the educational session for the research PT AND CVD IN WOMEN 30 study was a live, in-person event. The presentation took place in a large conference room setting, and approximately 180 were in attendance. Data Data were collected through Qualtrics, an online survey and data collection software platform, including participant demographics, characteristics, and outcome measures. The survey is included in Appendix C. Participant Demographic Data Sex (Male, Female, or Prefer not to answer) Age (years) Participant Characteristics Data Total years as a licensed physical therapy professional Type of physical therapy professional (Physical therapist, Physical therapist assistant) Highest degree held by participant (Associate; Bachelor, Master, Clinical &/or Transitional Doctorate in Physical Therapy, Terminal Academic Doctorate (EdD, PhD, DHSc, DSc)) Any additional professional certifications or credentials, such as ABPTS specialty certifications (Geriatrics, Cardiopulmonary, Orthopedic, Womens Health, Neurology, Sports, Pediatrics, Oncology, Electrophysiology, Wound Management, Sports), certified athletic trainer, Doctor of Chiropractic, Certified Strength & Conditioning Specialist, Certified Exercise Expert for Aging Adults and fill-in-the-blank Other category) Residency participation (Yes, No) o If yes, the subsequent fill-in-the-blank question as to the field of study. PT AND CVD IN WOMEN 31 Type of setting or settings the PT or PTA works in. Check all that apply. (Acute care, Inpatient, Outpatient, Specialty clinic (if yes, specify), Skilled nursing, School-based, Home health, Other (if yes, specify]) o If more than one is selected, branching logic of where they spend the largest majority of their time. Does the PT work in a state with direct access? (Yes, No) o If yes, estimate the weekly percentage of the caseload that is direct access (estimate to the whole number). Employment status (Full-time; Part-time; Per diem; Currently unemployed as a PT/PTA Have you served as a clinical instructor for a PT student in the past 3 years? (Yes; No) Have you served as a clinical instructor for a PTA student in the past 3 years? (Yes; No) Do you have any additional education, aside from physical therapy, in behavior change, or have you attended at least 10 hours of educational classes with a behavioral focus? Topics might include theories of behavior change and coaching strategies to facilitate behavior change (Yes; No; Unsure). Have you, a first-degree relative (mother, father, sibling, child), or a significant other been diagnosed with CVD? (Yes; No; Unsure) Patient/Clientele Characteristics Do you serve only female clientele or work in a female-focused health clinic (Yes; No)? Participant Workload Characteristics On average, how many patients do you treat in an hour? (Estimate to the whole number) PT AND CVD IN WOMEN 32 Outcome Data Domains of the Determinants of Implementation Behavior Questionnaire (DIBQ) were used to measure PTs and PTAs knowledge about CVD screening and education in women and their attitude toward screening and educating their female patients about CVD. One domain, Intent, from the DIBQ was used to measure behavior change from the educational session. Huijg et al. (2014) defined Intent" as a domain as "a conscious decision to perform a behavior or a resolve to act in a certain way" (p. 10). Three items in the survey assessed this domain. An increase in the composite score of Intent was interpreted as demonstrating that participants willingness to perform cardiovascular screening and education changed and improved. Then, the Capability-Opportunity-Motivation-Behavior Model (COM-B) was applied to the DIBQ domains, and Capability, Opportunity, and Motivation were used to determine the variable(s) or combination of variables that best predicted physical therapy professionals behavior of performing cardiovascular screening and education for their female clientele (Schroder et al., 2020). Instruments Determinants of Implementation Behavior Questionnaire The DIBQ was designed to measure the Theoretical Domains Framework (TDF; Huijg et al., 2014). The questionnaire is a 93-item instrument that examines 18 domains (Huijg et al., 2014). A modified version of the DIBQ was reduced to 27 questions across 8 domains. Ris et al. (2021) tailored the DIBQ (DIBQ-t) to a 28-item questionnaire to focus specifically on a low back program. Schroder et al. (2020) then used the DIBQ-t to explore a specific low back program with physiotherapists in Sweden. Then, the DIBQ-t was inserted into the COM-B Model (Schroder et al., 2020). This study utilized a newly modified 27-item version of the DIBQ PT AND CVD IN WOMEN 33 questionnaire that was also applied to the COM-B model. A sample of these components can be found in Appendix D. All DIBQ questions were formatted on a 5-point Likert scale. The 5-point scale went from strongly disagree (1) to strongly agree (5) unless otherwise indicated. Scores of individual DIBQ questions were expressed as whole numbers and treated as continuous data. There were 8 domains calculated with at least two questions in each domain: Knowledge (3 questions), Skills (2 questions), Behavioral Regulation (4), Organization (3), Social Influence (3), Beliefs about Capabilities (3), beliefs about Consequences (6), and Intent (3). Domains were summed to compute scores that ranged from 3 to 30. The total score was converted to a percentage ranging from 0-100. Domains were then evaluated as either moderate-high barrier (025%), weak-moderate barrier (25-50%), weak-moderate facilitator (50-75%), or moderate-high facilitator (75-100%) (Schroder et al., 2020). The DIBQ was initially published in 2014 and is available publicly through open access at http://www.implementationscience.com/content/9/1/33 (Huijg et al., 2014). The validity of the tailored DIBQ (DIBQ-t) has been established (Ris et al., 2021). First, content validity was measured qualitatively, followed quantitatively by two different groups of individuals (n = 4 and n = 16, respectively). The Content Validity Index (CVI) was used to measure the relevance of the included items, with a minimum of 80% (CVI > .80) of the experts agreeing that the questions were relevant or very relevant (Ris et al., 2021). Feasibility and construct validity were also tested using approximately 500 physiotherapists (Ris et al., 2021). Finally, internal construct validity was assessed (Ris et al., 2021). The original DIBQ had internal consistency reliability ranging from .68 to .93 with discriminant validity between PT AND CVD IN WOMEN 34 domains. The only domains highly correlated were knowledge and skills; and skills and social/professional role and identity (Huijg et al., 2014). Procedures Recruitment Participants were recruited from the APTA Kansas Physical Therapy Association Fall Conference attendees and those that specifically attended the educational session, Cardiovascular Disease Risk and Prevention in Women and How Physical Therapy Can Join the Fight. The educational session was scheduled for 2:40 p.m. on Friday, October 7, 2022. Recruitment flyers were placed throughout the common conference areas, with all study information provided. Quarter sheet flyers were color-coded and either provided pretest information or post-session information. These flyers were placed at each conference seat and handed out on Friday, October 7, before the session, or the following day, Saturday, October 8. Samples of the flyers can be found in Appendix E. Announcements were also made about the study between sessions at the conference, and the post-session instructions were provided at the conclusion of the presentation on Friday, October 7. Informed Consent Informed consent was obtained before data collection started. The informed consent document was the first page of the Qualtrics online survey for both the pre-session and postsession survey. A copy of the informed consent can be found in Appendix C. Forced response was required on the informed consent as to whether potential participants agreed to be in the study or declined participation. Those selecting to decline were automatically taken to an exit page of the survey and thanked for their time. All attendees were welcome to attend the educational session, regardless of participation in the study. Those attendees who agreed to PT AND CVD IN WOMEN 35 participate and gave consent proceeded to the next page of the online survey and began the assessment. Data Collection Access to the pre-session survey was available to attendees beginning the morning of October 7, 2022, and remained open until 3:00 p.m. that day. The post-session survey opened at 4:00 p.m. on October 7, 2022, and remained open until Sunday, October 9, at 11:45 p.m. Postsession surveys that were initiated during the open window was not forcibly closed until one week later, Oct 15, 2022. All pre-session and post-session surveys were collected through Qualtrics. Study information and each survey were accessed using a QR code or the direct website address on attendees electronic devices and phones. No personal identification information was collected. For data matching, participants created a unique identifier that included the first four letters of their mothers maiden name and the last four digits of their own telephone number. The pre-session survey collected informed consent, participant demographics, participants clientele characteristics, participant workload characteristics, and the DIBQ. The pre-session survey was time-stamped at completion to ensure participants completed the survey before the intervention began to prevent pre-session data pollution. The post-session survey collected informed consent and included the same DIBQ questions as the pre-session survey. Participants were also asked to provide the same unique identifier they used for the pre-session. Submitted surveys were time-stamped at completion and later matched to pre-session data using the unique identifier. Intervention The intervention was an educational session about CVD in women and the role of physical therapy in actively screening for risk factors and educating about the disease. The PT AND CVD IN WOMEN 36 session was presented by the primary researcher, Dawn Osborne, PT, DPT, and was given in person using a Microsoft PowerPoint presentation and based on transformative learning principles. The session covered the prevalence, history, signs, symptoms, risk factors of CVD and the role of physical therapy. The session was approximately 90 minutes long to fit the requirements of the conferences programming committee (D. Larson, personal communication, June 22, 2021). Session handouts were provided to attendees on the conference webpage (See Appendix F for a sample). Session course objectives were to: 1. Explain the significance of CVD in women. 2. List CVD risk factors, including those that are specific to women. 3. Distinguish the signs and symptoms of a cardiovascular event in females compared to males. 4. Explain the role PT professionals can play in addressing CVD in women. 5. Identify at least three steps PT professionals can do to assess CVD in women. Data Management Pre-session and post-session surveys were downloaded from Qualtrics as an Excel file one week after the end of the conference. The surveys were matched and saved together in one file. Data cleaning and survey calculations for the DIBQ were performed. All electronic data files were stored on a password-protected computer. Statistical Analysis Statistical analysis was performed using IBM SPSS Statistics for Windows, Version 29.0 (IBM Corp., Armonk, NY). Descriptive statistics were used to present participant demographics and characteristics, and outcome results. Nominal data were reported as frequencies and percentages. Normally distributed interval and ratio data were reported as means and standard PT AND CVD IN WOMEN 37 deviations. Non-normally distributed interval and ratio data were also reported as means and standard deviations due to the descriptive analysis resulting in no meaningful difference between means and medians. T-tests are robust enough to manage slight violation of normality and can be used successfully (Rasch et al., 2007). Therefore, paired t-tests compared pre-session and postsession knowledge and attitude scores for data. All comparisons were two-tailed, and a significance level of less than .05 was considered statistically significant. When analyzing splitfile paired samples, effect sizes were based on the assumption of the apriori t-test. Multiple regression with hierarchical variable entry analysis was determined based on the theoretical constructs of the COM-B model (Schroder et al., 2021). Regression was first performed using composite capability, opportunity, and motivation scores. Then, further regression analysis was performed using the subscale of the DIBQ domains. Pearson correlations were also run on DIBQ domain composite scores that were included in the modified survey. Results A total of 40 pre-session surveys were collected. Only eighteen matched sets resulted following the post-session survey and data cleaning and were used for data analysis. Participants were predominantly female (76.5%) and aged 30-39 years old (41.2%). There was an equal percentage (47.1%) of participants with a PT license and a PTA license. Most participants had 21 or more years of professional practice. When participants were asked if they had a first-degree relative or significant other with a cardiovascular disease diagnosis, it was evenly split between yes and no, with 47.1% each. Additional demographics are reported in Table 1. Following the educational session, there was an improvement from pre-session to postsession in each of the eight domains included in the modified DIBQ survey. Seven out of eight PT AND CVD IN WOMEN 38 domains demonstrated statistically significant improvements (See Table 2). The domains were then applied to the COM-B model. The behavior variables of the COM-B model are Capability, Opportunity, and Motivation. The DIBQ domain scores for pre-session, relevant to each behavior variable of the COM-B model, were totaled, as were the post-session scores. The composite scores are presented in Table 3. Knowledge Change from Educational Session Knowledge of cardiovascular screening and education was measured using the TDF domains of Knowledge, Skill, and Behavioral Regulation. These three domains made up the Capability component of the COM-B model. Each of the three domains demonstrated significant improvement, which is seen in Table 2. This correlated to a significant improvement in the COM-B Capability score after the educational session seen in Table 3. The three questions that composed the Knowledge domain each demonstrated an improvement with a significance of at least p < .010 or better. Attitude Change from Educational Session Research questions regarding physical therapy professionals' attitudes towards cardiovascular screening and education were determined using the COM-B behavior model components of Opportunity and Motivation. These components and the TDF domains measured participants beliefs and attitudes toward the performance of cardiovascular screening and education. The Opportunity component included the TDF domains of Organization and Social Influence. The COM-B component of Motivation included the TDF domains of Intent, Beliefs about Capabilities, and Beliefs about Consequences. Table 3 outlines the statistical improvement in the COM-B components over time, and Table 2 breaks down the improvements seen at the TDF domain level. PT AND CVD IN WOMEN 39 The conference conducted anonymous exit surveys at the conclusion of the conference, which was required for continuing education credits. In addition, data were shared with speakers upon request and indicated that 176 conference professionals attended the educational session. In the conference survey, most attendees (63.04%) reported that information given in the educational session would change how they practiced. Behavioral Influences and Change The percentages from each TDF domain were used to predict whether that domain was considered a barrier or a facilitator of behavior change and at what level, from high to weak (Schroder et al., 2020). Figure 1 demonstrates how each domain consistently demonstrated improvement following the educational session. Seven out of eight domains qualified as a weak-moderate facilitator prior to the session with a composite percentage of 50%. Beliefs about consequences (48%) was the only domain to have a composite percentage below 50% and rank as a weak-moderate barrier to behavior. Following the education session, all domains were determined to be facilitators, and five out of the eight domains had demonstrated enough change in their composite score (%) to elevate to the next level or class (for example, weakmoderate facilitator to moderate-high facilitator). Four domains finished as moderate-high facilitators, and the other four finished as weak-moderate facilitators. When investigating the research question of whether the educational session would affect professionals' willingness to perform cardiovascular screening and education and cause a behavior change, the TDF domain of Intent was analyzed. Table 2 shows the significant improvement of this variable following the educational session. PT AND CVD IN WOMEN 40 Predicting Behavior Change Using the COM-B framework, a predictive behavior model was attempted using multiple regression with hierarchical variable entry. Change scores for each TDF domain in the TDF subscale from the pre-session to post-session scores are found in Table 2. Variables were entered into the multiple regression with the Intent change score as the dependent variable and the change scores for each domain according to the behavior model as the independent variables. Due to the small sample size, a limited number of domains were included as independent variables in the hierarchical design at one time. The theory and basis of analysis were that the COM-B model components were entered into the regression to see if there was the ability to predict Intent as the willingness to perform the behavior of cardiovascular screening and education. The domains relevant to each COM-B component were entered into the regression model, and the ANOVA significance was analyzed to determine if the model would predict the behavior. The Capability COM-B component included the domains of Knowledge, Skills, and Behavior Regulation, which demonstrated no ability to predict the behavior. The Opportunity COM-B component included the domains of Social Influence and Organization and also demonstrated no ability to predict the desired behavior. Finally, the Motivation COM-B component included the domains of Beliefs about Consequences and Beliefs about Capabilities to predict the behavior. This was the only regression model that resulted in a significance to predict a willingness to perform the desired behavior. The results from this model are found in Table 4. The first model included Beliefs about Consequences, which was defined as the belief that performing cardiovascular screening and education was going to be worthwhile and was determined to be beneficial towards predicting Intent. This model was significant (F(14) = PT AND CVD IN WOMEN 41 4.46, p = .05, Adjusted R2 = .20). The beta coefficient of "Beliefs about Consequences" was .51, indicating 50% of the variable of "Intent" was determined by participants' "Beliefs about Consequences," or the conviction that performing cardiovascular screening and education was going to be worthwhile. The second model added the variable Beliefs about Capabilities (F(2,14) = 3.31, p = .072, Adjusted R2 = .25). When added to the model, Beliefs about Capabilities negated the significance from Beliefs about Consequences and the model was no longer significant towards predicting the desired behavior. Thus, despite having a belief that conducting screening and education could be beneficial (Beliefs about Consequences), their confidence in their ability to perform the behavior (Beliefs about Capabilities) nullified their intent to incorporate CVD screening and education into their professional practice. Again, the study's limited sample size and lack of power restricted the regression model. Correlations Table 5 displays correlations among the TDF domain post-session composite scores. This relates to a prior study model (Schroder et al., 2020). In this study, these correlations were run to offer another view of the relationships of the DIBQ domains following the educational session. The limited sample size affected how many domain scores could be entered into the regression equation. Past research indicated that several of these domains would affect behavior, so the composite scores were correlated with one another to predict relationships. Two of the eight domains, Organization and Social Influence, had no significant correlations with any other domain. Both domains are part of the Opportunity component in the COM-B model. One other domain, Beliefs about Consequences, part of the Motivation component in the COM-B model, lacked significant correlations with three of the other domains. PT AND CVD IN WOMEN 42 Discussion All eight domains used in the modified version of the DIBQ demonstrated improvement from pre- to post-session, and seven of the eight demonstrated statistically significant differences. These eight domains were used to answer the research questions for this study regarding changes in knowledge, attitudes, and willingness to perform cardiovascular screening and education in female clientele. Knowledge Changes The knowledge domain specifically showed a statistically significant change from pre- to post-sessions. This change supports prevalence, statistics, research, and professional position statements that awareness and educational campaigns are still warranted and needed (AHA, 2019; APTA, 2021b, APTA, 2021c; CDC, 2021; CDC, 2017b; Bairey Merz et al., 2017; Khan et al., 2021; ODPHP, n.d; Virani et al., 2021). More importantly, education still needs to be provided to our healthcare professionals about the prevalence, prevention, and treatment of womens cardiovascular disease (Arena et al., 2018; Frese et al., 2011; Bairey-Merz et al., 2017; Kiamco-Miller & Pinto-Zipp, 2013; Pregler et al., 2009; Rethorn et al., 2021; Scherer et al., 2005; Severin et al., 2019; Severin et al., 2020). Knowledge by Age & Experience Knowledge improved from pre-session to post-session at a statistically significant level. Participants in this study ranged from 1 year to more than 20 years of experience and fell within the range of 25 to 65 years of age. When separated into three age categories (<34 years of age; 35-54 years of age; >55 years of age), each age group demonstrated improvement as well, with <34 years of age and 35-54 years of age at p < .001 and the age group of >55 years of age at p = .02. The oldest age group (>55 years of age) demonstrated a significant level of improvement, PT AND CVD IN WOMEN 43 but not as great as the younger two age groups. Improvement in the oldest age group could be due to the older age group being exposed to more cardiovascular health content due to their own personal risk increasing as they age or that they would probably have family or significant others that are in a higher risk category. Alternatively, older individuals may have demonstrated fewer gains in knowledge due to a fear-based reaction to the information and their own personal risk and limiting absorption and retention of the material (Borawski et al., 1996; McGinty et al., 2012). Details can be found in Table 6. Table 6 also outlines the analysis of years of professional practice compared to the knowledge domain. All professional experience groups (<10 years experience; 11-20 years experience; >21 years experience) demonstrated improvements in their score from pre- to postsession. The new (<10 years experience) and seasoned (>21 years) professional groups demonstrated statistically significant changes at p < .001 and p < .01, respectively. The experienced professionals with 11-20 years of licensed experience did not have a statistically significant change in knowledge despite demonstrating improvements (p = .08). These results are interpreted cautiously due to the small sample size, but the power for the analysis was moderate. Seasoned professionals demonstrated improvement in knowledge following the educational session. Therefore, one could hypothesize that an older professional, with increased years of experience, would have increased knowledge of CVD due to being in an age category with elevated risk for CVD themselves or their loved ones. It could also be hypothesized that professionals with fewer years of experience may have been exposed to additional educational topics covered in newer curricula that may cover preventive health education and cardiovascular topics. However, all age categories demonstrated improvement in knowledge following the educational session. The fact that all age groups PT AND CVD IN WOMEN 44 demonstrated improvements supports the research that continuing education is important for the maintenance and expansion of professional knowledge (Arena & Peterson, 2020; Kiamco-Miller & Pinto-Zipp, 2013; Pregler et al., 2009; Severin et al., 2019; Young et al., 2020). The educational session intervention in this study was 1.5 hours long, a relatively short period of time for such an extensive public health issue with many variables, but even in this short period of time, knowledge improved in all domains. Attitude Changes Attitudes towards screening and education were also measured by the domains of the DIBQ in the modified survey. It was measured across multiple domains, including Social Influence, Organization, Beliefs about Consequences, Beliefs about Capabilities, and Intent. These were the Opportunity and Motivation components of the COM-B behavior model. Attitudes improved in this study following the intervention. The improvement in attitude and related domains mirrors previous research related to PT education and blood pressure assessment following an education initiative on the specific topic and practice of monitoring blood pressure (Arena & Peterson, 2020). In addition, Arena and Peterson (2020) conducted an observational study with outpatient PTs to measure blood pressure screening and assessment as a component of the larger umbrella of cardiovascular screening. The study offered an in-person and remote option for a one-hour educational session, as opposed to the current study, which had a 1.5-hour, in-person educational session and included professionals in any PT clinical setting. Despite these slight variations, both studies were consistent in demonstrating positive attitude changes following educational sessions on cardiovascular topics for physical therapy. Attendees of the educational session for this study had the opportunity to complete an anonymous post-conference survey for continuing education credits through the professional PT AND CVD IN WOMEN 45 organization (n = 173). Over 60% of those respondents reported that the educational session would change the way they practiced PT. This statistic is encouraging and supports past research citing the importance and influence of continuing education topics on practice behaviors and standards in PT (Arena & Peterson, 2020; Severin et al., 2019). Research also has indicated that there can be many factors that affect the behaviors of practicing professionals, and sustaining behavior changes over time needs to be considered (Schroder et al., 2020). Past research has also discussed the need for further continuing education opportunities in cardiovascular topics (Severin et al., 2019). Limited research is present on cardiovascular continuing education that is appropriate for all PT clinical settings and discusses public health and preventive health issues. These findings, in conjunction with a majority of attendees declaring professional practice changes following the educational session support the need for expansion on this topic and these types of continuing education courses for PT professionals. Attitudes Considering Opportunity of Behavior The domains of Social Influence and Organization were the domains that were included in the behavior model variable of Opportunity. Both of these domains demonstrated improvement from pre- to post-session surveys following the educational intervention. However, Social Influence did not demonstrate an improvement that was statistically significant. This varies from previous research that demonstrated social influence to have a significant impact on nurses behavior related to CVD screening and education with their patients (Kiamco-Millman & Zipp, 2013). When examined in relation to nursing behavior, components like social influence were reported as being significant to behavior change, along with other factors that would be included in the Opportunity behavior model related to organizational policies and expectations, such as management and colleague opinions, attitudes, and behaviors (Kiamco-Millman & Zipp, PT AND CVD IN WOMEN 46 2013). However, in the current study, social influence was found to demonstrate the least amount of improvement from pre- to post-session. When entered into the regression model as the independent variable and Intent, or willingness to perform the behavior, was entered as the dependent variable, it proved to be non-significant with a value of p = .064. Another hypothesis for the difference between this study and the previously mentioned nursing research is that this study looked specifically at a limited time frame before and after the intervention of an education session, whereas the nursing study measured intent to educate patients during active professional practices. Since this current study did not measure attitudes and behavior practices past the time frame of attending the conference and during active practice, the consideration of others policies and influences may have been minimized or not considered by participants. Also, the variations between nursing and physical therapy practice should be considered. There are similarities in their professional practices in that both may work in various acute, inpatient, and outpatient settings. They both also work with referrals and physician orders. Some states, such as Kansas, where the current study took place, grant PTs direct access practice to patients; however, physicians will be included in the continued plan of care for patients even if they enter physical therapy care through direct access. The Kiamco-Millman and Zipp study (2013) included only registered nurses in their cross-sectional study, who typically have less independence in practice from physicians than PTs. These factors may have also influenced how PTs rated the influence of social and organizational expectations towards the behavior of screening and education. PTAs, compared to PTs, may have had increased consideration towards these domains due to their practice being supervised by PTs. When the domain Social Influence was compared from pre- to post-session for PTs and PTAs as separate groups, the PTs had no change in the mean response. PTAs did demonstrate a change and improvement in their PT AND CVD IN WOMEN 47 mean response but did not demonstrate a relationship with any significance in the domain of Social Influence (p = .413), indicating that they may have considered their colleagues influence and opinions more than PTs but not in any significant amount. Table 6 outlines these findings. The educational session did include information concerning the policies of the Kansas State Practice Act for Physical Therapy, which is the governing practice act for the participants at the conference. It also highlighted the attitudes of the professional organization, with a discussion of position statements made by the APTA regarding patient education, public health, and preventive screening (APTA, 2019). The facts provided during the educational session communicated support and opportunity for professionals to participate in screening and education. They still may not have encouraged reflection of how individuals professional practices may be affected on a day-to-day basis due to company policy, supplies, or colleague attitudes and practices. Attitudes Considering Motivation of Behavior The behavior model variable of Motivation was particularly important when answering research questions about attitudes and willingness toward behavior change. The DIBQ domains of Intent, Belief of Capabilities, and Belief of Consequences were all included under the umbrella of Motivation. Each of these domains saw improvement from pre- to post-session influence with statistical significance. The Beliefs about Capabilities domain is defined as the acceptance that a person can put an ability to constructive use (Huijg et al., 2014). The Beliefs about Consequences domain is defined as the belief that behavior will result in a particular outcome (Huijg et al., 2014). Both of these domains are related to an increase in knowledge following education sessions (Arena & PT AND CVD IN WOMEN 48 Peterson, 2020). However, these domains go beyond awareness of a topic and focus on confidence in the information and understanding the purpose and consequences of enacting that knowledge. There were some items in the survey by Arena and Peterson (2020) that measured attitudes in regard to confidence, but there were no questions regarding the consequences or quality of care that was perceived from the behavior researched. Predicting Behavior Change The domain of Intent was used to analyze professionals' willingness to perform CVD screening and education with their female clientele. This domain demonstrated statistically significant improvements from pre- to post-session surveys. It was previously discussed that this domain was used as the dependent variable in a regression model to attempt to make a predictive behavior model. Beliefs about Consequences entered as the sole independent variable to predict Intent demonstrated statistical significance at p < .05. Due to the sample size of the study, it cannot be definitively said that Beliefs about Consequences is the most important predictor variable due to the limited sample size and lack of power in the study. However, it does indicate that the Beliefs about Consequences domain has an important role to play in continuing education design and should be considered when developing materials and sessions for physical therapy professionals. This finding supports previous research that professionals feeling confident and capable regarding cardiovascular screening practices does not necessarily equate to performance of the task (Albarrati, 2019; Arena et al., 2018; Frese et al., 2002; Rethorn et al., 2021; Scherer et al., 2005; Severin et al., 2019). Affecting PT and PTA perception and value of the desired task, and the consequences that could result from performing or not performing the task, may be more influential towards performing the desired behavior. PT AND CVD IN WOMEN 49 Another consideration of the significance of changes and influence of the domain Beliefs about Consequences is the design of the educational session. As the intervention in this study, the educational session was designed based on the adult learning theory of transformative learning principles. Information was presented in a manner to increase relatability, to resonate with the professionals individual lives and experiences, and not simply to view the information as beneficial for their patients and clientele. The focus on these types of principles for the design of the educational system may have influenced the significance of the domain Beliefs about Consequences. The focus on these components in the educational system may also have contributed to why Beliefs about Capabilities limited the predictive significance of behavior change. Although this domain score improved from pre- to post-session, it may not have had an adequate focus to improve professionals confidence and constructive use of their personal skills. Limitations The sample size was a limitation of this study. A moderate power effect had been calculated as needing 105 participants. Several additional surveys were completed for both the pre- and post-session surveys; however, only 16 matching data sets were produced. Nevertheless, there were no statistical differences when the matched data set participants were compared to other survey participants who did not complete both sets of surveys. The lack of differences adds confidence that the trends observed with changes following the educational session would have continued. The number of responses limited the ability to create a predictive behavior model and determine which variables of the behavior model and, ultimately, which domains of the DIBQ were the most influential in stimulating a professionals behavior change. This study design was created to take-into-account intent or desire to change behavior because all data were collected in a small timeframe limited by the confines of the conference. PT AND CVD IN WOMEN 50 No data were collected on whether any changes were actually implemented when professionals returned to patient care. Only the question of intent was asked regarding behavior change and whether the information would change how attendees practice professionally. Conclusion Cardiovascular disease for women is a public health concern, and lifestyle modification and early screening could have tremendous effects on reversing its projected path and impact (CDC, 2017b; Garcia et al., 2016). Additional healthcare professionals working on screening and educating women and fellow professionals could positively affect change. Physical therapy professionals have the education, skills, and opportunity to participate in screening and preventive health education for CVD. Previous physical therapy research has not examined CVD screening specific to women and what the knowledge base or attitudes towards these skills may be amongst professionals. This study has taken a step toward filling that gap and has demonstrated the importance of including this topic in continuing education opportunities for the profession. It supports previous research findings that continuing education opportunities are key for the expansion of professional knowledge and increasing the probability of PTs performing cardiovascular screening (Arena et al., 2018; Arena & Peterson, 2020; Severin et al., 2019). This study and the educational session provided support and encouraged further research to explore this area of practice and involvement in the physical therapy profession. Future Research Future studies should focus on additional recruitment to increase sample size, assess screening and education behaviors over time, and examine facilitators and barriers to cardiovascular screening and preventive patient education specific to physical therapy. Another study with additional participants to reach adequate power to create a predictive behavior model PT AND CVD IN WOMEN 51 would be valuable to assist in designing and implementing effective continuing education for physical therapy professionals. Future research could focus on the educational design and the effectiveness of the continuing education session. Research could ask questions about the type of adult learning theory applied, as well as the time spent in the educational session. Future research may also consider how the information on cardiovascular screening and patient education is presented to and digested by licensed professionals as continuing education versus entry-level education to students. Specifically, the research could consider if the Beliefs about Consequences domain remains relevant and significant with entry-level education as continuing education. Entry-level education may need to focus more on the Capability variable of behavior, with the domains of Knowledge and Skills'' included as determinants of behavior. These domains specifically may have particular relevance to students in entry-level education and carry more weight, and have more influence over their behavior over a licensed and practicing PT professional. By definition, the Knowledge and Skills domains are focused on awareness, exposure, practice, and ability (Huijg et al., 2014), and entry-level students are learning information for the first time or concepts are more foreign. These domains saw improvement, and at a statistically significant level, from pre- to post-educational sessions, supporting the need for continuing education as professionals. The original DIBQ covers 18 domains in 93 statements or questions (Huijg et al., 2014). The current study limited the number of survey questions for efficiency and manageability with the study setting and time limitations; however, there are many more domains that could be explored in relation to professional behavior implementation. Some of the domains would be PT AND CVD IN WOMEN 52 very interesting to consider for those professionals that are actively implementing the desired behavior. Long-term, cross-sectional studies could be conducted in the physical therapy profession to explore true behavior change and assess barriers and facilitators to implementing the desired behavior. Additional research could branch into qualitative studies to explore attitudes towards the physical therapy profession becoming more involved in preventive health and screening. 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Journal of Statistical Planning and Inference, 137, 2706-2720. Rethorn, Z., Covington, J., Cook, C., & Bezner, J. R., (2021). Physical activity promotion attitudes and practices among outpatient physical therapists: Results of a national survey. Journal of Geriatric Physical Therapy, 44(10), 25-34. https://doi.org/10.1519/JPT.0000000000000289 Ris, I., Schroder, K., Kongsted, A., Abbott, A., Nilsen, P. Hartvigsen, J., & Oberg, B. (2021). Adapting the determinants of implementation behavior questionnaire to evaluate implementation of a structure low back pain proramme using mixed-methods. Health Science Reports, 4(2), Article e266. https://doi.org/10.1002/hsr2.266 Robinson, J. (2017). What women (and clinicians) dont know hurts them. Journal of the American College of Cardiology, 70(2), 133-135. https://doi.org/10.1016/j.jacc.2017.05.037 Rodriguez, F. Olufade, T. O., Ramey, D. R., Friedman, H. S., Navaratnam, P., Heithoff, K., & Foody, J. M. (2016). Gender disparities in lipid-lowering therapy in cardiovascular PT AND CVD IN WOMEN 62 disease: Insights from a managed care population. Journal of Womens Health, 25(7), 697-706. https://doi.org/10.1089/jwh.2015.5282 Ross, M., Zhou, K., Perilli, A., Gorder, N., Pace, A., Melendez, E., Doherty, D. Hornung, M., & Carrol, W. (2019). Screening for cardiovascular disease risk factors in a physical therapist wound care practice: A retrospective, observational study. Wound Management and Prevention, 65(8), 20-28. https://doi.org/10.25270/wmp.2019.8.2028 Safford, M. M., Gamboa, C. M., Durant, R. W., Brown, T. M., Glasser, S. P., Shikany, J. M., Zweifler, R. M., Howard, G., & Muntner, P. (2015). Race-sex differences in the management of hyperlipidemia: The reasons for geographic and racial differences in stroke study. American Journal of Preventive Medicine, 48(5), 520-527. https://doi.org/10.1016/j.amepre.2014.10.025 Scherer, S. (2009). Clinical commentary addressing cardiovascular risk as part of physical therapist practice-What about practice recommendations for physical therapists? Cardiopulmonary Physical Therapy Journal, 20(3), 27-29. https://doi.org/10.1097/01823246-200920030-00005 Scherer, S. A., Noteboom, J. T., & Flynn, T. W. (2005). Cardiovascular assessment in the orthopaedic practice setting. Journal of Orthopaedic & Sports Physical Therapy, 35(11), 730-737. https://doi.org/10.2519/jospt.2005.2102 Schroder, K., Ober, B., Enthoven, P., Kongsted, A., & Abbott, A. (2020). Confidence, attitudes, beliefs, and determinants of implementation behaviours among physiotherapists towards clinical management of low back pain before and after implementation of the BetterBack model of care. BMC Health Services Research,20, Article 443. https://doi.org/10.1186/s12913-020-05197-3 PT AND CVD IN WOMEN 63 Severin, R., Wang, E., Wielechowski, A., & Phillips, S. A. (2019). Outpatient physical therapist attitudes toward and behaviors in cardiovascular disease screening: A national survey. Physical Therapy, 99(7), 833848. https://doi.org/10.1093/ptj/pzz042 Severin, R., Sabbahi, A., Albarrati, A., Phillips, S. A, & Arena, S. (2020). Blood pressure screening by outpatient physical therapists: A call to action and clinical recommendations. Physical Therapy, 100(6), 1008-1019. https://doi.org/10.1093/ptj/pzaa034 Sniderman, A. D., Thanassoulis, G., Williams, K., & Pencina, M. (2016). Risk of premature cardiovascular disease vs the number of premature cardiovascular events. Journal of the American Medical Association Cardiology, 4(1), 492-494. https://doi.org/10.1001/jamacardio.2016.0991 Van Zant, R. S., Cape, K. J., Roach, K., & Sweeney, J. (2013). Physical therapists perceptions of knowledge and clinical behavior regarding cardiovascular disease prevention. Cardiopulmonary Physical Therapy Journal, 24(2), 1826. https://doi.org/10.1097/01823246-201324020-00004 Virani, S. S., Alonso, A., Aparicio, H. J., Benjamin, E. J., Bittencourt, M. S., Callaway, C. W., Carson, A. P., Chamberlain, A. M., Cheng, S., Delling, F. N., Elkind, M. S. V., Evenson, K. R., Ferguson, J. F., Gupta, D. K., Khan, S. S., Kissela, B. M., Knutson, K. L., Lee, C. D., Lewis, T. T., Liu, J., Loop, M. S& Tsao, C. (2021). Heart disease and stroke statistics-2021 update. Circulation, 143(8), e254-e743. https://doi.org/10.1161/CIR.0000000000000950 Wenger, N. K., Arnold, A., Bairey Merz, C. N., Cooper-DeHoff, R. M., Ferdinand, K. C., Fleg, J., Gulati, M., Isiadinso, I., Itchhaporia, D., Light-McGroary, K.A., Lindley, K. J., PT AND CVD IN WOMEN 64 Mieres, J. H., Rosser, M. L., Saade, G. R., Walsh, M. N., & Pepine, C. J. (2018). Hypertension across a womans life cycle. Journal of the American College of Cardiology, 71(16), 1797-1813. https://doi.org/10.1016/j.jacc.2018.02.033 Young, B. A., Ross, M. D., Heick, J., Greathouse, D. G., Green Guerrero, H., & Boissonnault, W. G. (2020). Exploration of medical screening and differential diagnosis instructional methods and faculty perceptions in physical therapist educational programs. Journal of Allied Health, 49(2), e89e97. Zhang, Y. (2010). Cardiovascular diseases in American women. Nutrition, Metabolism, and Cardiovascular Diseases, 20(6), 386-393. https://doi.org/10.1016/j.numecd.2010.02.001 PT AND CVD IN WOMEN 65 Table 1 Participant Demographics Characteristics n % Male 4 23.5 Female 13 76.5 < 30 years 2 11.8 30-39 years 7 41.2 40-49 years 3 17.6 50-59 years 2 11.8 60+ years 3 17.6 PT 8 47.1 PTA 8 47.1 Both 1 5.9 Gender Age a License type Years of professional practice < 5 years 4 23.5 5-10 years 3 17.6 11-20 years 3 17.6 21+ years 7 41.2 2 11.8 Exclusive female practice Yes PT AND CVD IN WOMEN No 66 15 88.2 <30 minutes 1 5.9 30 minutes 4 23.5 45 minutes 9 52.9 60 minutes 2 11.8 Missing data 1 5.9 Average treatment time First degree relative or significant other with CVD diagnosis Yes 8 47.1 No 8 47.1 Unsure 1 5.9 Note. PT = physical therapist; PTA = physical therapist assistant; CVD = cardiovascular disease. a Missing data in age was imputed by using reported years of practice and comparing quartiles from years of practice and age. There were 6 missing cases of age. PT AND CVD IN WOMEN 67 Table 2 Comparison of Mean DIBQ Domain Scores from Pre-Session and Post-Session Surveys Pre-Session Composite score (average) Post-Session Change Score M SD M SD Knowledge a 3.02 0.79 4.22 0.47 0.80 *** Skills a 3.06 1.03 4.11 0.65 1.05 *** Behavioral regulation a 2.58 1.02 3.64 0.67 1.06 *** Organization a 3.17 1.14 3.66 0.88 0.49 ** Social influence b 3.04 0.61 3.25 0.70 0.21 Intent b 3.04 1.10 3.86 1.00 0.82 *** Beliefs about capabilities a 3.04 0.74 3.87 0.78 0.83 *** Beliefs about consequences b 3.10 0.40 3.55 0.50 0.45 ** Note. a n = 18. b n = 17. * p < .05. ** p < .01. *** p < .001 (All were two-tailed tests). PT AND CVD IN WOMEN 68 Table 3 Comparison of Mean Capability, Opportunity, Motivation Behavior Model Composite Scores from Pre-Session and Post-Session Surveys Pre-Session Composite score (average) Post-Session Change Score M SD M SD Capability a 8.66 2.61 11.97 1.59 3.31 *** Opportunity b 6.14 1.61 6.90 1.38 0.76 ** Motivation c 9.18 1.84 11.24 2.09 2.06 *** Note. a Made up of the DIBQ domains Knowledge, Skills, and Behavior Regulation with n = 18. b Made up of the DIBQ domains Organization and Social Influence with n = 17. c Made up of the DIBQ domains Intent, Beliefs about Capabilities, and Beliefs about Consequences with n = 17. * p < .05. ** p < .01. *** p < .001 (All were two-tailed tests). PT AND CVD IN WOMEN 69 Table 4 Regression Analysis Results Predicting Intent to Change Behavior by Changes in DIBQ Domains Using Hierarchical Variable Entry t p .51* 2.14 .05* -0.01 1.33 Beliefs about Consequences 0.48 2.04 .06 -0.04 1.28 Beliefs about Capabilities 0.31 1.34 .21 -0.34 1.41 Covariates 95% CI Interval Model 1 Beliefs about Consequences Model 2 Note. CI = confidence interval. n = 15. * p < .05. ** p < .01, *** p < .001, all were two-tailed tests. PT AND CVD IN WOMEN 70 Table 5 Pearson Correlations Among DIBQ Domain Composite Scores Post-Session Survey Domain Composite Score N M SD 1 2 3 4 5 6 7 1. Knowledge 16 12.56 1.36 1.00 2. Skills 16 8.25 1.34 .57* 1.00 3. Behavior regulation 16 14.69 2.82 .72** .76** 1.00 4. Organization 16 10.88 2.75 -.09 -.05 .24 1.00 5. Social influence 15 9.67 2.16 .23 .13 .42 .43 1.00 6. Intent 16 12.00 2.56 .59* .78** .71** .17 .38 1.00 16 11.50 2.42 .56* .82** .72** .10 .34 .87** 1.00 16 16.44 2.39 .43 .65** .70** .49 .37 .76** .74** 8 7. Beliefs about capabilities 8. Beliefs about consequences Note. * p < .05. ** p < .01. *** p < .001, all were two-tailed tests. 1.00 PT AND CVD IN WOMEN 71 Table 6 Paired t-test Comparison of DIBQ Domains versus Demographic Variables Domain Social Influence Variable PT a PTA Knowledge Knowledge Young Middle Older New Experienced Seasoned Adult d Adult e Adult f Professional f Professional g Professional h b Mean (SD) Pre-Session 3.17 (0.53) 2.95 (0.78) 2.71 (0.59) 2.78 (0.86) 3.75 (0.63) 2.90 (0.53) 2.22 (0.69) 3.38 (0.87) Post-Session 3.17 (0.53) 3.14 (0.88) 4.23 (0.37) 4.06 (0.61) 4.25 (0.32) 4.33 (0.47) 3.89 (0.38) 4.14 (0.42) p 1.00 .413 <.001 . 003 .058 <.001 Note. PT = physical therapist; PTA = physical therapist assistant a (n = 8). b (n = 7). c Young Adult defined as ages 18-34 with n = 7. d Middle Adult defined as age 34-54 years with n = 6. e Older Adult defined as age 55+ years with n = 3. f New Professional defined as <10 years of professionally licensed experience with n = 7. g Experienced Professional defined as 11-20 years of professionally licensed experience with n = 3. h Seasoned Professional defined as >21 years of professionally licensed experience with n = 7. .082 .007 PT AND CVD IN WOMEN 72 Figure 1 DIBQ Domain Composite Pre-Session and Post-Session Scores as Effecting Change in Behavior Pre-Session 84 83 73 73 Post-Session 80 64 77 55 59 61 51 63 60 62 59 48 PT AND CVD IN WOMEN 73 Appendix A: Informed Consent Informed Consent Pre-Session Informed Consent University of Indianapolis Doctor of Health Science Program CONSENT TO PARTICIPATE IN RESEARCH STUDY Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease and Health in Women *This is a dissertation project for the DHSc program at the University of Indianapolis Study Investigator (student): Dawn Osborne, PT, DPT Email: osborned@uindy.edu Committee Chair: Elizabeth Moore, PhD from the Interprofessional Health and Aging Studies Department at the University of Indianapolis Eligible Participants: A licensed physical therapist or physical therapy assistant in the U.S. with a minimum of one year of professional experience. Your participation in this research study is voluntary and you may withdraw from the survey at any time, refuse to answer any question, and/or contact the primary investigator to remove your survey from the data. Why is this study being done? The proposed study will provide education on a significant public health issue and investigate determinants of behavior of physical therapy professionals regarding their willingness to engage in screening, prevention, and health promotion patient education. Physical therapy professionals have expertise pertinent to CVD prevention and education, and typically have significant contact time with their clients, offering them a unique opportunity to screen and educate. The study will contribute to the information on an important public health issue in which the physical therapy profession can make a positive contribution. What will happen if I take part in this research study? PT AND CVD IN WOMEN 74 If you volunteer to participate in this study, the researcher will ask you to do the following: 1. take an electronic survey on your phone, tablet, or computer prior to an educational session. No personal information (such as name or email) is collected or linked to your responses. 2. attend a coinciding educational session titled, Cardiovascular Disease in Women and How Physical Therapy Can Join the Fight. 3. take an electronic survey on your phone, tablet, or computer following the educational session. 4. in order for your data to be included in the study, both the pre and post survey will need to be completed. 5. there will be an optional entry for a drawing for one of ten, $10 Amazon gift cards for participating in the pre and post-session surveys. This survey should take approximately 10-15 minutes to complete. There are no risks involved with the participation of this study beyond normal daily activities or risk. The results of the research will help design continuing education materials and provide information to physical therapy professionals concerning the knowledge and attitudes of the profession towards women's cardiovascular disease. Please select one of the options below to indicate your consent to participate in the research or to exit the survey. Concerning my participation in this study and survey, I wish to proceed to the survey. I wish to exit and not participate in the survey. Post-Session Informed Consent University of Indianapolis Doctor of Health Science Program CONSENT TO PARTICIPATE IN RESEARCH STUDY PT AND CVD IN WOMEN 75 Physical Therapists and Physical Therapist Assistants Knowledge and Attitudes of Cardiovascular Disease and Health in Women *This is a dissertation project for the DHSc program at the University of Indianapolis Study Investigator (student): Dawn Osborne, PT, DPT Email: osborned@uindy.edu Committee Chair: Elizabeth Moore, PhD from the Interprofessional Health and Aging Studies Department at the University of Indianapolis Eligible Participants: A licensed physical therapist or physical therapy assistant in the U.S. with a minimum of one year of professional experience. Your participation in this research study is voluntary and you may withdraw from the survey at any time, refuse to answer any question, and/or contact the primary investigator to remove your survey from the data. Why is this study being done? The proposed study will provide education on a significant public health issue and investigate determinants of behavior of physical therapy professionals regarding their willingness to engage in screening, prevention, and health promotion patient education. Physical therapy professionals have expertise pertinent to CVD prevention and education, and typically have significant contact time with their clients, offering them a unique opportunity to screen and educate. The study will contribute to the information on an important public health issue in which the physical therapy profession can make a positive contribution. What will happen if I take part in this research study? If you volunteer to participate in this study, the researcher will ask you to do the following: 1. take an electronic survey on your phone, tablet, or computer prior to an educational session. No personal information (such as name or email) is collected or linked to your responses. 2. attend a coinciding educational session titled, Cardiovascular Disease in Women and How Physical Therapy Can Join the Fight. 3. take an electronic survey on your phone, tablet, or computer following the PT AND CVD IN WOMEN 76 educational session. 4. in order for your data to be included in the study, both the pre and post survey will need to be completed. 5. there will be an optional entry for a drawing for to receive one of ten, $10.00 Amazon gift cards for participating in the study at then end of this survey. This is the follow-up survey to the educational session. This survey is shorter than the first survey and should take approximately 5-10 minutes to complete. There are no risks involved with the participation of this study beyond normal daily activities or risk. The results of the research will help design continuing education materials and provide information to physical therapy professionals concerning the knowledge and attitudes of the profession towards women's cardiovascular disease. Please select one of the options below to indicate your consent to participate in the research or to exit the survey. Concerning my participation in this study and survey, I wish to proceed to the survey. I wish to exit and not participate in the survey. PT AND CVD IN WOMEN Appendix B: Pre-Session Survey Sample 77 PT AND CVD IN WOMEN 78 PT AND CVD IN WOMEN 79 PT AND CVD IN WOMEN 80 PT AND CVD IN WOMEN 81 PT AND CVD IN WOMEN 82 PT AND CVD IN WOMEN 83 PT AND CVD IN WOMEN 84 PT AND CVD IN WOMEN 85 PT AND CVD IN WOMEN 86 PT AND CVD IN WOMEN 87 PT AND CVD IN WOMEN 88 PT AND CVD IN WOMEN 89 PT AND CVD IN WOMEN 90 PT AND CVD IN WOMEN 91 PT AND CVD IN WOMEN 92 PT AND CVD IN WOMEN 93 PT AND CVD IN WOMEN 94 PT AND CVD IN WOMEN 95 PT AND CVD IN WOMEN 96 PT AND CVD IN WOMEN 97 PT AND CVD IN WOMEN Appendix C: Post-Session Survey Sample 98 PT AND CVD IN WOMEN 99 PT AND CVD IN WOMEN 100 PT AND CVD IN WOMEN 101 PT AND CVD IN WOMEN 102 PT AND CVD IN WOMEN 103 PT AND CVD IN WOMEN 104 PT AND CVD IN WOMEN 105 PT AND CVD IN WOMEN 106 PT AND CVD IN WOMEN 107 PT AND CVD IN WOMEN 108 PT AND CVD IN WOMEN 109 PT AND CVD IN WOMEN 110 PT AND CVD IN WOMEN 111 Appendix D: Application of COM-B Behavior Model Components, DIBQ Domains, & Survey Statements PT AND CVD IN WOMEN 112 Survey Statements with DIBQ Domain and COM-B Behavior Model Component Behavior Model DIBQ Domain Statements Component I know how to deliver cardiovascular screening and education. My role in cardiovascular screening and Knowledge education is clearly defined for me. With regard to cardiovascular screening and education, I know what my responsibilities are. I have the skills to deliver cardiovascular screening and education. Skills I am practiced to deliver cardiovascular screening and education. Capability I have a clear plan of how I will deliver cardiovascular screening & education. I have a clear plan under what circumstances I will deliver cardiovascular screening & Behavioral education. regulation I have a clear plan with regard to delivering cardiovascular screening & education when there is little time. I have a clear plan with regard to delivering cardiovascular screening & education when PT AND CVD IN WOMEN 113 other professionals with whom I work do not do this. In the organization I work, all necessary resources are available to deliver cardiovascular screening & education. The management of the organization I work in Organization is willing to listen to my problems with delivering cardiovascular screening education. The management of the organization I work in is helpful with delivering cardiovascular screening & education. Professionals with whom I deliver Opportunity cardiovascular screening & education think I should deliver cardiovascular screening & education. Professionals with who I deliver cardiovascular Social influence screening & education deliver cardiovascular screening & education. Other professionals who work with cardiovascular screening & education deliver cardiovascular screening & education. Beliefs about I am confident that I can deliver cardiovascular capabilities screening & education. Motivation PT AND CVD IN WOMEN 114 I am confident that I can deliver cardiovascular screening & education when other professionals with who I deliver cardiovascular screening & education do not do this. For me, delivering cardiovascular screening and education is (very difficult-very easy). For me, delivering cardiovascular screening and education is (not worthwhile at all-very worthwhile). If I deliver cardiovascular screening & education, it will be most effective. If I deliver cardiovascular screening & education, this will strengthen the collaboration Beliefs about with other professionals. consequences If I deliver cardiovascular screening & education, it will help participants to be more physically active & pursue better health. When I deliver cardiovascular screening & education, I get financial reimbursement. When I deliver cardiovascular screening & education, I get recognition from a work context. PT AND CVD IN WOMEN 115 I intend to deliver cardiovascular screening & education in the next three months. I will definitely deliver cardiovascular Intent screening & education in the next three months. How strong is your intention to deliver cardiovascular screening & education in the next 3 months (no intention very strong intention). PT AND CVD IN WOMEN Appendix E: Sample Educational Flyers 116 PT AND CVD IN WOMEN Flyer for Communal Areas 117 PT AND CVD IN WOMEN Flyers for Individual Hand-outs 118 PT AND CVD IN WOMEN 119 PT AND CVD IN WOMEN Appendix F: Educational Session Handouts 120 PT AND CVD IN WOMEN 121 Cardiovascular Disease Risk and Prevention in Women and How Physical Therapy Can Join the Fight APTA Kansas Fall Conference, 2022 Dawn Osborne, PT, DPT Oct 7, 2022 Course Objectives: 1. Explain the significance of cardiovascular disease in women 2. List cardiovascular risk factors, including those that are specific for women 3. Distinguish the signs and symptoms of a cardiovascular event in females compared to males 4. Explain the role that PT professionals can play in addressing cardiovascular disease in women 5. Identify at least 3 steps you can take to assess cardiovascular disease INTRODUCTION Cardiovascular disease (CVD) is the: Leading cause of death globally1 Leading cause of death in the United States2 Leading cause of death for both men & women3,4 Two types of CVD rank in the Top 5 leading causes of death in the U.S.Heart disease (#1) & stroke (#5).2 There is 1 death every 34 sec in the US from CVD.5 It can affect anyone, but there are grave health disparities regarding the awareness, diagnosis, and treatment of cardiovascular disease amongst minority groups and in women6,7,8 STUNNING STATISTICS Risk Fifty percent of women will be affected by heart disease 9 Fifty percent of women who suffer a heart attack will have no typical symptoms9,10 1 in 3 women will die from heart disease9 1 woman every 80 sec dies from 9,10 PT AND CVD IN WOMEN 122 64% of coronary heart disease deaths in women will have no prior symptoms9,10 There are more female deaths due to heart disease than all cancers combined.9 First cardiac events are more severe and deadly for women compared to men.13 CVD mortality is increasing for women in mid-life (35-54 years)14 At 50 years old, a womans lifetime risk of CVD is approximately 40%14 10x more women will die from heart disease than breast cancer11,12 Knowledge & Awareness Only about half of women recognize heart disease as their number one health threat.4,15 Women under-estimate their personal risk level for heart disease.4,15,16 82% of women surveyed recognized chest tightness as a symptom but prodromal-type symptoms quickly fell below 50%15 Women are relying on health care professionals to let them know if they are at risk for heart disease15 49% of primary care physicians (PCPs) surveyed nationally felt their medical education prepared them for assessing female CVD risk, while only 22% declared feeling extremely well-prepared15 Intervention & Care 50% more likely to be given the wrong diagnosis following a heart attack10 9x more likely to experience stress-induced cardiomyopathy18 Women have been found to receive less prescriptions (aspirin, statins, BP meds)14,18-20 Women receive less procedural interventions13,20 Women are less likely to receive CPR from a bystander 10 Women are slower to present to hospital with symptoms20,21 Only 35% of the physicians (PCPs & Cardiologists) ranked heart health as the number one concern for their female patients.15 Only 16% of PCPs surveyed were performing complete risk assessments as recommended by the American College of Cardiology and the American Heart Association.15 Only about of PCPs surveyed stated they discussed heart health with new patients15 MY PROPOSAL S-E-E-R: Screen - Educate - Empower - Refer Igniting Cardiovascular Change for Women Through PT PT AND CVD IN WOMEN To work within the parameters but to the fullest extent of our license To become active in preventative health practices Screen Have working knowledge of signs & symptoms, as well as risk factors for heart disease Reviewing medical history - considering risk factors Assessing physical activity levels & readiness22,23 Assessing blood pressure & vital signs24,25 Differential diagnosis with patient complaints Using calculations like Karvonen, Heart Rate Response & outcomes like Rating of Perceived Exertion (RPE)with treatments for objective data & to show skilled therapy Educate Ourselves Clients Community Fellow physical therapy professionals Fellow healthcare professionals Referral sources Empower Clients to make health changes To quit smoking To be physically active Each other to participate in screening and prevention health Women to ask questions Refer Reciprocating relationships with referral sources Documentation includes screening results FAVORITE & POWERFUL ARTICLES* *(These articles are also in the presentation references but are merely favorites) Specific to Womens CVD Agarwala, A. Michos, E. D., Samad, Z., Ballantyne, C. M., & Virani, S. S. (2020). The use of sexspecific factors in the assessment of womens cardiovascular risk. Circulation, 141(7), 592-599. https://doi.org/10.1161/CIRCULATIONAHA.119.043429 123 PT AND CVD IN WOMEN 124 Bairey Merz, C. N., Andersen, H., Sprague, E., Burns, A., Keida, M., Walsh, M. N., Greenberger, P., Campbell, S., Pollin, I., McCullough, C., Brown, N., Jenkins, M., Redberg, R., & Johnson, P. (2017). Knowledge, attitudes, & beliefs regarding cardiovascular disease in women: The Womens Heart Alliance. Journal of the American College of Cardiology, 70(2), 123132. http://dx.doi.org/10.1016/j.jacc.2017.05.024 Bairey Merz, C., Ramineni, T., Leong, D. (2018). Sex-specific risk factors for cardiovascular disease in women-making cardiovascular disease real. Current Opinion in Cardiology, 33(5), 500-505. https://doi.org/10.1097/HCO.0000000000000543 Garcia, M. Mulvagh, S. L., Bairey Merz, C. N., Buring, J. E., & Manson, J. E. (2016). Cardiovascular disease in women. Circulation Research, 118(8), 1273-1293. https://doi.org/10.1161/CIRCRESAHA.116.307547 Specific to Physical Therapy American Physical Therapy Association. (2019, Sept 20). Physical therapists role in prevention, wellness, fitness, health promotion, and management of disease and disability. https://www.apta.org/siteassets/pdfs/policies/pt-role-advocacy.pdf Arena, S. K., Reyes, A., Rolf, M., Schlagel, N., & Peterson, E. (2018). Blood pressure attitudes, practice behaviors, and knowledge of outpatient physical therapists. Cardiopulmonary Physical Therapy Journal, 29(1), 3-13. https://doi.org/10.1097/CPT.0000000000000068 Million Hearts. (2020). Cardiac rehabilitation at a glance. https://millionhearts.hhs.gov/data-reports/factsheets/cardiac.html Rethorn, Z., Covington, J., Cook, C., & Bezner, J. R., (2021). Physical activity promotion & attitudes and practices among outpatient physical therapists: Results of a national survey. Journal of Geriatric Physical Therapy, 44(10), 25-34. https://doi.org/10.1519/JPT.0000000000000289 Severin, R., Sabbahi, A., Albarrati, A., Phillips, S. A, & Arena, S. (2020). Blood pressure screening by outpatient physical therapists: A call to action and clinical recommendations. Physical Therapy, 100(6), 1008-1019. https://doi.org/10.1093/ptj/pzaa034 Severin, R., Wang, E., Wielechowski, A., & Phillips, S. A. (2019). Outpatient physical therapist attitudes toward and behaviors in cardiovascular disease screening: A national survey. Physical Therapy, 99(7), 833848. https://doi.org/10.1093/ptj/pzz042 EDUCATIONAL RESOURCES/INFOGRAPHICS Know the Differences - CVD terminology - National Heart, Lung, & Blood Institute https://www.nhlbi.nih.gov/sites/default/files/media/docs/Fact_Sheet_Know_Diff_Design. 508_pdf.pdf Heart Attack Symptoms: Men vs. Women https://www.heart.org/en/news/2020/01/21/get-familiar-withsigns-of-a-heart-attack-or-str oke The Facts on Women & Heart Disease (Womens Heart Alliance) https://womensheartalliance.org/2019/03/facts-women-heart-disease-symptoms/ PT AND CVD IN WOMEN 125 The Facts about Women and Heart Disease (Go Red for Women, American Heart Association) https://www.goredforwomen.org/en/about-heart-disease-in-women/facts#:~:text=Cardiov ascular%20disease%20kills%20more%20women,is%20their%20greatest%20health%20t hreat. Women and Heart Disease: Be Your Own Hero https://www.cardiosmart.org/assets/infographic/womenand-heart-disease Equality in Smoking & Disease: Nobody Wins The Health Consequences of Smoking 50 Years of Progress: A Report of the Surgeon General https://www.cdc.gov/tobacco/infographics/health-effects/pdfs/womensinfographic_with_ call_to_action_508v2.pdf Move Your Way https://health.gov/moveyourway References (for this handout) References (from the presentation)  ...

... Inclusion of Health and Wellness Promotion in Outpatient Physical Therapy and Factors Associated with Inclusion Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Jill Henderzahs-Mason PT, DPT, Board Certified Orthopaedic Specialist Copyright April 19, 2023 By: Jill Henderzahs-Mason PT, DPT, Board Certified Orthopaedic Specialist All rights reserved Approved by: Paul Salamh, PT, DPT, PhD Committee Chair ______________________________ Lisa Yazel, EdD, MCHES Committee Member ______________________________ Heidi H. Ewen Ph.D., FGSA, FAGHE Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ WELLNESS INCLUSION IN PHYSICAL THERAPY Inclusion of Health and Wellness Promotion in Outpatient Physical Therapy and Factors Associated with Inclusion Jill Henderzahs-Mason Interprofessional Health and Aging Studies, University of Indianapolis 1 WELLNESS INCLUSION IN PHYSICAL THERAPY 2 Abstract Introduction: Physical therapists (PTs) have been called to action to address the chronic disease burden in the United States by incorporating health promotion, wellness, and disease prevention (HPWP) topics in practice. To date, irregular HPWP inclusion in practice has been reported, though few studies have viewed incorporating topics aside from physical activity. Methods: A non-experimental cross-sectional survey design was used to assess the frequency of HPWP inclusion specifically, physical activity, nutrition, sleep, stress management, and tobacco cessation, with patients in general outpatient physical therapy practice. Factors associated with including each HPWP topic and all topics holistically were also investigated. PTs were asked to answer questions related to the discussion of HPWP topics with patients during initial patient evaluations and personal knowledge, beliefs, and barriers to inclusion. Results: The frequency of HPWP inclusion and significant factors related to inclusion were noted. Aside from the frequent inclusion of physical activity, holistic and other topic inclusion was notably less. Chi-square analysis was performed to determine relationships, with a Cramers V to assess effect size. Significant relationships were noted between beliefs about the inclusion of tobacco cessation and sleep and the inclusion of these topics in conversations. Depth of HPWP knowledge was also strongly associated with sleep as well as stress management conversations with patients. Barriers to HPWP topic inclusion included lack of reimbursement, inappropriate work environment, and lack of employer support. Conclusion: Findings support the need to explore these findings further and consider developing HPWP education for PTs. Key Words: health promotion, wellness, prevention, physical therapy WELLNESS INCLUSION IN PHYSICAL THERAPY 3 Acknowledgments With utmost gratitude, I wish to thank my dissertation committee, specifically my committee chair Dr. Paul Salamh PT, DPT, Ph.D., my content expert Dr. Lisa Yazel Ed.D., MCHES, and my analysis expert Dr. Heidi Ewen, Ph.D. I greatly appreciate your respective points of view and patient willingness on this journey. Additionally, to Dr. Salamh, thank you for your concise and efficient communication, and for sharing your expertise from a research publication perspective. To Dr. Yazel, thank you for your attention to detail and for ensuring accuracy in language usage. To Dr. Ewen, thank you for your immense help in working through the analysis for this project, including giving me your time in the evening and on weekends. I greatly appreciate the faculty of the UIndy Doctor of Health Science program. I have gained great experiences from each of you and have appreciated the opportunity to learn from afar. Special thanks to Dr. Laura Santurri for your support, especially in helping to put together a well-rounded dissertation committee, and for your well-organized approach to program and course coordination and organization. Thank you to the defense panel for your time and insights. I look forward to your feedback during this process. Additionally thank you to my husband William, and my son Liam for your support in my relentless pursuit of knowledge. My fur critters should also be mentioned, for the valuable late-night support that they provided. WELLNESS INCLUSION IN PHYSICAL THERAPY 4 Table of Contents Abstract ........................................................................................................................................... 2 Acknowledgments 3 Table of Contents ............................................................................................................................ 4 Introduction ..................................................................................................................................... 7 Problem Statement ...................................................................................................................... 9 Statement of Purpose................................................................................................................. 10 Theoretical Perspective ............................................................................................................. 10 Research Questions ................................................................................................................... 11 Objectives .................................................................................................................................. 11 Significance of the Study .......................................................................................................... 11 Literature Review.......................................................................................................................... 12 HPWP Topics ............................................................................................................................ 15 Physical Activity.................................................................................................................... 15 Nutrition and Healthy Weight ............................................................................................... 17 Sleep ...................................................................................................................................... 18 Stress Management ................................................................................................................ 19 Smoking Cessation ................................................................................................................ 21 HPWP in Practice ...................................................................................................................... 22 Method .......................................................................................................................................... 25 Study Design ............................................................................................................................. 25 Participants ................................................................................................................................ 25 Data ........................................................................................................................................... 26 Operational Definitions ......................................................................................................... 27 Instruments ............................................................................................................................ 27 Procedures ................................................................................................................................. 29 Recruitment ........................................................................................................................... 29 Participant Pre-Screening ...................................................................................................... 30 Informed Consent .................................................................................................................. 30 Data Management .................................................................................................................. 30 Data Analysis ......................................................................................................................... 31 WELLNESS INCLUSION IN PHYSICAL THERAPY 5 Results ........................................................................................................................................... 32 Demographics............................................................................................................................ 32 Study Objective One. ................................................................................................................ 33 Study Objective Two ................................................................................................................. 34 Study Objective Three ............................................................................................................... 34 Discussion ..................................................................................................................................... 37 Limitations ................................................................................................................................ 41 Conclusion .................................................................................................................................... 41 References ..................................................................................................................................... 43 Appendix A ................................................................................................................................... 58 IRB Approval ............................................................................................................................ 58 Appendix B ................................................................................................................................... 59 Survey........................................................................................................................................ 59 Appendix C ................................................................................................................................... 80 Informed Consent ...................................................................................................................... 80 Appendix D ................................................................................................................................... 81 Tables for Results ...................................................................................................................... 81 Table 1 ....................................................................................................................................... 81 Sociodemographic Characteristics of Respondents ............................................................... 81 Table 2 ....................................................................................................................................... 83 Characteristics Reported by Physical Therapists................................................................... 83 Table 3 ....................................................................................................................................... 84 Relationships Between Beliefs About Inclusion of a HPWP Topic and Inclusion in Patient Care ........................................................................................................................................ 84 Table 4 ....................................................................................................................................... 85 Relationships Between Depth of HPWP Knowledge and Inclusion of HPWP in Patient Care ............................................................................................................................................... 85 Table 5 ....................................................................................................................................... 86 Relationships Between HPWP Personal Behaviors and Inclusion of HPWP Topics in Patient Care ........................................................................................................................................ 86 Appendix E ................................................................................................................................... 87 Figure 1 ..................................................................................................................................... 87 WELLNESS INCLUSION IN PHYSICAL THERAPY 6 Rates of HPWP Topic Inclusion in Physical Therapist Outpatient Practice ......................... 87 WELLNESS INCLUSION IN PHYSICAL THERAPY 7 Inclusion of Health and Wellness Promotion in Outpatient Physical Therapy and Factors Associated with Inclusion According to the Centers for Disease Control and Prevention (CDC, 2021), 6 in 10 Americans in the United States (U.S.) live with at least one chronic disease, such as heart disease or stroke, diabetes, or cancer. These types of illnesses are among the leading causes of death, placing an incredible financial burden on the healthcare system estimated to be $3.8 trillion per year (CDC, 2021; U.S. Department of Health and Human Services [DHHS], 2014). Many chronic diseases are both preventable and treatable through lifestyle changes that address healthy nutrition (Marczak et al., 2016; Micha et al., 2017), physical activity (Farzanegi et al., 2019), smoking cessation, sleep (CDC, 2017; Siengsukon et al., 2017), and stress management (Roy et al., 2018) among other behaviors. A variety of healthcare professionals typically encounter patients with chronic illness during diagnosis and/or treatment, including primary care and specialty physicians, nurses, social workers, pharmacists, physical therapists, and occupational therapists, in addition to other support staff. Interactions with many of these healthcare professionals are time-constrained due to other care priorities during the patient-provider encounter. (Braillard et al., 2018). Outpatient physical therapists (PTs) spend more one-on-one time with patients than many other healthcare professionals, allowing them to bridge the gap in wellness that may only be touched upon by other providers (American Physical Therapy Association [APTA], 2019). Physical therapists are well-positioned to address lifestyle change through assessments and interventions targeting health promotion, wellness, and prevention (HPWP) within their scope of practice (APTA, 2019; Bezner, 2015; Taukobong et al., 2014). Incorporating HPWP involves viewing a person holistically to assist them in reaching a balanced state of health inclusive of physical, mental, and WELLNESS INCLUSION IN PHYSICAL THERAPY 8 social well-being. According to the APTA, PTs have the responsibility to intervene and educate regarding lifestyle strategies to aid in disease prevention and promote enhanced well-being (APTA, 2019; Bezner, 2015). Respondents from 100 graduate physical therapy programs indicated that their curriculum included a health promotion component (95.1%), a prevention component (96.1%), and a wellness component (98%) (Rethorn et al., 2021). Additionally, the Commission on Accreditation in Physical Therapy Education (CAPTE) includes health promotion, prevention, and wellness under one standard which falls within the section on management in care delivery (7D34; CAPTE, 2020). While CAPTE includes HPWP in accreditation guidelines, details are lacking to describe the competencies needed to achieve this (CAPTE, 2020). This lack of details may contribute to findings that suggest a significant amount of variation in time spent on education about these topics, including how extensively HPWP topics were covered in physical therapist curricula (Rethorn et al., 2021). Additionally, physical therapy graduates of the past may have received no training in the HPWP arena at all, resulting in less initiation of HPWP conversations in outpatient physical therapy practice. PTs have a professional obligation to prepare themselves to have HPWP conversations as part of their practice given the drive by the physical therapy profession for PTs to be advocates of disease prevention and health promotion (APTA, 2019) and the burden of chronic disease which may be addressed through lifestyle modifications. Understanding PTs educational background as it relates to including HPWP during patient care encounters is critical to identifying deficiencies in training. Literature is limited in the integration of wellness into patient care experiences by outpatient PTs in general practice. It has been found that most wellness conversations addressed general physical activity (Black et al., 2016; Rea et al., 2004; Rethorn et al., 2021; Wendland et WELLNESS INCLUSION IN PHYSICAL THERAPY 9 al., 2020), and nutrition to a lesser degree (Black et al., 2016; Rea et al., 2004; Wendland et al., 2020; Wilson et al., 2021), with minimal to no inclusion of other wellness components, such as smoking cessation or resiliency topics such as stress management and sleep. Of those reporting a lack of inclusion of wellness conversations, particularly in the areas of sleep, stress management, and smoking cessation, it was noted that PTs did not feel confident in providing advice or engaging in discussion of these topics (Bezner, 2015; Bodnar et al., 2020; Ekong et al, 2017; Pignataro, 2017; Rea et al., 2004; Siengsukon et al., 2015). Other factors cited as barriers have included time constraints (Bezner, 2015; Lucado et al., 2018; Rea et al., 2004; Wendland et al., 2020; Wilson et al., 2021), and perceived lack of patient interest (Bezner, 2015; Lucado et al., 2018; Wendland et al., 2020; Wilson et al., 2021). Lack of knowledge, lack of experience (Bezner, 2015; Wilson et al., 2021), and lack of perceived importance as a core responsibility within the physical therapy profession (Lucado et al., 2018; Wendland et al., 2020) were also noted as barriers by a smaller number of respondents. Problem Statement Physical therapists inclusion of HPWP conversations offers a promising means to help those at risk of developing a chronic disease in addressing lifestyle modifications needed for prevention. PTs have a vested interest in patients physical activity habits (Englund et al., 2021; Tieland et al., 2018), nutritional needs (Berner et al., 2021; Tatta et al., 2022), sleep hygiene (CDC, 2017; Nijs et al., 2018; Siengsukon et al., 2017), ability to cope with stressors (Rolbiecki, 2017; Tatta et al., 2022) and cigarette smoking behavior (Lassig et al., 2018; Liu et al., 2018; Sorenson, 2012) due to the important role that these factors play in the healing process and patients return to normal function. Outpatient PTs are positioned to incorporate HPWP conversations into their practice due to the connectedness of the previously noted HPWP topics WELLNESS INCLUSION IN PHYSICAL THERAPY 10 with the healing process. Additionally, professional physical therapy preparation, substantial face time with patients, and the ability to help patients tailor personal goals to individual needs optimally position PTs to serve as HPWP providers. The literature additionally supports that patients expect to discuss such topics with their providers (Black et al., 2016). Many PTs are not including any wellness discussion, and most are not addressing all components of wellness in their practice despite being well-suited to be HPWP providers. Limited evidence exists to understand factors associated with the inclusion of wellness conversations by physical therapy providers in the general outpatient physical therapy setting. Statement of Purpose The purpose of this study is to identify the degree to which outpatient PTs in general practice are including wellness conversations within their practice and to identify factors that are associated with the inclusion of these topics in practice. Theoretical Perspective The Theory of Planned Behavior (TPB) was described by Ajzen (1985) to study behavior and the factors influencing a given behavior. TPB posits that the interplay of attitudes, subjective norms, and perceived behavioral control work together to form intentions that further translate into behavior. In a systematic review of studies predicting healthcare clinician behavior, Godin et al. (2008) suggest that the TPB is best able to predict clinician behavior when compared to other social cognitive theories. Godin et al. (2008) expanded the TPB components to explain that beliefs about consequences, social influences, roles, subjective norms, and intrinsic personal characteristics affect behavioral intention. These behaviors are influenced by past behavior, and beliefs about capabilities to form the resultant behavioral outcome. As applied to this study, the TPB suggests that the independent variables (beliefs, knowledge, barriers, and background) will WELLNESS INCLUSION IN PHYSICAL THERAPY 11 explain the dependent variable of HPWP integration because these factors may help to predict the behavioral outcome of the inclusion of HPWP in practice. Research Questions 1. How do PTs knowledge, beliefs, and perceived barriers in the outpatient clinical setting relate to the inclusion of health and wellness promotion with patients? Objectives 1. Identify the frequency at which singular wellness conversations are included within initial patient evaluations in general outpatient physical therapy practice. 2. Identify the frequency at which comprehensive (holistic) wellness (physical activity, nutrition, stress management, sleep, and smoking cessation) conversations are included within initial patient evaluations in general outpatient physical therapy practice. 3. Identify factors associated with the inclusion of wellness conversations with individual patients during initial patient evaluations in the general outpatient physical therapy setting. Significance of the Study This study aims to identify the degree to which wellness conversations are included in the general outpatient physical therapy setting and to identify factors associated with clinician engagement in wellness conversations. Understanding the frequency with which wellness conversations occur in outpatient physical therapy practice will help to define where gaps in care exist. Further, understanding the factors associated with including wellness conversations in the outpatient physical therapy environment will better inform the physical therapy profession where professional development gaps exist for practitioners. WELLNESS INCLUSION IN PHYSICAL THERAPY 12 Literature Review Public health statistics demonstrate that individuals living in the U.S. continue to suffer a high rate of morbidity and mortality due to cardiovascular disease, cancer, diabetes, and other chronic diseases (CDC, 2017; Roth et al., 2018; World Health Organization [WHO], 2018). Key risk factors for chronic diseases include physical inactivity, poor dietary habits, cigarette smoking, and excessive drinking (CDC, 2021). Though these factors alone result in deleterious health effects, other factors such as sleep deficits, stress, and a general lack of knowledge about how certain behaviors impact health outcomes contribute to the health behaviors and chronic diseases as referenced above (CDC, 2017; CDC, 2021). The Office of Disease Prevention and Health Promotion (ODPHP) updates public health goals every 10 years and recently published Healthy People 2030 (ODPHP, n.d.), setting 355 data-driven, measurable objectives to steer health behaviors within the U.S. The ODPHP further defines leading health indicators (LHIs) to identify high-priority areas within the population (ODPHP, n.d). These high-priority areas are measurable and modifiable, focusing on behaviors such as performance of cardiovascular or strength activities or screening for disease, and not on disease outcomes. Five of the eight LHIs identified for adults address health-related behavioral habits including increasing the proportion of adults getting colorectal cancer screening, increasing the proportion of adults getting enough strength and cardiovascular physical activity, reducing cigarette smoking in adults, reducing the proportion of those 21 and older binge drinking over a month, and increasing the control of high blood pressure in adults (ODPHP, n.d.). The other three indicators address reducing the incidence of diabetes mellitus diagnosed yearly, the incidence of maternal deaths, and employment in working-age adults (ODPHP, n.d.). Government organizations such as the National Institutes of Health (NIH, 2020) and CDC WELLNESS INCLUSION IN PHYSICAL THERAPY 13 (2021), have developed evidence-based program interventions designed to address these behaviors, but many individuals are unaware of them or do not feel a personal connection to them (Bender et al., 2015; Michael et al., 2008). Efforts to target behavior change to improve health and prevent disease fall under the umbrella of health promotion. Health promotion is classically defined as the process of "enabling people to increase control over and to improve, their health" (WHO, 1986). Health promotion often couples with wellness and disease prevention (often termed HPWP) in the literature. Wellness has been defined in a variety of manners, with some disagreement over exactly what is included in the definition (National Wellness Institute, 2020). However, physical, intellectual, psychological, emotional, spiritual, and social domains have been utilized conceptually in research to comprise the concept (Stoewen, 2017). Consensus about which dimensions comprise the concept of wellness seems less significant when one acknowledges the idea that wellness is ultimately a variety of dimensions dynamically interacting with each other (Bezner, 2015). Health and wellness promotion to affect behavior change has been underemphasized in the Western medical model (Bodai et al., 2018; Bodenheimer, 2008; Morris & Jenkins, 2018) which tends to approach patients more with passive treatment options than active preventive strategies. Bridging the gap between traditional medical care and self-driven prevention strategies is a critical need to realize the health indicators referenced above. In June 2015, the American Physical Therapy Association (APTA) House of Delegates adopted a population health priority to steer work towards prevention, wellness, fitness, health promotion, and management of disease and disability (RC-11-15). The APTA identifies HPWP as an area of expertise for PTs in a policy statement (APTA, 2019), noting that PTs have the expertise to help the population, and individuals in the prevention of certain health conditions, and improve WELLNESS INCLUSION IN PHYSICAL THERAPY 14 overall health. This stance by the APTA supports PTs role in addressing the leading health indicators previously identified at an individual and community level. The benefit of shifting the focus of care towards wellness and away from disease is an opportunity that PTs are well equipped to realize. Many patients view their primary medical providers as the best source of information about health and wellness, lacking awareness of a PTs scope of practice and education (Kearns et al., 2014). Kettle et al. (2022) noted that patients were up to 33% more likely to engage in physical activity when it was addressed by a primary health provider, on average increasing by 14 minutes per week. Unfortunately, medical providers are limited in the time they can spend with patients hindering the opportunity to address HPWP topics (Porter et al., 2022). PTs tend to have more one-on-one time than other healthcare providers and aim to treat individuals holistically, setting the stage for personal wellness conversations (Bezner, 2015; Lien et al., 2017). Bezner (2015) reports five basic areas of HPWP that PTs are trained to engage in: physical activity, nutrition, and weight management, stress management, sleep, and smoking cessation. PTs are well-positioned to approach these HPWP topics with patients due to their extensive training and background, addressing specific health needs, and ensuring a tailored, integrated approach to help modify health behaviors for each patient. Unfortunately, while PTs are well-positioned to address HPWP, the frequency, and consistency with which they initiate conversations about such topics is less than ideal (Lucado et al., 2018; Morris & Jenkins, 2018). Curricular preparation is variable among physical therapy training programs, with inconsistent depth and breadth of HPWP topics covered in didactic and clinical curricula (Morris & Jenkins, 2018) which may leave PTs unprepared to confidently address topics in practice. Rethorn et al. (2021) noted that as few as 15% of DPT programs WELLNESS INCLUSION IN PHYSICAL THERAPY 15 covered HPWP in-depth, with noted barriers including lack of faculty training, perceived lack of importance of HPWP, and logistical constraints. Rethorn et al. (2022) noted that consistent inclusion of physical activity conversations in practice was strongly associated with understanding behavior change strategies as opposed to simply understanding guidelines around recommendations of topic inclusion in practice. HPWP Topics Physical Activity Regular physical activity provides several positive health benefits (Cabral et al., 2019; Chen et al. 2020; Englund et al., 2021; Farzanegi et al., 2019; Gomes-Osman et al., 2018; McCarthy et al., 2015; McGough et al., 2017; Ray et al., 2023; Schafer et al., 2020; Taukobong et al., 2014; Tieland et al., 2018; Wu et al., 2019). Reductions in body mass index (BMI), fat mass, body weight, and waist circumference, all related to decreased risk of various diseases, have been associated with regular exercise (Englund et al., 2021; Taukobong et al., 2014). Additionally, exercise benefits carry over to improvements in lipid, triglyceride, and glucose levels, thereby reducing the effects of metabolic diseases such as diabetes mellitus and nonalcoholic fatty liver disease (Farzanegi et al., 2019). Muscle performance and functional outcome measures (Englund et al., 2021; Tieland et al., 2018), as well as reductions in chronic pain levels (Ray et al., 2023), have been associated with regular physical activity as well. Focused exercise in the form of pulmonary rehabilitation improves activity capacity, dyspnea, fatigue, emotional well-being, and symptom control in those with chronic obstructive pulmonary disease (McCarthy et al., 2015). Regular exercise also reduces senescent cell burden, diminishing some of the adverse effects of aging that are related to disease (Chen et al. 2020; Schafer et al., 2020). An area with WELLNESS INCLUSION IN PHYSICAL THERAPY 16 more recent evidence includes the role of physical activity in preserving brain health during the aging process (Cabral et al., 2019; Gomes-Osman et al., 2018; McGough et al., 2017; Wu et al., 2019). Regular light to moderate-intensity physical activity, three times per week improved cognition by acting on processing speed and executive function, similar functions affected by the cognitive aging process (Gomes-Osman et al., 2018). Mind-body exercises, such as Tai Chi and dance, have been shown to improve working memory, global cognition, verbal fluency, and cognitive flexibility in cognitively intact and impaired older adults (Wu et al., 2019). Further, Cabral et al. (2019) found that different modes of exercise produce distinctive unique benefits for cognition maintenance or improvements, such as aerobic exercise and coordination exercise increasing white matter integrity and hippocampal volume, further supporting the idea of engaging in a variety of different types of physical activity to prevent cognitive decline. Physical therapists are well-equipped to integrate exercise prescriptions into care plans for patients (Bezner, 2015; Taukobong et al., 2014). PTs tend to be more physically active than the general population, modeling behaviors that further lend credibility to their expertise as movement professionals (Black et al., 2016; Black et al., 2012; Wendlund et al., 2020). Black and colleagues (2016) administered a descriptive cross-sectional survey to 230 physical therapy patients from eight outpatient clinics in Michigan and Minnesota to identify patient expectations of their PT concerning HPWP topics. Many patients reported viewing their PT as an HPWP professional. Black et al. (2016), noted that of the patients surveyed, over 90% thought that their PT should advise them on, discuss the benefits of, and recommend physical activity for them. WELLNESS INCLUSION IN PHYSICAL THERAPY 17 Nutrition and Healthy Weight Proper nutrition plays a key role in the prevention and treatment of obesity and chronic disease (Marczak et al., 2016; Micha et al., 2017). It has also been shown to positively affect wound and tissue healing, muscle strength, and bone health needed for proper rehabilitation (Berner et al., 2021), as well as pain perception and management for those with chronic pain (Brain, et al., 2019). It is well-supported that Americans living in the U.S. tend to overeat, consuming more processed, high-fat, and high-sugar food than they should (Dietary Guidelines Advisory Committee [DGAC], 2016). Additionally, Americans lack appropriate consumption of important vitamins and minerals, with 31% of Americans deficient in at least one vitamin or mineral considered necessary for adequate nutrition (Bird et al., 2017). The DGAC (2016) notes that vitamin D, calcium, potassium, and fiber are lacking in many Americans diets leading to associated health concerns. These vitamins and minerals are critical for such things as bone health, immune function, cancer, and diabetes prevention in addition to blood pressure control. Other nutrients, such as sodium, added sugar, and saturated fat (DGAC, 2016), as well as processed food, are also overconsumed in the American diet (Rico-Campa et al., 2019) Risk of all-cause mortality increases with the consumption of four or more processed foods by greater than 62%, with each additional serving increasing risk by 18% (Rico-Campa et al., 2019). These numbers point to public health and wellness concerns that desperately need to be addressed with patients on an individual basis. Due to the primary, secondary, and tertiary role nutrition plays in conditions that PTs treat, the APTA identifies it as a key component of the HPWP assessments and interventions that they provide (APTA, 2019). Primarily, nutrition serves to promote health and prevent disease in every patient. The secondary role of nutrition is to help eliminate certain illnesses and diseases, WELLNESS INCLUSION IN PHYSICAL THERAPY 18 such as facilitating wound healing. The tertiary role includes the management of conditions or diseases that may not be reversible, such as blood sugar control for diabetic patients. PTs have also identified nutrition and weight management as key areas that should be included in their practice (Black et al., 2016; Tatta et al., 2022; Wendland et al., 2020; Wilson et al., 2021). To better enable PTs to incorporate educated nutritional conversation in practice, Berner et al. (2021) have put together a thorough nutritional review combining the best evidence for practice. Sleep Sleep has been found to significantly impact many facets of wellness and disease prevention including effects on cardiovascular health, immune function, learning and memory, cognitive function, acquisition of motor skills, and depression, both, directly and indirectly, affecting patient care within the clinical setting (Siengsukon et al., 2017). Chronic sleep deprivation has been linked with public health issues including obesity, depression, cardiovascular disease, diabetes, increased risk of accidents, injuries, and falls, dementia (CDC, 2017), and chronic pain (Nijs et al., 2018). In a systematic review of 153 studies, Itani et al. (2017) found that those who chronically received 6 hours or less of sleep per night were more likely to have an absolute increase in Diabetes Mellitus (37%), hypertension (17%), coronary heart disease (26%), obesity (38%), and cardiovascular disease (16%). To combat the ill effects of sleep deprivation, the American Academy of Sleep Medicine and Sleep Research Society (Watson et al., 2015) recommends adults achieve seven hours of sleep per night, however, about 28% of men and 27% of women over age 18 do not meet this requirement (CDC, 2022). Further, over 30% of both men and women in the 4564-year age group reported averaging less than the recommended seven hours. WELLNESS INCLUSION IN PHYSICAL THERAPY 19 Patients agree that PTs should be screening for sleep disorders and offering interventions and education on the importance of sleep (Bezner, 2015; Siengsukon et al., 2017). Of the PT respondents surveyed, more than half noted the importance of assessing and discussing sleep, although others still felt unequipped to broach the topic with their patients (Siengsukon et al., 2017). Barriers to PTs addressing sleep include a lack of formal professional education in physical therapy programs, as well as in continuing education in professional practice (Siengsukon et al., 2015). Siengsukon et al. (2017) suggest that PTs should be asking patients questions about sleep related to the conditions for which they are being seen in physical therapy and using additional screening tools as needed to further understand sleep issues. PTs role in addressing sleep may include discussion and screening as previously noted, in addition to educating about body positioning, bed mobility, sleep hygiene, exercise programming, and providing further referrals as needed to assist in helping patients receive adequate rest (Siengsukon et al., 2017). Additionally, relaxation techniques are supported interventions that may be incorporated to assist patients with improving sleep patterns and reducing insomnia (Friedrich and Schlarb, 2018), and are often within the PTs toolbox. Stress Management Negative stress sustained over time may lead to chronic stress-related illnesses, including cardiovascular disease, and the onset or exacerbation of diabetes, and may contribute to a higher BMI (Roy et al., 2018). Effective coping strategies are a means to help combat the ill effects of perceived distress (Mariotti, 2015). These strategies are one component that falls under the term resiliency, which has been described as a dynamic, multidimensional process of adapting to stress (Denckla et al., 2020). Resiliency skills are teachable and serve as a valuable intervention WELLNESS INCLUSION IN PHYSICAL THERAPY 20 to frame stress into a positive experience that serves as a motivator (Bezner, 2015). Rolbiecki (2017) found that resiliency skills positively impact clinical outcomes, helping those with chronic pain to deal with their pain and improving self-efficacy for pain management. Functional magnetic resonance imaging (fMRI) studies have found that mindfulness and acceptance-based interventions (MABIs) have been shown to activate the insular cortex, an area responsible for regulating the immune system, sympathetic and parasympathetic function, as well as accurate self-assessment (Uddin et al., 2017). Guided interventions to improve habit formation concerning physical activity (Fleig et al., 2016; Kaushal et al., 2017) and nutrition (Pyatak et al., 2018), are effective in helping patients make sustained changes. As noted previously, relaxation techniques are supported interventions to improve sleep and reduce insomnia (Friedrich and Schlarb, 2018) and are a staple in physical therapy education programs. Instructing patients in relaxation techniques may also effectively address stress management and enhance resiliency skills (Hopper et al., 2019; Park et al., 2019). In addition to relaxation skills, PTs may also employ motivational interviewing and mindfulness as tools to help patients enhance their resiliency skills. Motivational interviewing (MI) is regularly employed in PT practice, particularly during the initial patient evaluation, when attempting to understand and affect behavior change to improve health outcomes (Lundahl et al., 2013). As a client-focused counseling style, MI can be employed by PTs to identify stressors and determine a proper intervention strategy to address concerns that may adversely affect therapeutic outcomes. Mindfulness is another method of approaching behavior change and is the act of accepting thoughts, sensations, and emotions without judgment as they happen (Kabat-Zinn, 1990). Mindfulness may be enhanced through a variety of activities including meditation and WELLNESS INCLUSION IN PHYSICAL THERAPY 21 yoga. Mindfulness meditation has been shown to mitigate stressors that when left uncontrolled, lead to inflammatory-mediated illnesses (Black et al., 2019). Having an awareness of what is occurring in the moment with the behavior and comparing it to the desired outcome offers the opportunity to internalize the need for behavior change (Sohl et al., 2016). Smoking Cessation Cigarette smoking is the leading cause of preventable disease, disability, and death in the U.S. (U.S. Department of Health and Human Services [DHHS], 2014). Smoking is destructive to nearly every part of the body and costs the U.S. government billions of dollars for medical costs each year (U.S. DHHS, 2014). While smoking has decreased by nearly two-thirds since 1965 (U.S. DHHS, 2014), numbers continue to be a public health concern, with 34.2 million Americans (nearly 14%) still smoking cigarettes in 2018 (Creamer et al. 2019). Incidence varies by area, with some states in the Midwest reporting rates as high as almost 24% (West Virginia and Kentucky) while Western states note rates as low as 9% (Utah) (CDC, 2018), indicating a greater need for assessment in those areas of greater incidence. Smoking cigarettes has been highly associated with wound healing delays that are especially relevant in the PT setting, as cigarette smoking impairs various aspects of cellular healing processes and diminishes immune function (Sorenson, 2012). Surgical outcomes, including wound healing and bone fusion, are often poor in smokers due to inadequate oxygenation and delays in cellular processes in the inflammatory stage of healing (Lassig et al., 2018). These delays can lead to higher rates of amputation for those with diabetic foot ulcers than for those who do not smoke (Liu et al., 2018). Cancers of various types, chronic obstructive pulmonary disease, cardiovascular disease, and well-being all improve with smoking cessation, which is beneficial at any age (U.S. DHHS, WELLNESS INCLUSION IN PHYSICAL THERAPY 22 2014). The U.S. DHHS (2020) suggests the implementation of cessation interventions across multiple healthcare platforms to improve accessibility and minimize barriers to treatment. The U.S. DHHS (2020) previously published clinical guidelines for addressing cigarette smoking. Guidelines promote brief advice that includes the 5 A's: asking about tobacco use, advice to quit, assessment of willingness to quit, assistance with the attempt to quit through counsel or referral, and arrangement for further follow-up with necessary resources (Glynn & Manley, 1989). Physical therapists may provide counseling to the patient assisting them to set a quit date and make a plan that will allow him or her to cope with the withdrawal symptoms (Pignataro, 2012). PTs have reported that they agree that they should ask patients and clients about smoking habits and provide advice to stop smoking, but do not feel prepared to provide counseling on smoking cessation (Pignataro, 2017). If clinicians are uncomfortable providing counsel or feel it is beyond their scope of practice, a referral may be the best service provided to support cessation (Bodner et al., 2020). Lien et al. (2017) developed and validated the Health-Focused Physical Therapy Model (HFPTM) for physical inactivity and smoking with input from an interdisciplinary team of healthcare providers. The HFPTM provides a four-step guided process to affect behavior change for addressing physical activity and smoking behaviors that may guide those unsure of how to approach these HPWP behaviors with patients. HPWP in Practice Conversations regarding physical activity were reported the most by patients and PTs concerning HPWP (Black et al., 2016; Rea et al., 2004; Rethorn et al., 2021; Wendland et al., 2020). Wendland et al. (2020) noted the majority of PTs reported their HPWP role includes activity promotion, and to a slightly lesser degree, nutrition education, and intervention. WELLNESS INCLUSION IN PHYSICAL THERAPY 23 However, recent studies show under-screening and under-prescription of physical activity by PTs (Rethorn et al., 2021; Taukobong et al., 2014). Rethorn et al. (2021) found that outpatient PTs infrequently screen (<13% of the time) and irregularly promote (<59% of the time) physical activity in practice. Barriers identified by PTs include lack of time (Driver et al., 2017; Lucado et al., 2018; Wendland et al., 2020; Wilson et al., 2021), financial constraints, and competing priorities (Rethorn et al., 2021), as well as patient interest, skill competency, and lack of employer support (Wendland et al., 2020; Wilson et al., 2021). Rethorn et al. (2021) did find that the most important factor in predicting the inclusion of physical activity promotion was regular screening for baseline physical activity levels, noting that those who regularly screened for baseline levels were over five times as likely to promote physical activity with patients. While nutrition has been identified as important and relevant within the PT-patient relationship, older studies have reported low numbers (19%, and 10%) of PTs addressing nutrition and weight management (Black et al., 2016; Rea et al., 2004), while more recent studies report much higher numbers at 71% (Wendland et al., 2020) and 88%, (Wilson et al., 2021). These numbers might look as though PTs are covering the topic of nutrition well, but the newer studies have only been representative of specific patient populations where nutrition plays a greater role in disease management. The areas of wound care, oncology, and hand therapy (Lucado et al., 2018; Wendland et al., 2020; Wilson et al., 2021) have received attention, but more general populations have been neglected, such as those presenting to outpatient PT. There is little research to indicate how PTs are addressing sleep with their patients, however, Siengsukon et al. (2015) reported that just over half (57%) of PTs reported assessing sleep habits or quality of sleep, which was performed primarily through subjective interview and/or questionnaire (>90%). Of the PTs surveyed 55% routinely educated patients about the WELLNESS INCLUSION IN PHYSICAL THERAPY 24 importance of sleep, and only 43% discussed the health benefits of sleep. While 87% agreed that educating patients about sleep would help improve outcomes, only 45% provided education to patients on how to improve sleep quality. The number one reason for not addressing sleep was reported to be a lack of knowledge in how to address or educate about sleep hygiene, and the next often cited reason was lack of time. There were a handful of PTs (6) that cited it was beyond the scope of PT practice to address sleep. Minimal evidence exists in the published literature to describe how physical therapists include stress management in physical therapist practice. The only evidence found to describe the inclusion of this topic is specific to specialist practice. Wilson et al. (2021) noted that stress management conversations were included by oncologic physical therapists in about 72% of patient interactions, while Lucado et al. (2018) reported even lower numbers among hand therapists with only about 25% regularly including it in their patient interactions. Numbers range from 31% of PTs (Pignataro, 2017) to 14% of PTs (Lucado et al., 2018) who reported incorporating smoking cessation intervention into their daily practice. PTs who considered it their professional role were more likely to incorporate smoking cessation screening (Bodnar et al., 2020). Self-efficacy in performing the behavior has additionally been shown to predict whether HWPW topics are being addressed (Bezner, 2015; Bodnar et al, 2020; Ekong et al, 2017; Pignataro, 2017; Rea et al., 2004). Since those domains outlined above (physical activity, nutrition, stress management, sleep, and smoking cessation) are interwoven together to shape an individuals wellness picture (Bezner, 2015), it is imperative to understand the extent to which PTs are incorporating them in the outpatient clinical setting and their community. Understanding how individual PT attitudes, beliefs, and barriers are identified concerning engagement in wellness conversations and how WELLNESS INCLUSION IN PHYSICAL THERAPY 25 they may relate to the inclusion of HWPW conversations is important to define what may still be needed to empower and inform these conversations in the clinical setting and the community. Method Study Design This study used a non-experimental, cross-sectional design to understand how licensed PTs backgrounds, knowledge, and prior experiences affect their use of health promotion, wellness, and disease prevention (HPWP) techniques with patients. Relationships were assessed by correlation analyses among facets of HPWP concepts and various characteristics of licensed PTs inclusive of years of experience as a licensed physical therapist, and educational background, as well as beliefs, knowledge, and barriers associated with the integration of HPWP. Data reported by PT respondents was based on initial patient appointments with, and evaluation by, the PTs. The study received approval from the University of Indianapolis Institutional Review Board on June 2, 2022 (IRB protocol #01651; Appendix A). Recruitment followed approval beginning in early-June 2022, culminating in late September 2022. Participants Convenience sampling was used to recruit participants for the study. The inclusion criteria required participants to be licensed PTs currently working in the traditional outpatient clinical practice setting who have at least 16 hours of patient care time per month and work with an adult population (patients at least 18 years or older). Traditional practice may be defined as non-specific physical therapy practice. The exclusion criteria discluded the participation of PTs who work in a non-outpatient setting, specialty area (i.e., hand therapy, wound care, etc.), and/or those who work in or have previous experience in a wellness-based setting, as well as those licensed as physical therapist assistants. Post hoc analysis with G*Power 3.1 for a medium effect WELLNESS INCLUSION IN PHYSICAL THERAPY 26 size (w = 0.3), = .05, yielded values for critical X2 = 15.507 (8, 45), X2 = 12.592 (6, 45), X2 = 9.488 (4, 45), and X2 =5.992 (2, 45). Data Data were collected using Qualtrics, an online survey program (https://www.qualtrics.com). Data collected included demographics, professional and environmental descriptors, beliefs, knowledge, perceived barriers, and wellness integration. More specifically, demographic, professional, and environmental characteristics assessed included participant age (years), gender (male or female), professional-level degree (B.S., M.S., D.P.T., including specialization such as orthopedic, neurologic, geriatric, etc.), years of experience as a licensed physical therapist, background education experience with HPWP (this included continuing education or professional core program), time allotted for initial patient evaluations, time spent with patients providing care each week, and common characteristics of patient populations (i.e. common diagnoses, other comorbid conditions, practice environment, and age range). Patient information was collected by PTs at the initial appointment and reported in aggregate form for the population whom they have provided assessments. Patient characteristics were reviewed and used to assess whether HPWP recommendations are handled disparately. Wellness integration was measured by assessing the frequency at which wellness was addressed both holistically (inclusive of all components of wellness previously listed: physical activity, nutrition, sleep, resiliency, and tobacco cessation), and singularly for a particular area during initial patient evaluations. Demographic, professional, and environmental characteristics were used to describe the sample of PTs. For purposes of this study, independent variables include beliefs, knowledge, and perceived barriers espoused by the participants and the patient typologies (categorized by WELLNESS INCLUSION IN PHYSICAL THERAPY 27 health). The dependent variables include the frequency with which wellness (HPWP) is integrated into outpatient clinical practice during initial patient evaluations singularly, and holistically. The frequency with which wellness is integrated was self-rated by PTs as never (0), rarely (> 0-25% of the time), occasionally (> 25-50% of the time), often (> 50-75% of the time), and routinely (> 75% of the time). Operational Definitions The dependent variable (wellness integration) was addressed in terms of the estimated percentage of patients with whom wellness (HPWP) is addressed on the initial evaluation visit never (0), rarely (> 0-25% of the time), occasionally (> 25-50% of the time), often (> 50-75% of the time), and routinely (> 75% of the time) both holistically (inclusive of all components previously identified) and less than holistically (missing one or more components indicated). Questions for demographics and beliefs, knowledge, and barriers were derived from a survey used by Wilson et al. (2020) for oncology PTs, which has also been used in other studies assessing HPWP knowledge, attitudes, and beliefs in wound care, and hand therapy. Instruments A survey by Wilson et al. (2021) was adapted for this study (Appendix B). The Wilson et al. (2021) original survey includes 21 questions beginning with affirming consent and verifying inclusion criteria are met. Subsections of the survey include questions about demographics, dimensions of health promotion and wellness, professional wellness practices, and personal wellness. A multiple-choice drop-down menu allows for standardized responses, with a subsection available for free text so that participants can provide additional information. The section on dimensions of health promotion and wellness allows for the participant to rate professional belief in screening for each of the health behaviors as yes, no, or unsure. This WELLNESS INCLUSION IN PHYSICAL THERAPY 28 section additionally allows the opportunity to rate what percentage of patients have common health concerns from a compiled list with options including none (0), few (> 0-25%), some (>2 5%-50%), several (> 50%-75%), and most (> 75%). The professional wellness practices section assesses the frequency with which wellness is integrated by PTs as never (0), rarely (> 025% of the time), occasionally (> 25-50% of the time), often (> 50-75% of the time), and routinely (>75% of the time) for each of the health behaviors. This section additionally has a list of potential barriers to inclusion and indicates that the participant should mark all that apply in their practice. The section on personal wellness asks PTs to self-rate how often they engage in each health behavior from never (0), rarely (> 0-25% of the time), occasionally (> 25-50% of the time), often (> 50-75% of the time), and routinely (> 75% of the time). Answers, where other exists as a potential option with free text space, will be used to note trends among participants answers and may be included as an individual category if trends exist to support inclusion. The adapted survey was adapted towards traditional outpatient physical therapists to assess knowledge, attitudes, and barriers towards HPWP, and is intended to be representative of defined areas of PT expertise in HPWP and population needs as identified in the current literature. In the original survey, Wilson et al. (2021) determined most questions had acceptable reliability with Pearsons correlation coefficient values r .70 (r = .70-1.00; p .007). Questions regarding smoking cessation (r = .67; p = .013) and stress management (r = .55; p = .051) were adapted for the final version, but reliability was not retested at that time. After the online survey was modified from the original to accommodate the target population of interest, test-retest reliability was assessed. A convenience sample of five PTs participated. Seven to nine days elapsed between completion of the first and second questionnaire, which closely aligns with Wilson et al (2021), who reported a period of two to seven days between completion. Pearsons WELLNESS INCLUSION IN PHYSICAL THERAPY 29 correlation coefficient values for the items reported showed acceptable reliability with values greater than r = 0.80 (r = 0.884-1.0; p .05), except for how often physical activity (r = 0.408; p = 0.495) and all five components together (r = 0.470; p = 0.475) were addressed. Based on the reliability findings, refinements were made including item rewording for some of the questions. After modifications were made, no additional reliability testing was performed. Procedures Recruitment Following instrument development, IRB approval, and survey validation in June 2022, the primary investigator (J. H.) initiated recruitment by reaching out to PTs with study information and participatory links (QR codes) on a variety of media platforms, including Facebook, LinkedIn, and APTA mailing lists. Colleagues, site managers, and participants were encouraged to share the study information broadly via the use of snowball sampling. A study advertisement was shared with the APTA orthopaedic section and disbursed to members one time in a weekly email blast. The advertisement included study objectives and participation instructions, inclusive of the link to the study, for those interested in participating. Finally, an internet search with the term DPT programs was used to compile a list of PT programs. Randomly selected PT program websites were reviewed from each major region of the U.S. to identify programs with ties to their alumni networks. An email with study information, including a link to the study, was sent to each PT program director selected. Directors were asked to share the information with their alumni contacts. Care was taken to ensure that at least one program director per region received an email. WELLNESS INCLUSION IN PHYSICAL THERAPY 30 Recruitment began on June 7, 2022, and continued until September 29, 2022, to achieve an adequate sample size. Monthly recruitment advertisements were posted on previously noted social media platforms during this time frame. Participant Pre-Screening Participants were pre-screened before the consent process in Qualtrics to ensure that they met inclusion criteria. The Captcha feature was activated to confirm that a real person was accessing the site. Questions with a yes or no answer were included and for answers provided that excluded participation, the potential participant was taken immediately to an exit page at the end of the survey. Informed Consent Following pre-screening for inclusion, the study description, and informed consent document were provided (Appendix C). The consent document outlined that the study is for research purposes in fulfillment of the University of Indianapolis dissertation project requirements for the Doctorate in Health Sciences degree. Participation in the study was noted to be voluntary and the possible risks and benefits to study participation were presented. There was a mandatory question asking if the individual agrees to be in the study or declines to participate in the study. Individuals who provided consent then proceeded to the survey questions within Qualtrics. Individuals who did not consent to participate in the study were taken to the end of the survey and thanked for their interest in the study. Data Management Once the survey closed, data were downloaded from Qualtrics into a file for data cleaning and data manipulation. All electronic data files were stored on a secure server that could only be accessed by the primary investigator. All efforts were made to ensure participant anonymity by WELLNESS INCLUSION IN PHYSICAL THERAPY 31 de-identifying information and stripping IP addresses. The data were then converted to IBM SPSS Statistics for Windows, Version 28.0 (SPSS; IBM Corp., Armonk, NY) format for scoring and completing analyses. Data Analysis Specific categories were collapsed to ensure adequate representation due to the low response rate for certain responses. These categories include evaluation time (reduced from four to two categories), patient impairment categories (reduced from five to three), and HPWP inclusion (reduced from five to three categories). Descriptive statistics were assessed for completeness and normality, and to determine the basic characteristics of the sample. Nominal data were reported as frequencies and percentages, as noted in Table D1 and Figure E1, and median data for ordinal and non-normally distributed data were reported in Table D2. Bivariate analysis was performed to determine how beliefs, knowledge, and perceived barriers associated with HPWP were related to the inclusion of wellness conversations in outpatient PT practice. Nominal data were tested by a Cramers V analysis to determine the effect sizes of the associations among nominal variables. Chi-square values were used to determine significance, and Cramers V values were used to note effect size. Effect sizes were noted in the various analyses per Cohens guidelines (1988) based on degrees of freedom. Wellness integration was noted by the holistic inclusion of all HPWP components previously identified (physical activity, nutrition, sleep, resiliency, and tobacco cessation). Data were analyzed using SPSS. All tests are two-tailed, and a significance level less than .05 was considered statistically significant. WELLNESS INCLUSION IN PHYSICAL THERAPY 32 Results A total of 101 responses were recorded during the data collection. The data were evaluated for completeness and 45 complete responses remained. Data were considered complete if the survey was completed in its entirety. Of the 45 participants, two accessed the survey via QR codes, and the remaining 43 accessed the survey via a secure link. Forty respondents out of the 45 responses (89%) noted that they were APTA members. Demographics The demographic characteristics of respondents were reported in Table D2. Most respondents were female (32; 71.1%) which is consistent with similar studies of this nature (Lucado et al., 2018; Wilson et al., 2020). Age was reported by decade with approximately onequarter falling within each of three age categories: 3039-year-old group (28.9%), 4049-yearold group (22.2%), and 5059-year-old group (26.7%). The majority indicated that the highestlevel degree received was the professional doctorate in physical therapy (DPT) (66.7%). Those with their orthopedic specialist certification (OCS) comprised nearly half of the sample (48.9%). Most respondents reported a suburban (42.2%) or urban (37.8%) practice location and were located primarily in the Midwest (35.5%), followed by the Southeast (22.2%) and the Northeast (17.8%) areas of the United States. The length of practice was mainly bimodal with 35.6% in practice for 20 or more years and 26.7% in practice for one to five years. Overall, the sample was comprised of female DPTs affiliated with the APTA between the ages of 30 to 59 who practice in non-rural areas of the Midwest or east coast of the United States. WELLNESS INCLUSION IN PHYSICAL THERAPY 33 Study Objective One: Identify the frequency at which singular wellness conversations are included within patient encounters in general outpatient physical therapy practice. For each of the wellness topics, participants were asked to select a category that represented their frequency of inclusion in conversations with their patients, specifically routinely (>75% of the time), often (>50 to 75% of the time), occasionally (>20 to 50% of the time), rarely (>0-25% of the time) and never included. The responses are presented in Figure 1. Participants consistently addressed physical activity, as would be expected based on physical therapist education being heavily rooted in movement science (Bezner, 2015; Taukobong, et al., 2014) and previous studies (Black et al., 2016; Rea et al., 2004; Rethorn et al., 2021; Wendland et al., 2020) which found that PA was the HPWP topic covered most often by PTs. Nutrition, however, was rarely or never addressed, which corresponds with past reports of low inclusion rates of nutrition coverage in general practice (Black et al., 2016; Rea et al., 2004). PTs also rarely or never addressed smoking cessation, a topic that they note to be important to ask about but feel unequipped to handle (Pignataro, 2017). Sleep and stress management varied considerably, yet more than half to two-thirds addressed them more than occasionally. This finding supports the idea that many PTs understand the importance of incorporating stress management and sleep topics as they relate to functional outcomes, and possibly even HPWP alone (Siengsukon et al., 2017; Wilson et al., 2021). It is also consistent with previously reported inclusion rates. Not including stress management and sleep conversations more often is likely associated with a reported lack of confidence in addressing and providing advice on these topics (Bezner, 2015; Bodnar et al., 2020; Ekong et al, 2017; Pignataro, 2017; Rea et al., 2004; Siengsukon et al., 2015) as well with reported lack of tobacco cessation conversations. WELLNESS INCLUSION IN PHYSICAL THERAPY 34 Study Objective Two: Identify the frequency at which holistic wellness (physical activity, nutrition, stress management, sleep, and smoking cessation) conversations are included within patient encounters in general outpatient physical therapy practice. Holistically, 24.4% of participants never addressed all the topics in patient encounters whereas 2% did report the inclusion of all. Approximately half of the participants (46.8%) included all the topics rarely in practice while many included them often (4.3%) or some (19%) of the time. Due to the lack of existing evidence on current trends to indicate the holistic incorporation of HPWP in outpatient PT practice, data from the current study provides insight into common practices. Study Objective Three: Identify factors associated with the inclusion of wellness conversations with individual patients in the general outpatient physical therapy setting. Participants were asked questions related to health promotion and well-being practices with patients specific to established HPWP topics of importance. As noted previously, chi-square analyses were used to determine relationships between participants knowledge, beliefs, behaviors, and cited barriers with the inclusion of each topic in practice. Cramers V measure of association was included in determining the relative significance of the relationships between nominal variables. Tables D3 through D5 present the results of chi-square and Cramers V based on the following questions. First, What Relationships Exist Between Physical Therapists Beliefs About Their Role in the Inclusion of Specific HPWP Topics and Their Inclusion of Each Singularly and Collectively (also Termed Holistically), in the Initial Patient Evaluation? There were no significant relationships between beliefs of the importance of each topic with the inclusion of all topics in practice. However, PT beliefs on tobacco cessation and sleep WELLNESS INCLUSION IN PHYSICAL THERAPY 35 management were positively related to including them individually in practice. Thus, the greater importance placed on tobacco cessation (V = .375; X2 [2, 45] = 6.34, p = .042) and sleep (V = .347; X2 [2, 45] = 6.75, p = .034), these topics were addressed with individuals in practice. The relationship between stress management beliefs and inclusion in therapy (V = .375; X2 [2, 45] = 5.42, p = .06) was not significant, but the probability was approaching significance and may emerge as such in a larger sample (Table D3). Second, What Relationships Exist Between the Physical Therapist Participants Depth of Knowledge About HPWP and the Inclusion of Each Topic in Patient Care? Depth of HPWP knowledge (V = .422, X2 [6, 45] = 16.00, p = .014) demonstrated a significant association with the inclusion of sleep conversations during initial patient evaluations. Depth of HPWP knowledge (V = .402; X2 [6, 45] = 14.54, p = .024) also demonstrated a significant relationship with the inclusion of stress management conversations during initial patient evaluations. Table 4 presents the findings of these tests. This relationship supports the lack of depth of education covered in physical therapist curricula, which may be as low as 15% (Rethorn et al., 2021), and the modest inclusion in practice reported in the current study. Third, What Relationships, if any, Exist Between the Participants Personal Behaviors and Their Inclusion of the Topics in Patient Care at the Initial Evaluation Session and Other Categories of Care (see Table D5)? The results of this set of analyses show that there are no significant relationships. Although PTs serve as role models for patients with their behaviors (Black et al., 2016), selfefficacy is a strong predictor for providing education on such topics to patients (Bezner, 2015; Bodnar et al., 2020; Ekong et al, 2017; Forbes et al., 2018; Pignataro, 2017; Rea et al., 2004; WELLNESS INCLUSION IN PHYSICAL THERAPY 36 Siengsukon et al., 2015). While many PTs engage in HPWP behaviors, this does not explain their confidence associated with instructing patients in it. Lastly, What Barriers Were Associated with Participants Inclusion of HPWP Topics During the Initial Patient Evaluations? The list of barriers included: Lack of time with the patient Lack of knowledge/education Inappropriate work environment Lack of reimbursement Lack of interdisciplinary support Lack of employer support Lack of experience The key findings of the relationships among these barriers and the inclusion of each topic in therapy were compelling. The inclusion of physical activity in patient care was related to the barrier of a lack of reimbursement (V = .420; X2 [2, 45] = 7.93, p =.019). Nutrition inclusion was hindered by the estimation that the work environment was not appropriate for the topic (V = .393; X2 [2, 45] = 6.93, p = .031). Lack of employer support as a barrier was significantly related to lack of inclusion in sleep conversations during initial patient evaluations (V = .421; X2 [2, 45] = 7.95, p =.019). Further, sleep consultations may be impeded by PTs lack of education which was marginally significant (V= .364, X2 [2, 45] = 5.97, p = .051). Barriers to the inclusion of all topics during the initial patient evaluation were inappropriate work environments (V = .431; X2 [2, 45] = 8.37, p =.015) and the lack of clinician knowledge or education (V = .381; X2 [2, 45] = 6.54, p =.038). There were no perceived barriers to the inclusion of stress and sleep WELLNESS INCLUSION IN PHYSICAL THERAPY 37 management. Since the depth of knowledge was significant with the inclusion of stress management and sleep topics and lack of education was marginally significant to sleep, but no other barriers were identified, findings suggest that PTs are primarily not including topics because they lack the tools necessary for effective delivery. This further points to the need to enhance education and experiences specific to these topics in both a professional degree program setting and in the setting of continued education. The frequency of encounters with patients of varying impairments was also related to the inclusion of HPWP topics. Depression/anxiety as a patient impairment was related to the inclusion of conversations about stress (V = .353; X2 [4, 45] = 11.20, p = .024) and nutrition (V = .333; X2 [4, 45] = 9.98, p =.041), while chronic pain as a patient impairment was associated with the inclusion of PA conversations (V = .403; X2 [4, 45]= 14.63, p =.006). There were no other significant relationships of note between patient impairments and HPWP inclusion in PT evaluation visits. The strongest relationship of note for the entire study was that of consistency of inclusion of both sleep and stress management topics. When one of these topics was included in the conversation, there was a strong and significant relationship that the other was also included (V = .593, X2 [4, 45] = 31.69, p<.001). Additionally, when sleep or physical activity was included, there was a strong and significant effect that the other was also included (V = .358, X2 [4, 45] =11.53, p =.021) in conversations during initial patient evaluation visits. Discussion One primary objective of this study was to assess the frequency with which outpatient PTs in unspecialized practice were incorporating HPWP topics singularly and holistically in practice. Encouraging findings include 80% of PTs reporting regular (routine or often) inclusion of PA, a significant increase over numbers (~40%) reported in previous studies (Lucado et al., WELLNESS INCLUSION IN PHYSICAL THERAPY 38 2018; Rethorn et al., 2021). Other topics were included routinely or often by significantly less than 80% of respondents, including 42% for stress management, 36% for sleep, and less than 10% for tobacco cessation, nutrition, and comprehensive inclusion of all topics. These findings are less than or similar to those reported within studies assessing the inclusion of HPWP topics in physical therapy practice. The current study was also able to view the frequency at which HPWP topics were included comprehensively in an integrated manner, which has not been published elsewhere in the literature and points to a small minority of PTs in the outpatient setting who are including all topics comprehensively. Of concern is the number of PTs reporting rarely or never addressing HPWP topics which included 71% of PTs for tobacco cessation, nearly 49% for nutrition, 36% for sleep, and about 29% for stress management. Further supporting this concern is the likelihood that HPWP inclusion in clinical practice has been inflated due to response bias (Fadnes et al., 2009), giving the appearance that the behavior is occurring more than it is. The lack of inclusion of most HPWP topics in regular practice suggests that more work is needed to facilitate the inclusion of topics in PT practice to meet the guidance suggested by the APTA (APTA, 2019; RC-11-15), to target health promotion and disease prevention, in addition to facilitating positive, functionbased rehabilitation outcomes specific to patient impairments. Another primary objective of the study was to identify relationships that were associated with the inclusion of HPWP in the outpatient PT setting. Specifically, the depth of HPWP knowledge, beliefs, personal HPWP behaviors, and reported barriers were all investigated to determine what factors may contribute to including HPWP conversations in outpatient PT practice. Depth of knowledge for sleep and stress management were significantly associated with the inclusion of each of these topics, pointing to the need to enhance opportunities for education WELLNESS INCLUSION IN PHYSICAL THERAPY 39 and experiences around these topics. Both lack of experience and lack of education were highly reported as general barriers to HPWP inclusion in outpatient PT practice further supporting this finding. Beliefs about whether it is a PTs role to include tobacco cessation conversations during patient care encounters were significantly related to the inclusion of tobacco cessation conversations in practice. This relationship and noted lack of inclusion in conversations with patients suggests a paradigm shift needs to occur around the role of PT in the outpatient setting as a promoter of this topic. Knowledge level (depth of HPWP education) of PTs specific to smoking cessation had a large effect, though not significant (V = .303; X2 [6, 45] = 8.27, p = .218) as a barrier to inclusion, and would benefit from further investigation to understand how education about this topic is being delivered and may be optimized in PT professional and continuing education. Lack of reimbursement was reported to be a barrier to HPWP inclusion by 24.4% of the PTs surveyed. This finding aligns with Rethorn et al. (2021) who noted financial constraints as a reported barrier to PA inclusion by physical therapists. This was also a strong and significant finding related to PA inclusion for this study as well, with PTs noting this to be a barrier and reporting less PA inclusion with patients. Patient interest, which was reported to be one of the top barriers to HPWP inclusion (57.8%) in general and has been included as a top barrier to PA inclusion in other studies (Wendland et al., 2020; Wilson et al., 2021) was not noted to be significant or strong for the inclusion of PA or other HPWP topics in this study. Physical therapist time was a top barrier to HPWP per survey respondents, which does align with PA (Driver et al., 2017; Lucado et al., 2018; Wendland et al., 2020; Wilson et al., 2021), and sleep (Siengsukon et al., 2015) inclusion in previous studies but only small effects WELLNESS INCLUSION IN PHYSICAL THERAPY 40 were noted and were not significant for PT time as a barrier to the inclusion of any singular topic in this study. Lack of time with the patient did have a large effect on holistic HPWP inclusion approaching significance (V = .360, X2 [2, 45] = 5.83, p = .054). Incidentally, time for evaluation (<45 minutes or >45 minutes) was significantly related to the inclusion of sleep (V = .393; X2 [2,45] = 6.95, p = .031), with those reporting 46 minutes or more for patient evaluations (compared to those reporting 45 minutes or less) noting significantly greater inclusion of sleep conversations with patients. Additional barriers reported (inappropriate work environment, and lack of employer support) achieved significance and aligned with previously cited barriers to HPWP inclusion in studies associated with more specialized practice (Wendland et al., 2020; Wilson et al., 2021). This suggests that PTs and clinic managers may lack an understanding of how the various HPWP topics support treatment outcomes and might be included as part of treatment planning to support the integration of topics into the care plan. These barriers may also further support time as a barrier to inclusion, since time as a factor may render a work environment inappropriate, and schedules are often guided by the employer. Lack of education was a significant finding in this study as a barrier to the inclusion of all topics holistically and has been reported as a barrier to providing sleep education (Siengsukon, 2015). In addition to this, a lack of competency has also been noted as a barrier to providing HPWP education to patients about smoking cessation and physical activity (Bezner, 2015; Bodnar et al, 2020; Ekong et al, 2017; Pignataro, 2017; Rea et al., 2004; Wendland et al., 2020; Wilson et al., 2021). Depth of knowledge and lack of education noted to be barriers in this study and lack of competency reported in other studies provides strong support for the need to enhance educational development surrounding HPWP topics for PTs. WELLNESS INCLUSION IN PHYSICAL THERAPY 41 Several factors related to the inclusion of HPWP were noted to be near significant in this study. Personal physical activity (PA) behaviors of PTs had a large effect approaching significance (V = .402; X2 [8, 45] = 14.53, p = .069) for the inclusion of physical activity conversations with patients. Similarly, beliefs about including stress conversations demonstrated a moderate to large effect size (V = .347) approaching significance (X2 [2, 45] = 5.42, p = .066) for the inclusion of the topic of stress management. Lack of knowledge as a barrier to sleep conversations demonstrated a large effect near significance as well (V = .364, X2 [2, 45] = 5.97, p = .051), which might achieve significance with a larger sample size for analysis. Limitations The generalization of results was limited due to the small sample size. Exclusion criteria for this study excluded those PTs working in a health and wellness facility from being eligible to participate. Future considerations to enhance sample size may include expanding and clarifying language in the exclusionary criteria to allow those working in a health and wellness facility to participate if their primary practice is not solely wellness. An additional consideration is that those with less access to technology or time to participate were likely not included in the sample obtained. Considerations to reduce these barriers may be to advertise and offer print versions of the survey and reach out to supervisors to encourage the empowerment of employees in completing the survey. Additionally, a more concise survey may be developed to address time constraints. Conclusion While PTs reported regularly incorporating PA at a high rate, other HPWP topics were included far less and fall short of APTA recommendations for PTs to act as HPWP advocates. HPWP inclusion has been looked at in a limited capacity for several years now with little or no WELLNESS INCLUSION IN PHYSICAL THERAPY 42 increase in the inclusion of various HPWP topics by PTs in practice. The current study was able to quantify the inclusion of HPWP in outpatient practice at present and to identify factors associated with inclusion to gain a better understanding of deficiencies that may exist specific to knowledge, beliefs, and practice environments. Barriers identified indicate a need to address knowledge gaps about HPWP in PT professional and continuing education curricula. Addressing these gaps will further reinforce the belief that PTs have a role in discussing HPWP topics and reduce barriers to the inclusion of HPWP. The PT profession would also benefit from addressing concerns related to reimbursement by enhancing advocacy for coverage of HPWP as a stand-alone service, aside from clinical care treatment plans. Future studies should consider an in-depth investigation of deficiencies in the education and knowledge levels of PTs, as well as specific details about the work environment or employer characteristics inhibiting the inclusion of HPWP in outpatient practice. This may be best achieved by first beginning with a qualitative pilot study to identify trends and themes before further expanding this to a larger sample of the population. WELLNESS INCLUSION IN PHYSICAL THERAPY 43 References Ajzen, I. (1985). 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Journal of the American Geriatrics Society, 67(4), 749758. https://doi.org/10.1111/jgs.15714 WELLNESS INCLUSION IN PHYSICAL THERAPY Appendix A IRB Approval 58 WELLNESS INCLUSION IN PHYSICAL THERAPY Appendix B Survey Health promotion, wellness, and disease prevention in outpatient PT practice Survey Flow Block: Introduction (4 Questions) Standard: Informed Consent (1 Question) Standard: Demographics (20 Questions) Standard: Dimensions of HPWP (8 Questions) Standard: Professional Wellness Practices (practice behavior over the past 2-4 weeks) (7 Questions) Standard: Personal wellness (5 Questions) Page Break 59 WELLNESS INCLUSION IN PHYSICAL THERAPY 60 Start of Block: Introduction Description To get a better sense of how clinicians address health promotion, wellness, and disease prevention in outpatient physical therapy practice, we ask you to complete this survey that was created to identify factors that facilitate health promotion activities or barriers that prevent it. Please answer the following questions to determine eligibility for inclusion. Inclusion Are you a licensed physical therapist currently involved directly in the care of patients in the general outpatient setting at least 16 hours per month? o YES o NO Skip To: End of Survey If Are you a licensed physical therapist currently involved directly in the care of patients in the... = NO Exclusion Have you ever practiced as a licensed physical therapist in a fitness or wellness setting? o YES o NO Skip To: End of Survey If Have you ever practiced as a licensed physical therapist in a fitness or wellness setting? = YES Exclusion Do you practice primarily in a specialty area outside of orthopedic practice (i.e. womens health, hand therapy, wound care, etc.)? o YES o NO WELLNESS INCLUSION IN PHYSICAL THERAPY 61 Skip To: End of Survey If Do you practice primarily in a specialty area outside of orthopedic practice (i.e. womens health... = YES End of Block: Introduction Start of Block: Informed Consent KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS This survey is part of a study through the University of Indianapolis approved by the Institutional Review Board as part of a dissertation project to fulfill requirements for the Doctor of Health Science degree. Participation is voluntary. There are no risks or direct benefits to participation, though your responses will help us with our research. Responses are considered confidential and will be stored on a secure server. We understand if you arent interested, or dont feel comfortable participating. If you would like to volunteer, please read the following information before beginning the questionnaire. CONSENT TO PARTICIPATE IN RESEARCH STUDY STUDY TITLE: Health Promotion, Wellness, and Disease Prevention (HPWP) in Outpatient Physical Therapy Practice PRINCIPAL INVESTIGATOR: Paul Salamh Ph.D., PT salamhp@uindy.edu STUDENT INVESTIGATOR: Jill Henderzahs-Mason PT, DPT, Board-certified Clinical Specialist in Orthopaedic Physical Therapy. henderzahsmasonj@uindy.edu PURPOSE AND DURATION: This study involves research on the inclusion of health promotion, wellness, and disease prevention (HPWP) in the outpatient physical therapy setting. We expect that the questionnaire will take approximately 10 minutes of your time. PROCEDURES: You will be responding to 40 questions about your demographics, experiences at work, and behaviors associated with the inclusion of HPWP in practice. RISKS AND DISCOMFORT: There are no foreseeable risks or discomfort associated with this study. BENEFITS: There are no direct benefits to you COMPENSATION: You will not be compensated for participating in this study. CONFIDENTIALITY: This is an anonymous survey. Your responses cannot be linked to you in any way. FUTURE RESEARCH Your data will not be used or distributed for future research studies even though there is no way for your data to be linked with any information that could identify you. WITHDRAWAL OF PARTICIPATION: Your participation is voluntary. Should you decide at any time during the study that you no longer wish to participate, you may withdraw your consent and discontinue your participation. WELLNESS INCLUSION IN PHYSICAL THERAPY 62 REQUEST FOR MORE INFORMATION: You may ask more questions about the study at any time. Please email the principal investigator at salamhp@uindy.edu or the student investigator at henderzahsmasonj@uindy.edu. You may also contact the Human Research Protections office by either emailing hrpp@uindy.edu or calling 1 (317) 781-5774 or 1 (800) 232-8634 ext. 5774. CONSENT: Please select one of the options below: o YES, I consent to participating o NO, I do not consent to participating Skip To: End of Survey If KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS This survey is part of a study through the Un... = NO, I do not consent to participating End of Block: Informed Consent Start of Block: Demographics ABPTS credentials As it relates to the American Board of Physical Therapy Specialties specialization certification, indicate whether you are: o Already certified o In the process of certification o Planning to pursue certification o Not planning to pursue certification Skip To: APTA membership If As it relates to the American Board of Physical Therapy Specialties specialization certification,... = Not planning to pursue certification ABPTS certification What certification(s) do you have or are pursuing? ________________________________________________________________ WELLNESS INCLUSION IN PHYSICAL THERAPY APTA membership Are you a current member of the APTA? o YES o NO Other credentials Please list any other professional credentials you consider relevant. ________________________________________________________________ Gender What is your gender? o Male o Female o Non-binary / third gender o Prefer not to say Age What is your age? o Under 30 o 30-39 o 40-49 o 50-59 o >60 63 WELLNESS INCLUSION IN PHYSICAL THERAPY Education Indicate your educational background. Check all that apply. Associate's Degree Bachelor's Degree Clinical Master's Degree Academic Master's Degree Professional Doctorate Academic Doctorate Other educational preparation Skip To: Other education If Indicate your educational background. Check all that apply. = Other educational preparation Skip To: Experience If Indicate your educational background. Check all that apply. = Associate's Degree Skip To: Experience If Indicate your educational background. Check all that apply. = Bachelor's Degree Skip To: Experience If Indicate your educational background. Check all that apply. = Clinical Master's Degree Skip To: Experience If Indicate your educational background. Check all that apply. = Academic Master's Degree Skip To: Experience If Indicate your educational background. Check all that apply. = Professional Doctorate Skip To: Experience If Indicate your educational background. Check all that apply. = Academic Doctorate Other education Please note other educational preparation not listed previously ________________________________________________________________ 64 WELLNESS INCLUSION IN PHYSICAL THERAPY 65 Experience How many years have you been in professional practice? o 1-5 years o 5-10 years o 10-20 years o 20-30 years o >30 years Practice Setting Please select your primary practice setting o Health system or hospital-based outpatient facility or clinic o Private outpatient office or group practice o Other outpatient setting not listed Skip To: Setting If Please select your primary practice setting = Other outpatient setting not listed Skip To: Practice location If Please select your primary practice setting = Health system or hospital-based outpatient facility or clinic Skip To: Practice location If Please select your primary practice setting = Private outpatient office or group practice Setting Please describe your practice setting ________________________________________________________________ WELLNESS INCLUSION IN PHYSICAL THERAPY 66 Practice location Please note your professional practice location within the United States o Northeast (Connecticut, Maine, Maryland, Massachusetts, New Jersey, New Hampshire, New York, Pennsylvania, Rhode Island, Vermont) o Midwest (Iowa, Indiana, Illinois, Kansas, Nebraska, N. Dakota, Ohio, Michigan, Minnesota, Missouri, S. Dakota, Wisconsin) o Southeast (Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, N. Carolina, Puerto Rico/Virgin Islands, S. Carolina, Tennessee, Virginia, W. Virginia) o Southwest (Arizona, California, Hawaii, Nevada, New Mexico, Oklahoma, Texas, Utah) o Northwest (Alaska, Colorado, Idaho, Montana, Oregon, Washington, Wyoming) o Multiple regions Practice location How would you describe your primary practice location o Rural o Suburban o Urban o Other WELLNESS INCLUSION IN PHYSICAL THERAPY 67 Patient care time How much time do you typically receive for new patient evaluations? o 30 minutes or less o 31-45 minutes o 46-60 minutes o >60 minutes Patient care time How much time do you typically spend providing face-to-face care for patients in the outpatient setting each week? o <10 hours per week o 10-20 hours per week o 21-30 hours/week o >31 hours per week Patient demographics How often do you provide care in the outpatient setting for individuals aged 1944? o Never o Rarely (>0%-25%) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) WELLNESS INCLUSION IN PHYSICAL THERAPY 68 Patient demographics How often do you provide care in the outpatient setting for individuals aged 4564? o Never o Rarely (>0%-25%) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) Patient demographics How often do you provide care in the outpatient setting for individuals aged 6584? o Never o Rarely (>0%-25%) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) WELLNESS INCLUSION IN PHYSICAL THERAPY 69 Patient demographics How often do you provide care in the outpatient setting for individuals aged >85? o Never o Rarely (>0%-25%) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) Practice Are health promotion, wellness, and disease prevention in your scope of practice in your practice jurisdiction? o YES o NO o Maybe, I'm not sure End of Block: Demographics Start of Block: Dimensions of HPWP Beliefs Do you believe you play a professional role in screening for physical activity/exercise for patients symptoms/impairments? o Yes o Maybe o No WELLNESS INCLUSION IN PHYSICAL THERAPY Beliefs Do you believe you play a professional role in screening for nutrition for patients symptoms/impairments? o Yes o Maybe o No Beliefs Do you believe you play a professional role in screening for tobacco smoking for patients symptoms/impairments? o Yes o Maybe o No Beliefs Do you believe you play a professional role in screening for sleep hygiene for patients symptoms/impairments? o Yes o Maybe o No 70 WELLNESS INCLUSION IN PHYSICAL THERAPY Beliefs Do you believe you play a professional role in screening for stress management for patients symptoms/impairments? o Yes o Maybe o No HPWP education How would you describe your education associated with health promotion, wellness and disease prevention topics o Fairly thorough o Moderate o Minimal o None HPWP education Where has most of your health promotion, wellness, and disease prevention education come from? o Professional degree curriculum o Continuing education/post-professional o Both professional degree curriculum and post-professional/continuing ed o I have no formal experience with this content 71 WELLNESS INCLUSION IN PHYSICAL THERAPY 72 Patient impairments What percentage of your patients have the following health concerns? Cognitive impairment Most 76-100% ... I don't know Fatigue Most 76-100% ... I don't know Depression, anxiety, stress disorders or emotional side effects Most 76-100% ... I don't know Gait instability, balance impairments, vestibular dysfunction, falls Most 76-100% ... I don't know Gastrointestinal disorders (nausea, vomiting, diarrhea, bloating) Most 76-100% ... I don't know Muscular weakness Most 76-100% ... I don't know Osteoporosis Most 76-100% ... I don't know Acute pain Most 76-100% ... I don't know Peripheral neuropathy Most 76-100% ... I don't know Recent surgery Most 76-100% ... I don't know Range of motion restriction Most 76-100% ... I don't know Sleep disorder Most 76-100% ... I don't know Chronic pain Most 76-100% ... I don't know End of Block: Dimensions of HPWP Start of Block: Professional Wellness Practices (practice behavior over the past 2-4 weeks) WELLNESS INCLUSION IN PHYSICAL THERAPY HPWP inclusion How often did you discuss or screen for physical activity/exercise participation during the initial visit (evaluation) with the patient? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) HPWP inclusion How often did you address nutrition (including screening or referral) during the initial visit (evaluation) with the patient? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) 73 WELLNESS INCLUSION IN PHYSICAL THERAPY 74 HPWP inclusion How often did you address tobacco smoking (including screening or referral) during the initial visit (evaluation) with the patient? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) HPWP inclusion How often did you address sleep hygiene (including screening or referral) during the initial visit (evaluation) with the patient? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) WELLNESS INCLUSION IN PHYSICAL THERAPY 75 HPWP inclusion How often did you address stress management (including screening or referral) during the initial visit (evaluation) with the patient? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) HPWP Inclusion How often did you include ALL 5 topics, (physical activity, nutrition, tobacco smoking, sleep hygiene and stress management) as part of discussion/screening or referral, during a patients initial visit (evaluation)? o Never o Rarely (>0-25%) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) WELLNESS INCLUSION IN PHYSICAL THERAPY 76 Barriers Which of the following potential barriers have impacted your ability to incorporate health promotion and wellness screening, interviews, interventions, and activities in patients? (Check all that apply) Economic limitations of patient Lack of ability/support from interdisciplinary team to facilitate referrals after needs identified Lack of authority at work Lack of community programs Lack of therapists knowledge/education Lack of employer support Lack of experience Lack of materials/resources Lack of patient interest Lack of personal interest Lack of reimbursement Lack of research evidence Lack of time during treatment My job does not require it Wellness not an essential practice responsibility in patient care Wellness promotion is not effective WELLNESS INCLUSION IN PHYSICAL THERAPY 77 Wellness promotion is not worth cost/effort Work environment is not suitable None of these barriers have impacted my ability to provide health promotion and wellness services in my care of patients. Other End of Block: Professional Wellness Practices (practice behavior over the past 2-4 weeks) Start of Block: Personal wellness Physical activity How often do you engage in achieving physical activity/exercise recommendations (150+ minutes/week of moderate exercise, 2 days/week of resistance training)? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) WELLNESS INCLUSION IN PHYSICAL THERAPY Nutrition How often do you engage in achieving nutritional recommendations? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) Tobacco smoking How often do you engage in achieving tobacco smoking recommendations (abstinence)? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) 78 WELLNESS INCLUSION IN PHYSICAL THERAPY Sleep hygiene How often do you engage in achieving appropriate sleep hygiene (7-9 hours per night)? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) Stress management How often do you engage in achieving stress management? o Never o Rarely (>0-25% of the time) o Occasionally (>25%-50%) o Often (>50%-75%) o Routinely (>75%) End of Block: Personal wellness 79 WELLNESS INCLUSION IN PHYSICAL THERAPY Appendix C Informed Consent 80 WELLNESS INCLUSION IN PHYSICAL THERAPY 81 Appendix D Tables for Results Table 1 Sociodemographic Characteristics of Respondents Variable Total % ABPTS certification OCS GCS NCS SCS None 22 3 1 2 17 48.9% 6.7% 2.2% 4.4% 37.8% Gender Male Female Prefer not to say 12 32 1 26.7% 71.1% 2.2% Age Under 30 30-39 40-49 50-59 >60 7 13 10 12 3 15.5% 28.9% 22.2% 26.7% 6.7% Highest level degree Clinical masters Academic masters Professional doctorate Academic doctorate 5 3 30 7 11.1% 6.7% 66.7% 15.5% Practice Setting Health system/hospital-based outpatient facility Private outpatient/group practice Other 15 25 5 33.3% 55.6% 11.1% Practice location region Northeast Midwest Southeast Southwest Northwest Multiple regions 8 16 10 3 5 3 17.8% 35.5% 22.2% 6.7% 11.1% 6.7% Practice location Rural 7 15.6% WELLNESS INCLUSION IN PHYSICAL THERAPY 82 Appendix D Tables for Results Table 1 Sociodemographic Characteristics of Respondents Suburban Urban Other 19 17 2 42.2% 37.8% 4.4% Years in practice 1-5 12 26.7% 5-10 7 15.5% 10-20 10 22.2% 20-30+ 16 35.6% Abbreviations: ABPTS= American Board of Physical Therapy Specialties; OCS= Board-Certified Clinical Specialist in Orthopaedic Physical Therapy; GCS= Board-Certified Clinical Specialist in Geriatric Physical Therapy; NCS= Board-Certified Clinical Specialist in Neurologic Physical Therapy; SCS= Board-Certified Clinical Specialist in Sports Physical Therapy. WELLNESS INCLUSION IN PHYSICAL THERAPY Appendix D Continued Tables for Results Table 2 Characteristics Reported by Physical Therapists Median Age of PT 40-49 PT years in practice 10-20 Patient evaluation time 46+ minutes Patient demographics (age) -19-44 occasionally -45-64 -65-84 often occasionally -85+ Inclusion of topic -PA rarely often or frequently -Nutrition -Tobacco cessation occasionally never or rarely -Stress management occasionally -Sleep occasionally -All topics (holistic) never or rarely Abbreviations: PA= physical activity; PT= Physical Therapist 83 WELLNESS INCLUSION IN PHYSICAL THERAPY 84 Appendix D Continued Tables for Results Table 3 Relationships Between Beliefs About Inclusion of a HPWP Topic and Inclusion in Patient Care Inclusion of Topic during Physical Therapy Care Beliefs about Inclusion (df = 2) Physical Activity Inclusion of All Categories During Care Cramers V X2 Cramers V X2 .081 0.29 .091 0.37 Nutrition .333 4.99 .161 1.16 Tobacco Cessation .375 6.34* .206 1.97 Stress Management .347 5.42 .134 0.80 Sleep .387 6.75* .322 4.67 *p < .05 WELLNESS INCLUSION IN PHYSICAL THERAPY 85 Appendix D Continued Tables for Results Table 4 Relationships Between Depth of HPWP Knowledge and Inclusion of HPWP in Patient Care (df = 6) Cramers V X2 Physical Activity .290 7.59 Nutrition .284 7.24 Tobacco Cessation .218 8.27 Stress* .402 14.54 Sleep* .422 16.00 All Categories .165 2.46 Depth of Knowledge and Inclusion * p < .05. WELLNESS INCLUSION IN PHYSICAL THERAPY 86 Appendix D Continued Tables for Results Table 5 Relationships Between HPWP Personal Behaviors and Inclusion of HPWP Topics in Patient Care Inclusion of Topic in Care Inclusion of All Categories in Care Cramers V X2 Cramers V X2 Physical Activity (df=8) .402 14.53 .351 5.53 Nutrition (df = 8) .469 9.89 .421 7.99 Tobacco avoidance (df = 4) .199 1.78 .140 0.88 Stress management (df = 8) .517 12.02 .260 3.04 Sleep (df = 8) .373 6.26 .350 5.50 Personal Behavior of Physical Therapist *There are no significant relationships of HPWP personal behaviors of physical therapists with inclusion of HPWP topics in care WELLNESS INCLUSION IN PHYSICAL THERAPY 87 Appendix E Figure 1 Rates of HPWP Topic Inclusion in Physical Therapist Outpatient Practice 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Physical Activity Sleep Stress Routinely > 75% of the time Often (>50-75% of the time) Rarely (>0-25% of the time) Never Nutrition Tobacco cessation Occasionally (>25-50% of the time)  ...

... 1 The Role of Social Media's Influence on Public Opinion Marwah Alrifai University of Indianapolis December 2021 2 Table of Contents CHAPTER 1. INTRODUCTION AND RESEARCH QUESTION ............................................................ 3 RESEARCH QUESTION .................................................................................................................................... 3 EXPLANATION AND JUSTIFICATION OF CASE STUDY ......................................................................................... 4 CHAPTER 2. LITERATURE REVIEW .............................................................................................5 SOCIAL MEDIA ............................................................................................................................................................... 5 FAKE NEWS ...................................................................................................................................................... 6 SOCIAL MEDIA ENGAGEMENT ......................................................................................................................... 7 THEORIES ........................................................................................................................................................ 8 WEAPONIZATION OF SOCIAL MEDIA ................................................................................................................ 9 CHAPTER 3. METHODOLOGY ...................................................................................................... 13 CASE STUDY & METHODOLOGY ................................................................................................................................ 14 CHAPTER 4: ANALYSIS ................................................................................................................ 18 CHAPTER 5: CONCLUSION ........................................................................................................... 34 References ................................................................................................................................... 38 3 Chapter 1. Introduction and Research Question Over the years, social media has found a way to penetrate into common people's lives and became a prominent source of information about different fields and entertainment. These technological changes had lured important people to identify social media as an interface to interact and share ideas with common people and to understand their perspective. Political leaders and government officials realized the impact, these social media platforms capitalize on their engagement with the common public. This made politicians and election officials enter in an era where campaigns and propagandas were allowed to be carried through social media platforms and reach out to the public in a more effective and improvised manner. In the era of social media, electoral processes are increasingly centered on social media. Thus, platforms such as Facebook, Twitter, and YouTube have a significant influence on how political content is created, distributed, and consumed. As time passes, the platforms collect unprecedented amounts of information about their users, which includes information related to their online activities, posts, shares, reads, likes, comments, keystrokes, movements, location, interests, etc. Consequently, social media platforms along with the devices they operate on, aggregate virtually every aspect of modern life. Globally, social media plays an important role in democracy and democratization processes. These social media outlets make democracy more challenging. It is a reflection on the hubris of good intentions, and an ideology claiming that computer code has all the answers the world has to offer. And it illustrates how "social media" has contributed to deteriorating democratic culture internationally, from the facilitation of Russian interference in support of Donald Trump's campaign to the exploitation of its platforms. In modern times, many people become accustomed to the complex set of practices that exist involving live broadcast media and social media and switching between one medium and the other during the most important public events. This poses the question of whether these practices influence public opinion and political engagement. The impact of the vernacular narratives about the media on public opinion that is associated with media technologies, then influencing the way we interact with them. Technological determinism is a persistent and influential narrative presenting technology as the cause of social change. The objective of this study is to examine The Role of Social Media's Influence on Public Opinion. This issue will be studied from the perspective of the 2016 US presidential election. An 4 examination of how and to what extent social media influenced public opinion in the 2016 U.S. presidential election is discussed in this paper. In the scope of my analysis, I propose to investigate cases in which social media stories and groups that support certain views have exerted a direct influence on perceptions of election-related issues and figures. This paper seeks to demonstrate the difference between mainstream news sources (newspapers, TV, cable) and social media, through the content, perspectives, and ideas influencing elections. In spite of the fact that all presidential elections are worthwhile, the 2016 election in the United States was especially notable. Mainstream media predictions that Hillary Clinton would become president collided with Donald Trump's election as the 45th president of the United States of America. There were plenty of intriguing surprises even during the primary elections, as Hillary Clinton faced an enormous challenge from Donald Trump. Throughout the campaign, media outlets covered the candidates from different angles but the way that they were portrayed varied from one media outlet to another. The partisan composition of the public's mediated and interpersonal interactions and information sources regarding the 2016 election. In the media, partisan views are selectively displayed, and it is more common to use like-minded media and then to meet opponents' viewpoints. The publicizing of deceptive information attracted sharp recognition to the paths in which media standards and fabrications can be orchestrated by political leaders, often in methods that make conventional journalists complicit in the spread and addition of emotionally alluring (Phillips, 2018). The dissemination of deceptive and malformed data is an old-school tactic used to synthesize and continue to influence the movement, hindering the possibility of calm political discussions. The Russian agency, which intended to deliberately intrude in the 2016 US Presidential election (Summers, 2018). In the American freedom of speech concept, it is presumed that misinformation and disinformation are the factors of the marketplace of ideas. In countries such as the United States, Russia, India, and other, external agencies are prepared to diffuse weapons of mass inducement mainly on defenseless nationals, with vulnerabilities and protruding atmosphere provided to a higher degree by social media outlets. This makes the pivotal character of data warfare in present day strife much more visible and compelling (Oates, 2020). 5 Chapter 2. Literature Review In light of recent criticism directed at dominant social media monopolies such as Facebook, Google, WhatsApp, Instagram, Twitter, TikTok, and other similar services. Furthermore, how do they affect our information society as a whole, including what is the legitimacy of these platforms in improving social mobility and fostering an inclusive society? It is crucial to answer these questions that do not receive enough attention from the public and politicians, while mainstream media only addresses them marginally. Many factors are responsible for this lack of attention. There is an enormous amount of lobbying power wielded by social media companies. The connection between social media firms' interests, and those of the media in general. Inability of journalists to fully comprehend the underlying platforms. Perhaps most important, the politicians' unwillingness to publicly speak out against the business models of tech giants, a lack of adequate political support for protecting citizens' privacy (Berghel, 2020). However, maintaining the individual data would not be necessary in order to achieve the primary research goal which was a methodology developed for the psychographic profiling individuals on social media and other indicators. The team at Cambridge Analytica realized they could combine this information with various data sources including social media platforms, web browsers, and a total of 5,000 information points are gathered on 230 million US adults, including purchases, voting results, and more. It was through this research that Cambridge Analytica was able to "micro-target" each consumer or voter which potentially expose participating Facebook users or their friends to certain security risks (Isaak & Hanna, 2018). During the post-industrial era, research has been conducted on the participation of youth in politics as a microcosm for the discussion regarding the evolution of political engagement. The participation of the public in traditional democratic processes such as voting, joining political parties, and joining unions is declining in many developed countries, although the effects of this decline are still being debated. A major driving force behind the proliferation of these new forms of political action and expression has been the technological revolution brought on by the Internet. A major factor responsible for the effectiveness, speed, and ease of communication and information flows has been the rapid and ongoing development of the Internet. Several key aspects of political engagement have been affected as a result (Keating & Melis, 2017). 6 Searching for information on the Internet and via social media, specifically news, has been associated with a higher level of political engagement. However, social media are used for a wide range of purposes beyond finding information, the role of social media in influencing new models of citizenship is becoming more apparent among younger generations. The literature in this area has demonstrated the importance of political expression in influencing people to participate in politics (Gil de Ziga et al., 2014). In terms of political significance, the increase in the use of online social networks ("social media") is rooted in American political thought and reflects the importance we attach to these social networks. The American democratic process is founded on the notion that sovereignty is exercised by the people through republican forms of government, or rather, as James Madison stated, through "schemes of representation." (Wagner 2010). In this process, systems of information communication play an important role because they present information in a structured manner and enable people to understand it. In the United States, social media changes the political calculus by influencing who controls information, how it is consumed, and how it is distributed. The findings of the study reveal that traditional media outlets continue to play an important role in amplifying and disseminating particular political claims e.g., Trump's immigration stance. Both seasoned and novice campaigns flagged how these techniques were overpowering their attempts to attract public attention in the very crowded presidential field (Oates & Moe, 2017). Social media represent a fundamental change in the existing system structures and landscape of media for the communication of political messages. It establishes a multidimensional and largely unprecedented way for opinion leaders, politicians, and citizens to interact with one another. It is not new that technological advances are taking place, but what is new is what they are becoming. It is important to recognize that social media is not just another advancement in technology, but rather it represents an entirely new paradigm in the way people interact with each other. Rather than relying on dominant media sources to explain a limited amount of information, today's networkers are engaged on not only the news itself but also with entire communities of friends and associates without regard for borders or geopolitical boundaries. There is no gatekeeper or editor for this social network, and it's governed by new codes of conduct that are only now being devised (Gainous & Wagner, 2014). 7 It is no longer surprising that social media has become increasingly influential over politics, to such an extent that it has become a powerful tool for connecting individuals based on common political opinions. As discussed by Farrar-Myers and Vaughn (2015) there is no doubt that social media have played an important role in the last few social movements by allowing politicians to mobilize disenchanted groups of people. Several factors contribute to a candidate's political strategy, including the past performance of the candidate, government regulations, and the way in which the candidate communicates in their platform. In a presidential campaign, policies and intentions for the United States of America are emphasized, along with how those policies will be implemented. The Constitution asserts that candidates should remain true to their values, at the same time, they should be creative when it comes to engaging the public throughout a campaign. A platform cannot be translated digitally into a digital format because human interaction cannot be replicated in the digital form. Politicians have incorporated social media marketing into their campaigns and have seen great success as a result. Campaigning via social media is opening up new avenues for candidates and extending the scope of politics. There is more direct engagement between candidates and voters than ever before, but at the risk of their judgements and perceptions of each other (Nadler ,2016). Using social media to create original content and build a strong brand is the goal of social media advertising. Through the use of different social media platforms, candidates can directly engage with and influence voters. In an era when digital technology is so prevalent, voters are unable to find a common ground that allows for human communication while media mobilization at the same time. Voters form perceptions of the candidate and other political issues based on social media activity. Accordingly, voters' interest in politics could be dampened or rekindled depending on whether or not they participate in online political activity. Fake news The issue of fake news has been a focus of attention since the U.S. presidential election in 2016. Before making any further progress, it is important to define the term fake news clearly. There is something controversial and complex about fake news issues because there are wide 8 variations in the way it is presented to the public debate nowadays. When it comes to "fake news," it can be challenging to distinguish between hoaxes, state-sponsored propaganda, manipulated content, or conspiracy theories. In order to clarify this terrain of thinking, scholars have endeavored to offer definitions of the concept. In addition, this can also be stated as information that has been deliberately fabricated and disseminated with the intention to deceive and mislead others into believing falsehoods or doubting verifiable facts (McGonagle, 2017, p. 203). Throughout recent years, "fake news" has become increasingly popular. This term is now being used both in academic discourse and in the media. This terminology is used in mainstream speech to indicate false stories, to stigmatize information presented from opposing perspectives, in some cases, even to discredit critical reports published by media organizations (Tandoc et al., 2018). For some time, fake news has been classified in broader terms and has been evaluated based on either the authenticity or the source of information (Shu et al., 2017). As a result of the 2016 U.S. presidential election fake news has been associated with both credibility and intent. Fake news, on the other hand, was defined as news articles that are intentionally false and have the potential to mislead readers (Allcott & Gentzkow, 2017). A number of negative consequences can be observed at both individual and societal levels due to fake news sources, such as price fluctuations in stock, all-out epidemics, and events related to the 2016 United States presidential election (Allcott & Gentzkow, 2017). In order to combat the damages caused by false news, many public discussions have taken place concerning potential solutions-such as the detection of false news by artificial intelligence technology, the fact-checking process by humans, and empowering the public through information literacy education (CHEN et al., 2021). Although it is not clear to what extent stories of this nature contributed to the pattern of character attacks during the 2016 campaign, there were a lot of disagreements and accusations of character flaws among the candidates. Both candidates criticized each other's character flaws and questioned each other's abilities. Despite this, there is evidence indicating that fake news propagated by media outlets in the 2016 election cycle has a partisan bent, as 17 out of 20 stories reported on fake news favored Trump, while mainstream news stories supported Clinton more frequently (Stabile et al., 2019). The media portray women in a more negative light than men, the 9 Clinton campaign was unique, particularly in its aspects related to, it shed light on several aspects of gender bias and sexism that complicate women's election campaigns. As an example of fake news, several social media platforms linked the rumor that Hillary Clinton was involved in a child sex ring with actual news stories about new Clinton e-mails. According to a number of Facebook posts in October 2016, Clinton was believed to be a member of an international sex ring enslaving children. It was shared on Twitter and soon became viral as a result of automated bot networks (centralized groups of Twitter accounts) and repackaged by Trump supporters, among whom were several members of the campaign (Robb, 2017). Although the rise of fake news is concerning today, its context must be considered. Increasingly, media and news ecosystems are experiencing radical changes, mainly due to the emergence and rapid development of the Internet, a phenomenon that continues to have profound effects on the media and news sector. Factors that have changed the game in fake news production include the sophistication of its production; the scale at which it is created, how rapidly and effectively it is disseminated. As a result of technological advances, a broad range of actors are now able to produce content, especially fake news, in a variety of forms and to disseminate it widely and rapidly. Examples of this content include text, photos, videos, memes, bots, gifs, etc. (McGonagle, 2017). Social Media Engagement Modern media technologies have enabled citizens to access information regarding their elected representatives, government budgets at the national and state levels and even the judicial information. In uncertain times, they can rely on this method to make smarter and more informed decisions. Research into civic political engagement is at the core of political science and focuses on voting behavior and those forms of political participation that are more traditional: demonstrations, direct contact with elected representatives, or participation in political organizations. This core element of a democratic society remains the same, but discussions are emerging about new forms of participation introduced by the digital age (Koc-Michalska et al., 2016). 10 The Cambridge Analytica scandal in 2017 and 2018 taught us a very clear lesson that social media sites such as Facebook, Twitter, Instagram and other sites collect considerable data about public behavior. Participation activities on social media, no matter how big or small, will leave a digital imprint. This implies that mobilizations generate digital trails, which can be harvested to create large-scale data that is subsequently available for retrieval and analysis through appropriate algorithms (Karpf, 2019). According to the results of Feezell (2017), this finding has two interesting implications. First, while the current media climate enables viewers with low levels of political interest to avoid news and information related to politics, a decent amount of political information is likely to be transmitted through social media to the uninterested in the absence of selective avoidance. On the other hand, this study demonstrates that exposure to inadvertent political information shared through social media affects the perceived salience of issues. Second, In light of these findings, it appears that the traditional media may not be as marginalized in the post broadcast environment as previously believed. While their capability to reach a wide audience via social media is influenced by factors such as network structure, usage patterns, and social media algorithms. Theories Agenda-setting theory In 1922, Walter Lippmann published Public Opinion, which addressed agenda-setting. According to Lippmann, the mass media act as a connection between the public's perceptions of the world and the events that occur in it. In 1972, McCombs and Shaw introduced the concept of media agenda-setting by adding a new element on what to think about which focused on analyzing public agendas. Given the possibility that media-public agenda correlations could also be interpreted as causation in the reverse direction when dealing with journalists, In effect, public interest is anticipated or estimated, but that premise was rejected as implausible. It is no longer accurate to assume that media influences the public agenda based on the assumption of Agenda-setting theory. Social media platforms have provided new opportunities for public engagement. Most Americans utilize social networking platforms, enabling them to share whatever they may be thinking with their friends, family, and complete strangers to view (Perrin, 2015). Traditional media and social media are the main types of media sources. Traditional sources 11 of news, particularly cable news programs, have been around for many years; yet they tend to be older and less interactive than modern platforms that are only available on internet-connected devices. Due to the widespread use of smartphones, people have been able to access social media platforms at the tip of their fingers (Smith, 2015). Spiral of silence theory The spiral of silence (SOS) is a theory proposed by Noelle-Neumann (1974) that claims that individuals' willingness to express their opinions is influenced by perceptions of opinion. There is a limited extent to which the SOS can be observed in online environments. For instance, political polarization is increasing in the United States, using social media sites such as Facebook and Twitter to offer people the opportunity to select who they interact with on the internet, possibly resulting in the creation of a filter bubble that limits their exposure to information (Pariser, 2012). According to Flegenheimer & Barbaro (2016), there is an interaction between congruence in opinion, fear of isolation and willingness to express support for the candidate, which varies with face-to-face and online settings. Evaluating the SOS theory in the context of one of the most contentious US presidential elections in modern time. The term "Shy Trumpers. is used by Morning Consult in its analysis, those who are highly educated or engaged are much less likely to recommend Trump as president to another person. The data reveals that Trump does worse in phone polls than online polls among collegeeducated voters, whereas Clinton does better than both (Guilford, 2016). The difference between Trump and Clinton in SOS can be explained by their campaign rhetoric. At the time of his election campaign Donald Trump made remarks that commentators have characterized as sexist, racist, and otherwise defamed publicly. The casual supporter of Trump may have felt less comfortable expressing their support as they were afraid of being isolated, as referred as "Shy Trumpers" (Kushin et al., 2019). Weaponization of social media An increasing number of foreign disinformation campaigns use social media as a convenient tool for spreading disinformation. Recent examples of technology abuse and the manipulation of public discourse have become more apparent on social media, automated voting and other methods of Internet manipulation will not be restricted to a single election. 12 The 2016 U.S. presidential election was a watershed year for political propaganda spreading across social networks via computational techniques. Operators of the platforms did not comprehend the nature of the threat at first. The first time Facebook was asked about the potential contribution of the Russian government to the Trump campaign, the company described such foreign interference as negligible (Howard, 2021). Regulation of emerging online threats poses a serious challenge to lawmakers and regulatory agencies worldwide. A prime example might be the kind of weaponization of social media in regard to Cloud-based platforms that was demonstrated during both the U.S. Presidential election and the Brexit referendum in the United Kingdom (Cartwright et al., 2019). In light of this, the question arises as to whether social media could be changed in such a way that there would be a better balance between benefits and harms. Amongst the drawbacks of social media for society is the weaponization of social media to disseminate foreign misinformation, among other things (Oates, 2020). An essential reason for selecting the issue of social media influence on public opinion and analyzing it through the lens of the 2016 presidential election was the amount of time and effort spent in shaping the character and outlook of each candidate on the social media platforms and the contrasting election result. The 2016 presidential election marked an important advancement, where the manipulation and abuse marked an innovative milestone. In this election, the manipulation did not occur with the electoral process or the electoral vote ballots, but with the electors themselves and the social media platforms that served as an interface for information dissemination and social engagement. Many scholars have published their research regarding the 2016 election and why this was marked as one of the most controversial one. In this paper, I will be looking at the 2016 election with a different pair of lenses, where a line of social media outlets such as Facebook, Twitter, Google connected three different dots, such as Social media engagement, fake news and weaponization, which helped in reflecting the influence of these three factors on the public opinion and what measures were taken by each candidate's social media campaign personnel to accomplish their advancements. It is important to clarify that my thesis and analysis are not based on any theoretical paradigm. Particularly, the theories stated are merely examples of how the literature discusses social media and its effects. 13 Chapter 3. Methodology As a case study method, it involves intensive examination of a single unit or several subunits within one unit of analysis in order to gain an understanding of what happens specifically in that case in an effort to explain the overall pattern of cases. In this case study, I will focus on analyzing the 2016 election in order to highlight how powerful social media companies have played a major part in the process of modernizing democracy. In the United States to demonstrate just how important these companies are in relation to influencing public opinion. In terms of why this topic is so important, as illustrated above, the purpose of this paper is to provide a thorough analysis of how social media influenced the behavior of the public on a wide range of issues. Social media influence is multidimensional in nature and requires the combination of different levels of analysis. Both qualitative and quantitative data has been examined. To achieve this goal, I reviewed a range of scholarly analyses in order to identify those that most clearly articulate the topic of my thesis to elucidate the research question, role of social media's influence in public opinion. According to the Pew Research Center's analysis, the number of posts on Facebook and Twitter by Congress members has expanded significantly over the past four years. Based on the median number of posts a member of Congress made on Facebook during the first five months of 2020 compared to the same period in 2016, the member of Congress created 48% more Facebook posts and 81% more Twitter tweets. In addition to receiving substantially more engagement, these posts also received a substantial number of reactions, favorites, and shares, which measured in an overall sense (Shah et al., 2020). Perhaps the most critical aspect is to demonstrate the need for more than one theory to be consistent with the concept of impacting public opinion. It is deliberate to establish that certain criticalities regarding mass media and social media must be conveyed in order to support a specific hypothesis. In other words, public opinion is shaped in enormous part by the media outlets that encompass social media, which affects the issues, which are deemed most important at given times. In addition, focus on certain details of these issues. Thus, a theory of agenda-setting, focuses on the combined influence of the media on public knowledge and understanding of critical events. 14 In the United States, political polarization is increasing, resulting in social media platforms such as Facebook and Twitter allowing users to choose who they interact with online, which may result in a filter bubble that limits exposure to certain information. Using reference groups in comparison to majority opinion as a predictor of one's willingness to express an opinion is of critical importance. The public may not be able to make a wise decision based on what they know or based on their personal opinions during democratic elections. Spiral of silence, (SOS) theory suggests that an individual's willingness to express opinions is dependent on the perception of an opinion climate. According to the SOS, FOI is the phrase "fear of isolation" considered one of the key mechanisms explaining why people repress unpopular opinions. In a democratic society, the theory has significant implications. In analytical sections, the analysis will examine how social media was used by both domestic and international actors to influence American elections, each of which pertains to a different aspect of the research question and the study case. The first domestic level will focus on the influence of fake news and the gender bias against women in politics. The campaign between Hillary Clinton and Donald Trump in the 2016 U.S. presidential election was particularly characterized by fake news and raucous gender discussion. Just prior to the 2016 election Mainstream media stories received fewer views than fake news stories on Facebook During the period, 8.7 million people shared, responded, and commented on fake news on Facebook, compared with 7.3 million for mainstream media (Silverman, 2016). Nevertheless, this highlights how common it is for fake election news to spread, as the social media platform has been criticized for allowing false content to propagate throughout the 2016 presidential campaign. The second level of analysis will examine through the perspective of locals and candidates on how social media was involved, along with some statistics and analyzable charts demonstrating the increasing engagement of mass media and social media during and before elections. The use of social media during election campaigns has become one of the most prevalent methods of communication between candidates and the public. The Internet has enabled platforms such as Facebook and Twitter to be used by candidates to raise their visibility over the public, mobilize their supporters, and influence public opinion. 15 Social media insights into the ways in which political communication is influenced by different platforms can be increased by adjusting the messages to the peculiarities of the various platforms. The way content is designed affects how and whether people pay attention to it, as well as how that content can be used by those audiences in the digital sphere. Researchers found that online campaigning largely maintained the status quo, with politicians largely replicating traditional messages and campaigning methods on their web sites and engaging with users in limited ways. In the third level of analysis, there will be a discussion of how foreign intervenors weaponized social media during election times. The design of social media makes it possible for foreign intelligence operations to identify key groups, penetrate and manipulate them. It has been shown that Russians were interested in creating wedge issues in the 2016 presidential election in order to polarize or manipulate Americans, and they had effective ways to do it via social media with Trump supporters. Social media today is a powerful tool for manipulation and polarization. There's no way to trace or curtail this kind of activity in a reasonable manner since it's ingrained deep down in the nature of social media. In the present day, it is so effortless to pretend as another, to earn trust, to polarize, and even to compel people to change behaviors. US companies like Facebook have created low-cost weapons for foreign adversaries, business logic and ingenuity have resulted in a weapon deployed against American citizens (Oates, 2020). According to Walter Lippmann's Public Opinion (1922), the media play an important role in connecting us in complex modern societies. Essentially, a civic agenda is a series of priorities that form the basis of a social or political system. Issue agendas in social media are shaped by citizens who are often passionate and long term interested in particular issues (McCombs et al., 2014). That social media companies emphasized social media market data and studies exerted by the trade outlets, and experts' own imported sightedness of communications and engagement on these platforms. Campaigns have been examined using information provided by these outlets digital ads regarding targeted audiences, tracking the involvement around their context such as funds raised, email list sign-ups, running experimental exams to see what content gave best outcome, reading comments and working to actively indicate generic advantages of these outlets 16 (Kreiss et al., 2017). Technological exercises are limited by actors views of what technologies can perform, features that conceptually frame what can be done using them, and patterns that evolve and arise in regard to technologies (Evans et al., 2017; Nagy & Neff, 2015). This indicates that when a post related to a campaign surface on twitter, actors following that campaign could view it in theory, in contradict to Facebook posts. Campaigns anchored this affordance to twitter in order to examine the impact of the message. Intended viewers and communicative patterns differ on these media outlets, and as such so do communications framed to target and proclaim to users of specified platforms. Capabilities differ as well, which indicates that political leaders take advantage of various platforms, and their defined abilities. For instance, the image or text capability of Instagram, compared to twitter providing dual screening and broadcasting experimental runs to scale engagement, versus the paths that Facebook provides in a broad list construct and standardizing. Lastly, it is evident that communication regarding campaigns on social media is embedded within a large set of policies. Campaigns incorporate various sets of social media outlets as a part of their larger goals based on the campaign's timing and as this kind of analysts need to be susceptible to policies as whole (Kreiss et al., 2017). Every now and then, the information broadcasted in the local media or newspapers cause and increase the generation of messages and debates on issues, but the agenda of these media or newspapers play a minor role in influencing people to share about these issues on social media. It is very infrequent that these citizens directly view these events and share about them on social media. This kind of reporting or sharing is done mostly when there are any sports events or political events taking place (McCombs et al., 2014). The social media issue agenda does initiate noise into our contemplation of media and people relationship, which can be defined in other words that, social media issue agenda is too transparent and has messages with largely diversified origins (Salman et al., 2016). Walter Lippman mentioned that the media has an interface for displaying images to the public. Presidential campaigns of 1968, 1972 and 1976 were investigated by McCombs and Shaw. In their research, they anchored on two factors: Awareness and information or data. Researching the agenda-setting working of the mass media, they worked on examining the connection between the important issues described by one faction of people and the exact context of the media interaction during the campaign. Mass media has exhibited a strong impact on what electors considered to be 17 the prominent concerns of the campaign, conclusions provided by McCombs and Shaw through their investigation. The primary conjectures and headlines are the fabrication of public awareness and context of significant issues by news media. There are two basic assumptions, which form the fundamentals for most of the research on agenda setting: First one Reality is not exhibited by the press and mass media; they refine and redefine it. And the second public tends to pursue those few issues as more significant ones, which are broadcasted and presented as important by the mass media or newspapers (McCombs & Shaw, 1972). Two distinctively compelling outcomes arise from this investigation. The main point is that even if the current media atmosphere empowers the public to have little political interest, political headlines and information can be avoided. The media probably eliminates selective avoidance and presents political data to the uninterested(Feezell, 2017). This is a common relevance with previous research by Messing and Westwood (2014) and Anspach (2017), which exhibits that social affirmation of news intends the public to read a part of the news, which they would willingly avoid. Many are attributed to the excessive selective contribution of information because it leads to the divided nature of people, the information-rich public is getting richer, and the poor are getting poorer information wise. However, it can be seen that subjection to incidental political data shown through social media, effect's issue's importance, though to the stage at which it may help to connect the segregation through extensive learning and understanding remains obscure. Second, these outcomes project that the mass media is not as insignificant in the post broadcast atmosphere as thought earlier, even though their approach to common people through social media outlets is largely interfaced by network design, circulation patterns, and social media algorithms. The outer perception of the current investigation may also be challenged by the character of the research design and especially, the origin of the news being shared. This investigation exhibits that an inoffensive university connected community can draw out an agenda setting impact through social media. However, as the origin was neither a known expertise nor a dedicated side leader, perspective can arise that the impact shown is not certainly a task of social media and the two-step stream of data, but rather is, excessively identical to that of data spread through a conventional news organization. As this may be a fact, investigation exhibits that solid social affirmations make the public more willing to attend to news (Messing & Westwood, 2014). In this 18 regard, information shared by a comparatively inoffensive source such as the group used here provides a moderate examination of agenda setting through social media. Agenda-building has overturned traditional assumptions regarding the salience of politics; it has shifted the focus from policymakers to policies itself. Theoretical and empirical findings presented an alternative approach to agenda building, the outside initiative model. The outside initiative model applies to situations where an outside group the formal structure of government first formulates a grievance, second seeks to spread interest in the issue to sufficient groups in the populace to gain public attention, and third, exerts enough pressure on decision makers to place the matter on their formal agenda for serious consideration (Cobb et al., 1976). The increasing prominence of nongovernmental organizations in raising public issues and competing for public attention has transferred the agenda building process to the people instead of the policymakers. The theory of agenda building, according to Denham (2010), outlined agenda building encompasses three distinct but overlapping approaches: research utilizing varying conceptualizations and foci, policy agenda building, media agenda building, and public agenda building. In terms of policy agenda building, the focus is on how issues are formulated, expanded upon, and subsequently included in the policy agenda. Media agenda building refers to how media agendas are developed which in turn is determined by institutional imperatives and negotiates with information sources. As a final point, public agenda building is referring to behavioral responses to interpersonal and mass communication. Chapter 4: Analysis The role of mass media and social media as well as their differing approaches in the 2016 election Politicians have instantly recognized the power of mass media in shaping public opinion. Concurrently with mass media well known as a major factor influencing public opinion, social media has gained prominence in recent years as a major factor. Media outlets like Facebook and Twitter, which are subsets of mass media, contribute to the shaping of opinion by enabling users to voice their opinions and provide information on a varied range of topics irrespective of prior 19 knowledge regarding the subject matter. In addition to the unfiltered generation of information and opinion, as well as the unique communication skills that social media provides, as a result of social media influence in the American political sphere, public opinion is further polarized. Information media is one of the key factors affecting public opinion. Throughout history, mass communication has been evolving, from the creation of newspapers to the invention of television. Sources of mass communication have always worked towards educating and informing people about current events; although these purposes are generally understood as the primary functions of mass media, other potential uses are also recognized (Robbins, 2019). Social media is now becoming increasingly popular as a news resource exponentially in the last decade. Among the reasons social media is being studied more is to find out if it has any effect on participation in politics. Also, social media may have an adverse effect on democracy and elections in the future. In the United States, the consumption of news online has increased, and Americans feel more informed as a result of online news sources (Purcell & Rainie 2014). Millennials and Gen Xers have become increasingly dependent on social media for political information in the past few years, surpassing traditional sources like cable television, local television, national broadcasts, and print outlets (Mitchell et al., 2015). A new set of issues associated with social media and elections emerged during the 2016 U.S. presidential election. Additionally, there has been an increased focus on social media and participation in politics due to the increased use of different platforms. With the 2016 election campaign, Donald Trump aggressively used Twitter to spread his messages, the dissemination and sharing of 'fake news' on social media like Facebook and Twitter, as well as attempts to influence the election via social media by entities outside of the U.S. (Curry, 2018). Even though she was the first woman to run as a presidential candidate for a major political party, Clinton did not receive the same level of excitement for her campaign as her previous predecessor, Barack Obama. First female presidential contender, Clinton had not done much more than reiterate what many voters already know. There was a negative reaction among the electorate toward Trump due to his own behavior, and not necessarily a consequence of something that Clinton did during the campaign (Blackbourn, 2016). In the 2016 presidential election in the United States, there were significant issues related to political campaigns and social media. A larger focus was also placed on social media and 20 political participation as a result of the increased use of different platforms. Followers' and politicians' opinions are frequently debated on social media. Comparatively, Clinton's campaign use of social media strategies demonstrated how professional election campaigns should run, in contrast to Trump's unprofessional method of political communication (Curry, 2018). First and foremost, Donald Trump used Twitter extensively during the campaign. By utilizing this strategy, Donald Trump was able to bypass the limitations of the mainstream media and communicate directly to the general public. Although his tweets reached beyond Twitter, the media regularly reposted, published or discussed them with commentaries or analysts. In this manner, the messages were communicated to Americans outside of Twitter and to people who did not follow Trump on Twitter if they used Twitter. Social Media Usage By Individuals Fake news During 2016, a significant portion of the debate on fake news conflated misinformation with disinformation. The term misinformation describes misleading information that is being created or disseminated without the intention to manipulate or mislead. In addition, disinformation is defined as the deliberate delivery of dishonest information to people for the purpose of confusing them or manipulating them (CHEN et al., 2021). In the context of an online environment, the major challenge may be identifying what factors are likely to make people susceptible to believing false content. Social media has been criticized as a potentially fertile ground for the dissemination of fakes. The congressional committees have requested Facebook, Google, and Twitter executives to provide information about their efforts to counter false news (Popken, 2018; Shaban et al., 2017). During his testimony to Congress, Facebook CEO Mark Zuckerberg said Facebook would use artificial intelligence to detect fakes. In addition to the content features from text and images, AI systems can identify social context features such as users, generated posts, and networks that could have an impact on the likelihood that a story is false (Shu et al., 2017). On the other hand, creators of false content usually change their methods of creating their content in order to improve the apparent authenticity and circumvent detection to make it more 21 difficult to detect. Incorporating these strategies results in a competition between technologies that can detect fake news and those that do not. False news is being combated with artificial intelligence, which has been characterized as a technological arms race (Cole, 2018; Susarla, 2018). Many countries have also established fact-checking agencies as concerns rise about the harm caused by false information. The use of artificial intelligence algorithms and fact-checking is not an effective way to combat fake news. As humans spread false information more often than robots, it is important to consider individuals when dealing with the threat of false information (Khan & Idris, 2019). Note: Pew Research Center conducted a survey of 1,002 adults in the continental United States between Dec. 1, 2016, and Dec. 4, 2016, in this report. Americans seem fairly confident that they can recognize fake news even though they sense these stories are causing confusion, with about four-in-ten (39%) feeling very confident about their abilities to spot false reports, and another 45% feeling somewhat confident. On average, about a third of Americans (32%) agree that they often view political news stories that are made up online. 22 Though it is difficult to determine the precise extent that people actually view news stories that have been fabricated, mainly because many people neither recognize nor distinguish false stories from the real ones. These statistics present broad perspectives on how the public views this type of story (Barthel et al., 2016). Based on the study, examined the characteristics of fake news articles content during the 2016 presidential election and how these content characteristics predicted social media outcomes. In general, these sites are less concerned with creating falsehoods out of thin air than with presenting a partisan interpretation of events. It is important to clarify that while some of this content contained fabrications, the majority of stories were mostly true but partisan, which was also the format that received greater resonance on social media. The 2016 election campaign was marked by partisan bias, clickbait, sensationalism, and misleading content that were used to target voters in which produced a media narrative that showed a negative view of Hillary Clinton. Thus, the results show that partisan, sensational, and fabricated content during the 2016 election was driven by antagonism towards the Democratic candidate, and not by support for the Trump campaign. An in-depth look at what aspects of content gain traction on social media. There is a strong correlation between Facebook and Twitter engagement levels and partisanship, with stories that provide a slant to either side of the political divide getting far more engagement than those that do not (Mouro & Robertson, 2019). Unsolicited accounts impact users by contributing to their assurances with fictitious data. During the 2016 United States presidential election, it was estimated by Policies that nearly 1.4 million twitter users interchanged information with Russian fake accounts, either by retweeting or liking posts or by becoming followers of these accounts, presuming that the data provided by these accounts is authentic without examining the reliability of accounts. If followers do not examine the reliability of the data spread by these fake accounts and take the information to be valid , this un-authentic information can hugely impact their perspective. When these followers or users reinforce their political perspective with fake information, it can end up in further divisiveness, as these users will slander perspectives from users with contrasting beliefs. This is because they are fed with the fake data, which in turn is influencing their choices. Fake accounts also strive to devalue person's belief networks, specifically using media bombs, whose functionalities can differ 23 from sending immediate replies to messages on twitter to ideologically endorsing or elevating desired websites on search engines on google (Robbins, 2019). It is also possible that heuristics are responsible for creating 'fake news', which is another recent concern linked to social media and politics. Social media platforms especially Facebook and Twitter have been criticized for spreading false and misleading information since the 2016 election. Essentially, it is a matter of whether this information can influence the outcome of an election in favor of one candidate over another. A combination of web referral data and a postelection survey was used by Allcott and Gentzkow (2017) in order to examine the issue. During the survey, respondents were presented with 15 election news headlines in which they were asked if they saw or heard about them. In addition, the headline was accompanied by a question asking if it was true or not. The 15 news headlines were selected at random from a database of true and false headlines from the campaign that had been created by the research team. The stories were equally weighted to include both beneficial and detrimental information about both candidates. Furthermore, the researchers included what they called "placebo" headlines so that it was possible to substitute candidates names. Several implications can be drawn from this research. The first thing I noticed was that social media engagement does not reward misinformation or sensationalism. These findings helped ease fears that fantastic, fabricated articles are getting more clicks than factual informative content. Hence, success stories such as "The pope shocks the world and endorses Donald Trump" represent outliers rather than the norm. Furthermore, there is a curvilinear relationship between social media outcomes and the strength of partisanship; that is, such a relationship peaks at a moderate degree of partisanship and then declines as stories become more biased. An effective method of fake news sites is to layer partisan, sometimes misleading, interpretations on top of true events, although there is a limit to the number of layers that can be applied (Mouro & Robertson, 2019). 24 Note: Pew Research Center conducted a survey of 1,002 adults in the continental United States between Dec. 1, 2016, and Dec. 4, 2016, in this report. According to Pew Research Center, the majority of Americans believe that fake news affects public opinion. A majority of U.S. adults (64%) feel that fabricated news stories make it difficult to find the basic facts about current events. A large proportion of Americans believe this opinion regardless of their income, educational level, political affiliation, or any other demographic characteristic. The results of this study were obtained from an online survey conducted from December 1 to December 4, 2016, of 1,002 U.S. adults1 (Barthel et al., 2016). As evidenced by the Pizzagate and Hillary Health Scare stories analyzed, two patterns are obvious: news fabrication and Photo manipulation. Pizzagate, which lacks any basis in fact, is an example of fabrication. while the Hillary Health Scare involved the manipulation of images of real events created a false narrative sensationalizing a brief, near-fatal episode that Hillary had experienced. In addition, when false information supports pre-existing beliefs, it could become deeply entrenched especially if it provokes moral outrage and is impossible to correct (Konnikova, 2018). A preliminary examination of the effect of 'fake news' on political decisions offers an interesting first indicator of the problem. Firstly, researchers found the rate of false recall to be significant when looking at placebo results. It has actually been found that recall of the placebo 25 headlines was identical to recall of false information headlines that were actually broadcast during the 2016 election. According to this analysis, the participants overestimated their recall of false information, which was likely much lower. Secondly, social media did not rank as their number one source of information about the election. Thirdly, a minority of Americans view the most popular fake news stories. Lastly, as for the effect of these stories on electoral outcomes, 0.7 percent of Clinton voters would have had to switch to Trump for it to have been effective. In other words, despite the concern about fake news being a dominant storyline in the 2016 election, its impact did not appear to be as severe as those narratives seem minimal at best (Allcott & Gentzkow, 2017). Partisanship has been demonstrated to be a significant predictor of whether individuals believe stories favorable to Trump and disparaging of Clinton. Therefore, finding that Republican stories constitute the vast majority of fake news could have a significant impact, since Republican voters could be more likely to believe them. According to some evidence, believing fake news has the potential to affect voter decisions (Blake, 2018). There is no clear indication that fake news played a role in the 2016 election, By a margin of less than one percentage point, Clinton lost to Trump in Michigan, Pennsylvania, and Wisconsin, states that are attributed to his victory, could lead one to rationally conclude that even a small amount of influence could have had an adverse impact on the election (Blake, 2018). Detecting the phrases incorporated with fake news headlines which unfairly criticize Hillary Clinton as infirm or predacious are in large numbers, compared to the phrases incorporated with Donald Trumps authentic scandals. Identically, Twitter flagged that certain phrases related to fake news of Clinton have been viewed nine times more when compared to the headlines in relation to actual news about Trump's disorderly conduct with women (Stabile et al., 2019). Women invariably get exposed to negative media coverage than men, and especially with the consideration that, though Clintons cabinet was distinctive, it exposed different perspectives in which female candidates running for office are far more complicated than male ones, because of gender stereotyping and sexism (Lawless, 2009). The observation regarding Pizzagate and the Hillary Health Scare, as proportion to the contesting, but the impropriety of Trump's recorded remarks in regard to women, directs that there can added repercussions against women for not complying with gender stereotypes which have 26 disbarred them from taking up designations of power and potentiality than for male who act poorly in abiding to gender norms of male prerogative and sexual superiority (Stabile et al., 2019). Social Media Usage by local / Candidates Social Media Engagement The essentiality of marked individual political leaders in molding social media strategies was seen across the interactions. Researchers stated that their social media use is been directed from the understanding of their leader: who they are in agreement of their public character, political history, strategy stances, thought process, temperament and comfort with social media engagements According to director of global politics and government outreach of Facebook Katie Harbath, demonstrated the relevance between political leader and social media personality in terms of "authenticity; I understand that political leaders who have most prosperity, and this is something we convey into them every time we converse with them, Be authentic, be real. Facebook employees indefinitely conveyed that political leader who were the most "legitimate" performed better in increasing their interactions on social media (Kreiss et al., 2017). The researchers demonstrated that they intend to use social media in a way that conveyed the authentic message of their political leaders. While Alexander (2010) convincingly states a point that viewers can never discriminate between authentic and contrived personality at the given measure of polity. investigators usually spoke regarding their candidates in terms of originality and pressured the importance to fit their own work to the voice of their political leaders. As a result of Facebook's wide potential audience, candidates were able to use it for a variety of purposes, such as advertising in online publications and engaging general and targeted audiences and attracting new supporters. As Caroline McCain, social media director stated: I think Facebook was the most important for us. Facebook was by far our largest channel. Facebook is the least insular. I think in DC a lot of people think Twitter is so important. Twitter was important, Donald Trump made it important. It still is not as big as Facebook. Its not; theres clearly industry data to speak to that. Facebook was our biggest source of traffic. It was our biggest source of engagement and so if we ever had something, Facebook always came first in my 27 mind in terms of where to go with something. It was our most diverse audience. It was, I think, on our Facebook page we actually had more men than we did women, which was unusual. Typically, thats reversed. We had a really great cross-section in terms of age and slightly more men than women (personal communication) (Kreiss et al., 2017, p. 9). Scientists illustrated the ways they could use the social media outlets to integrate needed and important information about followers, which they could then use for agendas of catering aimed advertisements to like-minded viewers. As Maiorana, of the Huckabee campaign, detailed, "Facebook stands as a most essential platform for us. It can be described as a place to construct, enhance data, with a slight of interaction that has been reviewed, we can specify like-minded audiences and target them, deliver messages to them, and fundraise from them" personal communication (Kreiss, 2016). Fisher et al. (2019) discovered that followers of political leaders are younger than average nationals and prefer to "listen plainly from a political party or leader than to have their perspectives refined by other individuals."(p.243). As a result of social media integration, actors who are less interested and knowledgeable about politics are more likely to engage with political news directly through these social media outlets than in traditional mass media (Shehata & Strmbck, 2018). Note: The Pew Research Center conducted a survey of U.S. adults between Aug. 31 and Sept. 7, 2020. 28 In a Pew Research study, of the 11 social media sites considered as regular sources of news, Facebook ranked first, with approximately a third (36%) of Americans claiming to get their news from it frequently. YouTube is the second most popular news source, where 23% of U.S. adults regularly view news. About 15% of U.S. adults use Twitter as a regular source of news. The voice of others plays a very significant role in this process. Voice is the prominent factor in Noelle Neumanns (1993) model of public opinion, and it sits at the most essential state of the spiral of silence theory. As people become more certain to believe that they hold the majority view (the large number of like-minded people), the greater inclined they are to voice their opinions. while, conversely, the opposite view becomes increasingly apprehensive about expressing one's opinion, resulting in increasing silence. According to Noelle-Neumann (1993), these are the processes by which public opinion is formed. The pollsters were not aware of last-minute changes in the choice of vote or those who decided at the last minute not to vote (Gelman & Azari, 2017). In this context, the Shy Theory or Lying refers to cases when respondents are unwilling to provide candid responses, as a result of a Spiral of Silence theory. In other words when voters refrain from expressing their opinions to pollsters. In addition, Clinton supporters appear to be more inclined to admit that to pollsters as compared to Trump supporters (Zeedan, 2019). Trump voters are shy people who are afraid to share their opinions for fear of judgment. Trump supporters as well as Democratic skeptics have thrown around the notion of a shy voter quite often (Stanton, 2020). According to Kreiss (2016), the one who demonstrated that Twitter is in use by social media campaigns for the consultation with viewers and mass media personnel during high profile gatherings. There is an already proven research pattern regarding the implementation of various media platforms for the outputs and activities based on political knowledge, political engagement, and polling (Prior, 2007), stating that regardless of the information read offline or online, it impacts the perspectives of the issue's prominence. The choice of the information at any given individual stage is refined by various media platforms, even during the times, where the primary place of origin of the information remains unchanged. Similarly, New York Times newspaper edition strongly conveys to the audience by bestowing journalistic cues and a healthy knowledge on "public affairs coverage, but viewers of its online impression were filtering the context in a style that caters their characteristic interests (Stier et al., 2018). 29 Media represents the second most important factor in forming a public opinion. Actors tend to blend their personal views and opinions with those, which are refined through the perceptions of social media into an undivided entirety that seems to have originated from their views and perspectives (Noelle-Neumann, 1993). There are two mechanisms that media works with. Primary, they construct common knowledge (Clemente & Roulet, 2015). Through intensifying the valency between the actors of a disintegrated audience, most of them, who do not interact (Moy et al., 2001; Cattani et al., 2008). As Adut (2008) emphasizes, we all consume similar things in the newspaper, while minding that, others are also consuming the identical content, which in turn construct generic commands about events. Also, the Media pledges mastery and saliency. There is a norm that whatever is produced in the media is capable of being told and, in being told, obtains contingency. Media poses an essential force for examining the climate of perspectives at the public level. Social media was used in 2016 US elections more than any other election in American presidential history. Many of the debates happening on the Television were co-presented by these social media outlets (McCabe, 2016).Innovative measures were aggressively being taken to scale the public opinion and send the related information to the campaign personnel. A new tool was launched during the GOP debate on 10 March by Facebook, which provided users with a platform to interact and contribute their perspectives in real-time, while the debate was happening, campaign people can see a graph of the results. The head of news, politics, and elections for Twitter Adam Sharp, stated that this is the first time in the presidential debates that people are exhibiting their emotions and they are being heard ( Ruskell, 2015). For instance, the study indicates that fear of isolation originates not specifically from the majority's perspective, but also from the perspectives of friends and family. By sharing information only with the set of people who are like minded and not paying attention to the set of people who think differently (Moy et al., 2001). " people no longer will have their quasi-statistical capability to appropriately examine perspectives of the environment"(Noelle-Neumann 1993: 124). In this scenario, the community breaks apart into two different groups, where every group emphasizes to be predominant over the other. "Two different persuasions" arise (Noelle-Neumann, 1993). Latest studies regarding the spiral of silence emphasizes that social individuals intend to portray themselves to the chosen media, and these platforms predominantly have a larger impact 30 on their prospect to convey their message (Tsfati et al., 2014). As the field media is intended at, and altered to, field actors, it tends to appear largely in regard and express a solid expression for conformity. The perspective they exert is viewed as a dominant one at the field level, specifically when they are recognized as the ones close to the essential actors of the field (Lounsbury & Rao, 2004).Thus, social media generates two antithetical impacts on the spiral of silence mechanism: individuals prefer data or news which is aligned with their previous views, but simultaneously, social media improve their possibility to cater to the majority's interest to increase their reach. However, it will stand as an open concern, if political leaders alter their media messages to the issue preferred by a huge audience or specific social media crowd. In comparison to Druckman and colleagues (2010), who disclosed long-established plan of actions on social media campaign sites, invariably assert that social media portray an inconsistent communication constellation: political leaders are confined in an interactive circumstance that deviate their postings to the issue preferences of their very active communication group. In the field of campaign resources, they have to designate their social media policies or protocols depending on the defined polling value of various outlets, which are connected not only to actors but also the kinds of engagement that experts trusted they supported. Pattern associates with and impacts how and if the content reached respective viewers, and what those viewers can predominantly do in a social media platform. Actors demonstrated that Instagram is highly volatile when it comes to political engagements, but it also lacks the capability to entertain foreign links, during most of the happenings, it did not act as an interface that invariantly transformed that political engagement in to polling impact and resources (Stier et al., 2018). Political leader's campaign messages, more than three contentions refer to social media that pose a campaign climate different from that of mass communication stages. Primary, we have to put into consideration that social media's essential use is not only to talk about the issues which are significant to masses, also to exert different other functions in election campaigns, For example, recognizing three responsibilities: escalating issue positions, exhibiting serviceable personality characteristics, and enhancing name recognition (Kobayashi & Ichifuji, 2015). Jungherr (2016) described a four-part classification which differentiates between organizational uses, efficient campaigns in the information space, resource collection and issuance, also for symbolic uses. A substantial part of effective online campaigning relies on the engagement of 31 followers, as well as the coordination of campaigns (Lilleker et al., 2011; Nielsen & Vaccari, 2013). Campaign has to normalize the complete range of platform features on social media outlets to provide a consistent message, showing that this is the "state of the art". Also, the demographic characteristics, political values, and interests of social media users differ significantly from the characteristics of a representative sample of national citizens. In relation, political leaders need to be indicated to discuss subjects. There are quite a few policies related to the internet that are more important to social media actors than to the people who watch mass media and report campaign events. In addition, leaders themselves use online media for a variety of purposes and appeasements (Hoffmann & Suphan, 2017; Marcinkowski & Metag, 2014). An important function of the internet is the convergence of public and private functions. The different works of campaigns and interactions with desirable audiences by a selected set of political leaders, can be assumed that the subject's importance in the messages leaders post on social media do not necessarily reflect the topic's relevance to mass audiences. On Twitter, most follower's accounts are public and easily reachable even for the users who do not have an account in twitter. Its application revolves around issues and the feature retweet provides the reach of political data beyond the direct follower through network and two step flow process (McQuaid, 2010). Social Media Usage By International Actors Weaponization of social media by Foreign Actors/states The report broadcasted in January 2017 by the Office of the Director of National Intelligence is one of the most well-known and well-attested reports concerning Russian interference in the 2016 presidential election. According to this report, which is highly confidential, Russian interference in the election has been directed at the current Russian president Vladimir Putin. It is also defined in the report that this interference was aimed to destabilize people to undermine trust in the democratic process in the United States and undermine Secretary Hillary Clinton's electability and presidential prospects. It should be noted that the Russian election interference operation had a number of components, the primary and most important part is the hacking and disclosing campaign, which was ran against by a Russian military intelligence firm. 32 This organization is known as the General Staff Main Intelligence Directorate DNC officials personal email accounts were hacked by the GRU, they did it by invading DNC servers and predominantly disclosed the data accumulated to multiple platforms, including the Guccifer 2.0 persona, WikiLeaks and DCLeaks.com. Aside from the servers that were hacked and released, none of the underlying computing devices were destroyed in the hacking-and-releasing campaign. In contrast, the Russian media outlets, RT and Sputnik, have begun broadcasting a dissemination campaign in English in support of presidential candidate Donald Trump. Furthermore, the Internet Research Agency, an NGO intimately associated with Russian intelligence, launched a social media campaign during the 2016 election. Up to two million dollars was invested in anti-Clinton and pro-Trump advertisements on major social media platforms such as Twitter, Facebook, and Instagram. The creation of a large number of fake accounts on social media outlets was used to connect with voters. Across outlets, more than 120 groups and trolls were initiated by the IRA while working their election interference agenda (Xiao, 2020). The challenges faced by social media companies remain but are insignificant in comparison to the capability of governments to weaponize social media both domestically and internationally. The manner in which social media companies categorize their users into community groups, for example, on Facebook through friends, or based on hashtags on Twitter provides an accessible avenue for manipulating these groups. Add to that the manner in which social media companies sell audience data to advertisers by identifying critical factors through the interactions of their users such as friends, posts, clicks, likes, shares, etc. Which have unprecedented power to manipulate domestic as well as foreign audiences. Even though the scandal surrounding Cambridge Analytica has caused outrage for its method. The social media business model is still largely based on the same ability of identifying and manipulating social media users (Oates, 2020). There appears to be little resentment towards this practice. It would appear that social media companies argue that if social media becomes the fifth dimension of warfare, then it is unfair to impose its consequences on the nature of social media itself. According to the author Vaidyanathan (2018), argues that social media has been designed as the perfect platform for dissemination, with social media companies taking minimal precautions in order to prevent misinformation's spread. The arguments presented by Zuckerberg and other social media executives are at the very least misinformed, and at the very worst, they are disingenuous. As 33 evidenced by the fact that social media platforms are being weaponized and the lack of rights of recourse for foreign nationals against U.S. companies, in spite of the fact that media platforms are left unregulated and largely unresponsive, their choice is not to significantly change their business models. There is no doubt that shareholders in companies such as Facebook, Twitter, and Google would oppose greater regulation of their platforms. It is necessary to return to the concept of the fifth dimension of war, that is information warfare, in order to completely comprehend the role of social media companies in warfare. The addition of it to the other dimensions of land, sea, air, and space makes five dimensions. There is no doubt that information warfare is not a new concept, but the digital realm has dramatically changed and augmented it. Taking advantage of the nature of social media, foreign intervention operations have the possibility of identifying key groups, infiltrating them, and manipulating them. It has become increasingly clear that Russians were involved in the use of wedge issues in 2016 as a means to polarize and manipulate U.S. citizens and were capable of manipulating Trump supporters social media was particularly useful in this regard (Jamieson,2018). This means that social media company design has no longer been viewed as a matter of pros and cons. As analyst Vaidhayanathan (2018), points out the design of Facebook makes it an ideal platform for information warfare. Due to the nature of social media as it is today, such activities cannot be detected or curbed as it is an inherent feature of the platform. Therefore, the ingenuity of American corporations combined with business logic created a weapon that is used against citizens of the United States. The information war conducted by Russia followed a two-fold strategy. First, a series of efforts were made to rally rightwing support for Trump by pretending to be U.S. citizens and sharing pro-Trump material on Facebook. Secondly, there was a high degree of demoralization of Clinton supporters and a reduction in support for the Democrat. It included a large social media campaign aimed at discouraging African American participation at the elections and encouraging leftist support for Third Party candidates. Additionally, hacked messages have also been made public following the hacking of the DNC and Clinton campaign emails. Trump's retweets were attributed to Russian trolls. This is an impressive level of success for a foreign propaganda campaign conducted on such a large scale as an American Presidential election. The overwhelming amount of fake news in the election 34 campaign is not primarily due to Russia. Russian sources have been attributed to a relatively small number of fake news stories. Also, domestic misinformation proliferated far more in the run-up to the 2016 presidential election than Russian misinformation. During his campaign, Trump himself circulated a lot of false news stories. Last but not least, news articles that become viral are likely to bring in a lot of advertising revenue, which contributes to the spread of fake news. As a matter of fact, most of Russia's propaganda mimicked messages that were already widely spread during the campaign. A wide array of right-wing media organizations such as Fox, Breitbart, talk radio has tremendous influence on US public affairs, including the Trump campaign. In a large variety of rightwing media outlets, provocations against the IRA had already become a comprehensive part of programming that aimed to provoke the rightwing. There is no doubt that such interventions of the Russian side have only added to the already cacophonous sounds of incendiary rhetoric and misinformation ( Way & Casey, 2019). The argument contends that Russian trolls' effectiveness was directly attributable to their redundant nature, a fact that re-enforced Donald Trump's campaign themes in an unequivocal way. It is not clear, however, that Trump needs Russia to make his message stronger in light of the billions of dollars he receives in free media (Jamieson, 2018). Chapter 5: Conclusion There are three main findings from this study that are of great importance. First, that the impact of fake news on the election results was minimal. There was far too little difference in the 2016 US election between the winning candidate and the losing candidate. This suggests that even a marginal effect can have a significant impact on a candidate's or party's election outcome. Second, candidates and politicians recognize the importance of social media. Resulting in a decrease in the focus of their campaigns on traditional campaign rallies, Which served as a platform for candidates to spread information and encourage the public to believe and support candidates through social media. 35 Third, the social media business model is widely employed, and the companies have never been questioned. In this regard, it is an additional advantage for information warfare which serves enemies to weaponize social media. Social media provided a platform for political leaders to individualize their campaigns and aim at specific or targeted communities of electors with a predefined reality. examine the impacts of such political micro-aiming, which destroyed day to day endorsement costs on Facebook during the 2016 US presidential campaign. We scale the power of social media campaigns with the help of disparity in endorsement costs dictated to approach desired audiences, described by political history, location, and demographic traits. There are two basic concerns addressed: how effectively did each candidate's social media campaigns pursue each community of followers? How huge was the impact on electors? we can conclude that micro-aimed political endorsements on social media outlets had serious and long-lasting impacts when conditioned on location, thought process, ethnicity, and sex. Subjection to these endorsements compelled voters to not change their predefined polling objectives, specifically among the people who exerted a determination to vote for Donald Trump. It can also be stated that micro-aimed endorsements decreased turnout in aimed liberals, contrastingly increased turnouts, and reliance for Trump in the moderates (Liberini et al., 2020). Internet functionalities, such as search engines and social media outlet workers, exert prominent regulatory functions in the social media universe. They dictate the utility, approachability and importance of context and thus convulse huge authority over the diffusion of fake news. This decodes the reason behind the excessive criticization of social media's role and the compulsion to suppress and intercept the stream of "fake news. It includes the reason behind the controversial German Act to enhance enforcement of the law in social networks places so much prominence on social media platforms' commitments to immediately work with and give an account of accusations about unlawful context. This law has been denigrated for its impact on the human's basic right of free speech (McGonagle, 2017). The circulation of data and the apparatus for democratic engagement have been predominantly altered since the introduction of digital media, specifically social media. Social media outlets such as Twitter have been largely complemented for its endowments to democratization of public discussion on civic and political concerns. Also, there are many studies and findings that exert with the conditions of abuse of these social media platforms. The 36 distribution of illusionary, fake, and specious data targeting to orchestrate public opinion stands as prominent features among risks. Theres one field where the ideological assaulters such as Russians and other nations personnel, were partly successful in influencing the public was in the 2016 Presidential US election through deceptive and false information campaigns. Technology personnel have been reluctant in recognizing network trolling and very less were aggressively taking part in spotting and knocking it out from the bottom (Badawy et al., 2018). I have disclosed the issues that deceptive and fallacious information causes when spread during or before elections but justifies mentioning it again here that without the co-operation of state-of-the-art computing tools, there wouldn't be much to combat against penetrating and single-minded misinformation campaigns run on social media outlets-foreign or domestic. The 2016 Presidential election in the United States was a largely controversial one, as both political leaders of Democratic and Republican party Hillary Clinton and Donald Trump respectively, experienced solid contrasting resort and resistance with controversial social media campaigns, personal attacks, and savagery at campaign rallies. This had led to an atmosphere where voters were reserved in exhibiting their resort for a leader or candidate (Kushin et al., 2019). The spiral of silence theory in public opinion, demonstrated by German scholar Elizabeth NoelleNeuman states that the public are less willing to openly endorse a political leader, if they tend to experience that their candidate is uncherished. This unlikely behavior of not exhibiting support to the unpopular leader, can lead to that candidate being less accepted - the spiral of silence. The tendency of Trump voters in not exhibiting their support openly on platforms and online, can lead to a scenario of less acceptance of Trump in public opinion polls (McKinley et al., 2020). After going through the thorough analysis regarding the influence of social media on public opinion and how this can be used to manipulate and orchestrate the view and perspective of electors. It can be stated indefinitely that democracy's future poses a big threat. Additionally shedding light on the enhancement of media in selective broadcasting and micro-aiming information at the most vulnerable and desired audience has helped them in steering the results of government orders, election polls in the desired manner. This also shows its extreme impact on younger generations, where they are sourcing their data from these social media channels and are in a confused state of what are the facts and what is fiction. 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... Mapping Gentrification In Garfield Park Mya Daelynn Thesis Submitted in partial fulfillment of the requirements for the degree Master of Arts in Applied Sociology in the Department of Sociology University of Indianapolis April 4, 2022 _________________________________________ Colleen Wynn, Ph.D. Assistant Professor of Sociology, Advisor _________________________________________ Amanda Miller, Ph.D. Professor of Sociology, Reader Reflexive Statement My interest in gentrification occurred after taking an Urban Sociology course at the University of Indianapolis, where I read the book, The Color of Law (Rothstein, 2018). After reading this book, I realized how greatly society is impacted by gentrification, including schools and communities present before gentrification. Since this class, I have spent most of my studies on understanding the depths of gentrification and joined a Housing Committee that aimed to support the homeless in Garfield Park. While listening to this committee, I realized how little support the artists, homeless, and communities had in terms of protecting them from the increased cost of housing and gentrification. This led me to want to study Garfield Park more in-depth in relation to gentrification to see if signs of disinvestment were as prevalent as I heard from a Garfield Park resident and active advocate for the community. For this study, I will be using Smiths (1998:198) definition of gentrification, which describes the process as starting as disinvesting into a community before experiencing a reversal reinvestment that causes in-migration of a relatively well-off or upper-middle-class population. In sum, gentrification is the forced economic displacement of groups already living in the areas pre-gentrification. A 2019 report from the National Low Income Housing Coalition (NLIHC) calls attention to disinvestment in gentrification in San Francisco, perpetually happening systematically, to keep power and class together. It summarizes that there is a correlation between class and power. Generally, in San Francisco, as in many American cities, there is a strong correlation between wealthy and white people. The latter correlation explains that those being disinvested or displaced are more likely people of color. Those in power or who obtain the wealth hold their claims on the city because they also have political power. This means that those on the disinvestment side have less income and are at a greater risk of eviction. Gentrification and disinvestment go hand in hand; though sometimes this process can take decades, the impact on communities is significant. Since we know that the process of gentrification can take decades, you often see neighborhoods experience many years of sustained disinvestment as a result (Richardson, Mitchell, and Edlebi 2021). During this time, those who can move elsewhere will likely do so. Perhaps years later, these once-forgotten communities, often located closer to downtown areas because of the historical development of cities, suburbs, and White flight, become attractive spaces for new development (Boston et al., 2021). Housing and land prices are often lower in these areas, so those who cannot afford to live in more expensive communities may move to these neighborhoods. However, it is essential to understand that gentrification does not occur because of individual decisions but rather of cities structural and systematic choices regarding where and how resources are allocated. This unequal distribution and consistent disinvestment creates conditions that allow neighborhoods to become ripe for gentrification and redevelopment. (Zuk et al. 2017) The act of redevelopment creates changes in the physical attributes of a neighborhood, explicitly showing whether or not disinvestment is occurring. These changes to a neighborhood are backed by developers and investors shifting their role from market regulator to market facilitator (Boston et al. 2021). This process leads these areas to be primed for gentrification. One form of redevelopment can come through transportation investments. In Indianapolis, there has been a focus on Transit Oriented Development (TOD) (Deadmond 2021). One neighborhood that has seen some of this development is Garfield Park. The focus of this study will be to explore whether or not Indianapolis Garfield Park neighborhood has been primed for gentrification through viewing whether or not physical signs of disinvestment are spotted. Literature Review Defining Gentrification For this study, I am using Smiths definition of Gentrification (1998:198), as referenced earlier. Along with this definition, I am highlighting aspects of Andrew Lees process of gentrification definition that states, gentrification happens when wealthier newcomers move into working-class neighborhoods. New businesses and amenities often pop up to cater to these new residents. Potholes might get filled; a new bus line might appear. These changes attract even more affluent people, and property values go up. Landlords raise rents to what these new arrivals can afford to pay, so the original tenants get forced out. Lees definition of the process of gentrification highlights the gentrification cycle that starts with disinvesting in an existing community which then turns into one that is revitalizing the said community, priming the area for in-migration. In addition to different ways to define gentrification, there are also different signs to look for when trying to understand if gentrification is occurring; some researchers have defined gentrification through physical manifestations (Sims 2018). These physical signs of gentrification can be the removal of small, independent stores replaced with chain stores or homes renovated into loft-style homes (Barton 2014). Loft-style homes are different from an average home; these normally stand out due to their large open floor plan, high ceilings, and large windows. Boston and colleagues (2021) reiterate this by explaining that gentrifications physical signs can be the sight of heavy construction, luxury homes, chain stores, etc. The reiteration helps emphasize that these changes to a neighborhood are backed by developers and investors that shift their role from the market regulator to market facilitator (Boston et al. 2021). Market regulators, referring to housing, are helpful when protecting consumers where there is a competitive force. A market facilitator in housing would be owning or controlling the marketplace, usually facilitating the transactions or sales (Schill, 2005). Hwang and Sampson (2014) analyzed physical signs of disorder to categorize what disinvestment looks like in a neighborhood; according to them, this can be trash, unkempt vacant lots, or housing decay. Similarly, Tanya Golash-Bozas current study in DC (2021) used these signs to justify whether disinvestment in a community had occurred, even going so far as to include the condition of sidewalks when looking for the physical disorder (Delgado and Swanson 2019). These themes explain that the physical assets of homes can disrupt the landscape and history of an existing neighborhood with the changes in colors of houses, more oversized windows, or newness of aesthetic choices (Delgado 2021). If these physical changes are present, gentrification is more likely to occur. You can tell this as the surrounding infrastructures look outdated or inadequate, signaling disinvestment or neglect in a neighborhood. These changes bring fear to homeowners as Delgado (2021) claims, We know how it goes; wealthy folks move in, and those who cannot afford or simply do not desire to make the necessary changes to their homes are priced out of the area When Delgado states that these residents are priced out of the area, it is another way to describe Smiths (1998) definitionreferring to the process of gentrification itself, one that starts as disinvesting into a community before experiencing a reversal reinvestment that causes in-migration of a relatively well-off or upper-middle-class population. The reversal reinvestment piece causes residents to get priced out of the area. When loft-style homes are present, and investments are made in the community, property taxes arise, which not all can afford. Although we do not have to disinvest in our communities to revitalize an area, we see a continuum of this disinvestment cycle breaking apart existing communities. By using physical manifestations and Smith's definition, this study will look at signs of disinvestment or investment occurring in Garfield Park. Measuring Gentrification | Mirrored Studies Explained What was measured How Gentrification was measured Who measured Gentrification Physical Signs of Gentrification By coding residential and commercial neighborhoods to detect visible cues of neighborhood change and looking at the symptoms of physical disorder. Hwang and Sampson (2014) Physical Signs of Gentrification By coding residential and commercial neighborhoods to assess public and private investments in Washington Golash-Boza (2021) DC. Measuring gentrification can be done through different approaches. Here, I focus on ways researchers have coded for the presence of gentrification. The coding process is critical to help investigate signs of gentrification and the disinvestment that comes with it. I reviewed what Hwang and Sampson (2014) did in their study for my codes. They measured gentrification by observing physical signs of gentrification that represent both the residential and commercial sides of the neighborhood and coding them to reflect and showcase the ways gentrification shows up in a neighborhood. The codes then helped tell the story of gentrification in Chicago neighborhoods. This is similar to the process in the defining gentrification section, as these physical manifestations can be used to define and measure gentrification. In addition to mirroring Hwang and Sampsons study, I similarly mirrored Golash-Boza's (2021) ongoing work on gentrification in Washington DC to help me set the foundation for looking at Garfield Park as a whole. Golash- Boza analyzed Washington DC by randomly selecting block faces from each census tract in Washington DC to observe physical disorder through Google Street View. To clarify how Hwang and Sampsons, and Golash- Bozas studies were used and measured for this study, refer to the table above labeled Measuring Gentrification | Mirrored Studies Explained. One approach to measuring gentrification would be looking at the physical aspects of gentrification. Some physical signs of gentrification noted in these works when looking for public disinvestment are features like litter and unkempt streetshighlighting that disinvestment can look like abandoned structures or metal fences. The investment side of gentrification, ranging from public to private investments, can have physical features like new public courtesy signs, patio furniture, and the signs of commercial assets (Hwang and Sampson 2014). The symptoms of physical disorder Hwang and Sampson (2014) use are often indicators of disinvestment in the community. Both Golash Bozas study and Hwang and Sampsons look at physical cues to show the impact of a neighborhood over time, viewing symptoms of the physical disorder and assessing investments made in that community. Regardless of the approach, measurement, or signs, we can protect the people in our community from disinvestment. Social Disorganization Theory Social disorganization theory has primarily been used to study crime and its impact on social stability (Wickes 2017). This theory explains how neighborhood characteristics correlate with crime rates (Cantillon, Davidson, and Schweitzer 2003). Social disorganization theory states that location matters when predicting illegal activity (Bond 2015). This traditional lens looks at drunk people, the volume of police presence, or litter. However, I will use social disorganization theory to investigate physical signs of gentrification and disinvestment in Garfield Park. These physical signs of disinvestment and gentrification can provide evidence that the neighborhood is primed for or currently undergoing gentrification. These signs do cross over slightly to the traditional lens because disinvestment will show up as illegal activity present or criminal behavior present such as litter or police cars. On the other hand, investment can show upgrades in a community or signs promoting kindness. These investments that you see directly relate to social disorganization theory in that location matters when seeking social stability, meaning an improved community or one with upgrades. Seeing these improvements allowed me to evaluate social disorganization as it relates to gentrification and will enable me to view gentrification as it relates to the community and those affected by gentrification signs. Methods Garfield Park Neighborhood The Garfield Park neighborhood is on the Southside of Indianapolis with the boundaries of Beecher St. to North I-65 to East, Troy Ave. to the South and East St./Madison Ave, Garfield Park (the neighborhoods namesake and anchor) sits right in the middle of this boundary. For a neighborhood view, refer to the image above. Garfield Park is the oldest park and was once the biggest in Indianapolis. With this historical neighborhood being in a prime location in Indianapolis, there has been much activity throughout the years, bringing in new businesses and diversity. A recent IndyStar Indianapolis Star (Indianapolis daily newspaper) article (Bongiovanni 2021) emphasized that gentrification is actively happening in Garfield Park and shares the fears of what could happen to the current artist residents. Assessed values for properties are increasing as redevelopment rises in Indianapolis. This increase in value can lead to the displacement of existing residents and artists who helped build an area through the act of pricing them out of their homes (Bongiovanni 2021). The start of a new bus rapid transit (BRT) system, the first line of which (the Red Line) opened in 2019, adds additional challenges to Garfield Park and the boom in gentrification. It is now more accessible for people to be brought into Garfield Park or downtown, creating more business. This transit investment has led to Transit-Oriented Development (TOD) along these bus routes (IndyConnect 2015). The South Indianapolis Quality of Life Plan (SoIndy), Garfield Park, has been very focused on this TOD, even dedicating their winter 2020 summit meeting to the topic (SoIndy 2021). Anecdotally, there has been much discussion of TOD, the Red Line, and the potential impacts on the community (including gentrification) in Garfield Park and surrounding communities. Further anecdotal evidence from those in the neighborhood indicates that many developers and those hoping to capitalize on the Red Line have been buying up properties along Shelby Street with the hope of flipping them or renting them out. The attraction of improved public transportation brought in more people, as highlighted by Hwang (2019) in the IndyStar, Lackner said the bus rapid transit system, which will run down Shelby Street from Fountain Square, cutting through Garfield Park and Bean Creek, has added to the frenzy of the developing Fountain Square, and now Bates-Hendricks are driving first-time buyers our way. The gentrification of Fountain Square is well known in the city and has pushed out long-term working-class residents and artists, with some moving into Garfield Park (Calvert 2019). Fountain Square is often discussed as a cautionary tale for residents in nearby neighborhoods. Anecdotally, residents and community organizations can often be heard saying they do not want to become the next Fountain Square. To give background to the people present in Garfield Park right now, in 2004, an organization called Big Car Collaborative (Big Car) was founded in Indianapolis, in the heart of Garfield Park. As found on the Big Car history page, their mission is to bring art to the people, people to the art, and emphasize the importance of creativity. Thus, in addition to keeping the skills alive as they have been in the past, Big Cars efforts are now towards keeping artists in Garfield Park. Additionally, the neighborhood association in Garfield Park has developed many committees, such as their Walkability and Beautification Committee, which is working to sustain the charm, prevent gentrification, and improve the area's current state for the existing community. As is evident, gentrification is a prime topic in Garfield Park; it is critical to observe and document ongoing changes and signs of disinvestment and gentrification. Therefore, my research broadly explores the question of whether there is evidence of physical gentrification and disinvestment in Garfield Park. I use Google Street View images from 2019 to look for visual signs of gentrification and disinvestment in the Garfield Park neighborhood to explore this question. I supplement these analyses with decennial census data from 2000, 2010, and 2020 Censuses and the 2015-2019 American Community Survey (ACS) to explore how the neighborhood has changed demographically. Neighborhood Demographics The Garfield Park neighborhood contains two census tracts, tracts 3578 and 3579 (Marion County, IN). Tract 3578 is the northern part of the neighborhood, and tract 3579 is the southern part. See the map in Appendix B for more information. I use these census tracts to describe Garfield Park demographically over time. These results can also be seen in Table 1 below. I draw data from the U.S. Census Bureau's 2015-2019 American Community Survey (ACS) and the 2000 and 2010 decennial censuses. Both tracts are majority White at both time points. In 2010 both tracts were between 8.2 -8.7% Black and 84.8-86.8% White. In 2019, tract 3578 was only 5% Black and 91.2% White, while tract 3579 was 12% Black and 84.8% White. As of 2019, Garfield Park in tract 3578 and 3579 is primarily White race dominated. The most noticeable change in race/ethnicity is that up until 2019 in both tracts, the second most present race/ethnicity in Garfield Park was Black; now, there is an increase of Hispanic race/ethnicity in both Tracts. However, it is essential to note that these tracts contain areas not included in the Garfield Park neighborhood. So, while these data are informative, we cannot determine which families live in what part of the tracts and who is included in the Garfield Park neighborhood boundaries. To describe the median home prices in Garfield Park overtime, I pulled information from both of the two census tracts used in the map and demographic data from the U.S. Census Bureau's 2015-2019 American Community Survey and 2000 and 2010 decennial censuses to describe what has happened to median home prices. The most significant jump is in tract 3578, with a 16,100 dollar increase from 2015 to 2019. The critical piece to note is the jump in housing vacancy in both tracts from 2000 to 2019. In tract 3578, there is an 11.1% increase in vacancy from 2000 to 2019, and in tract 3579, a 21.3% increase, a significant increase that indicates a lack of affordable housing. Both ownership and length of ownership in homes in Garfield Park show a positive growth over time, depicting that those who are owning are likely to stay or have been living in this neighborhood for a significant time. For at least ten years, ownership of a home has steadily increased from 2000, 2010 to 2019. Based on the average inflation rate of 2.11% from 2000 to 2019 and a cumulative inflation rate of 48.47%, tract 3578 saw a decrease of median housing value by 3.4%, and median income levels decreased by 22.4%. This means that the residents occupying their homes at this time could no longer afford the homes that they are living in. Using the same average inflation rate and cumulative inflation rate tract 3579 saw a decrease of median housing value by 14.1%, and median income levels decreased by 7.4%. With that being said, those occupying their homes are not as affected as they would be if they were in tract 3578. The difference is, in tract 3579, you can see that the median income went down in 2010; this can likely be explained by the recession or the chance of a few people moving. There is an increase of median income by 12,621 dollars from 2000 to 2019 in tract 3579, based on the 2.11% inflation rate. In tract 3578, starting in 2000 moving to 2010, using the 2.11% inflation rate, the median income should be $30,867.85. Yet, in 2010 the median income was $34,444, a 3,576.15 dollar increase. An increase above the inflation rate occurred again, moving from 2010 to 2019 at a rate of 323.76 dollars. Looking at the same rate of inflation in tract 3579 starting from 2000 to 2010, the median income at the inflation rate should be $32,150, yet we saw an increase to $34,361.03. In 2019 the median income was listed at $46,272. Yet, if the median income were to be changing at the inflation rate, it would be only $32.828.36. There is a significant increase of $13.443.64 above the value expected from the inflation rate. This jump could signify that gentrification is starting to move into this part of the neighborhood. You can see the transition seeping in from tract 3579 and likely moving into 3578, and this is justified through observational signals discussed more below and census information. Gentrification is a part of the class displacement, and median income can start the displacement of families in Garfield Park. While looking at these tracts, it is well-established that Census tracts and resident-defined neighborhood boundaries do not always align (Coulton, Korbin, Chan, and Su 2001). I use these neighborhood boundaries as defined by the neighborhood association on their website to set the boundaries for this study. Table 1: Neighborhood Characteristics using 2000, 2010, 2019 Census and ACS data Tract 3578 Tract 3579 % Race/ Ethnicity 2000 2010 2019 2000 2010 2019 Black 0.66% 8.7% 5.0% 2.1% 8.2% 12% Hispanic 4.7% 5.7% 4.4% 8.3% 9.1% 14.4% White 92.8% 86.8% 91.2% 87.2% 84.8% 84.8% % housing vacancy 13.3% 10.6% 24.4% 8.1% 11.8% 29.4% % owners 63.4% 63.4% 50.4% 59.8% 50.3% 61.3% % living in unit at least 10 years 69.3% 58% 82.9% 64.7% 72.3% 74.3% Median housing value for owner occupied units $64,800 $76,800 $92,900 $69,600 $86,700 $88,800 Median Income $30,230 $34,444 $34,847 $33,651 $32,150 $46,272 Data is drawn from the 2000 (tables DP03, P007, H004, H007, H038 and H076 ) and 2010 decennial censuses and 2015-2019 ACS data (tables DP03, DP04, and DP05). Methodology Following Golash-Bozas (2021) methods, I used the stratified random sampling method to randomly select ten-block faces from each census tract in the Garfield Park neighborhood to observe physical disorder. Following Golash-Boza (2021), I ensured that residential and commercial representation from each tract was represented in the blocks selected sample. Once the ten blocks were chosen, I developed and applied a series of codes for signs of gentrification and disinvestment. The physical disorder will vary; what will help me see the disorder is signs like whether houses range from revitalized to abandoned. I detail these codes below. Additionally, in Appendix B, there is a link for more detail on the codes and a description of what each code entails. These codes were based on codes developed and used by Golash-Boza (2021), Hwang and Sampson (2014), and Hwang (2015). I created a spreadsheet in Excel for each block to track and apply codes. I used data from 2000, 2010, and 2020 Decennial Censuses to observe demographic changes that may have taken place in the Garfield Park neighborhood to provide additional context for my Google Street View analysis. This coding process helps share the gentrification status of Garfield Park and show signs of physical disorder if any. A physical disorder in this context is synonymous with signs of disinvestment, such as looking for signs of littering. This definition of physical disorder varies from the traditional forms of physical disorder described above. My observations through Garfield Park do not allow me to see if people are drunk or arguing. Instead, my observation focuses on the physical disorder of the homes on each block. Codes Following Golash-Boza (2021) and Hwang and Sampson (2014), I code for the number of structures, number of apartment buildings, number of residential structures including apartments, old structures, minor upgrades (new shutters, new doors), major upgrades (new paint, new roof), new address numbers (identified by updated font or appearance), new patio or landscaping (identified by appearance), decay (paint chipping, roof cracks, missing siding), number of abandoned homes (identified by homes being boarded up or abandoned), new signs controlling traffic, condition of sidewalks, presence of large-scale development, signs discouraging disorder, vacant areas such as lots, street beautification (e.g., planted trees, park benches, upkept flowers), amount of litter, unkempt vacant area, spaces for commercial uses, art galleries, if people are present and if so what characteristics they had. Detailed examples for each code can be found in Appendix B. Detailed information for each block is provided in Appendix A. There are several differences among blocks, with the most current Google Street View date available in 2019. I am using most of the codes that the previous authors used in their study except for the following: new public courtesies, an indicator of foreign presence, describing indicators of foreign presence, and I did not compare the tracts from year to year as I focused on the most updated year available. I left these out as these details were not as pertinent to look for when examining Garfield Park. However, what was vital for me to look at was the addresses on the homes. Since I am viewing the physical signs of Gentrification, I wanted to see if the new trends of modern font addresses would be indicators of gentrification. A local nonprofit in Indianapolis, ArtMix, has their students creating these house numbers in multi-colored and modern fonts. You can also find house numbers at Lowes Home Depot and can order them online. With an increase in interest in these numbers, I was interested in seeing if the interest would tie in with signs of disinvestment. I did ensure to code for disinvestment signs such as sidewalk conditions, whether abandoned homes were present, and litter. It was essential to keep these codes in this study as it would aid in understanding the social strength of the neighborhood. Findings In total, disinvestment signs in Garfield Park were similar from block to block in their respective tracts. In tract 3578, you would consistently see similar signs of disinvestment regardless of where the home was in that respective tract. After applying and analyzing the codes, I can conclude that each block in Garfield Park had a style, and it was rare for one house to stick out completely. The one time this rule was broken was with the photo referenced in Appendix B section C. This was a case of a significant revitalization that occurred and changed the way the neighborhood was originally styled. The disinvestment signs that I coded for were generally consistent across Garfield Park. This consensus helps me identify what phase in the gentrification process Garfield Park is at in relation to Smith's definition of gentrification. The phase Garfield Park was in upon looking at my codes explains that Garfield Park is showing beginning signs of gentrification. Table 2: List of codes color-coded into sections that are similar in nature for finding discussion purposes. *In Appendix B is a more detailed look into the codes including definitions of each code* Number of structures Number of residential structures # apartments # of Structures considered old # old residences w minor upgrades # residences w major upgrades New signs/ structures controlling traffic New address numbers present # residences w new patio furniture or landscaping. Condition of Sidewalks: # of Structures w metal gates/fences Signs discouraging disorder Vacant area and public street beautification Litter Unkempt vacant area or public st. frontage: New large-scale development Commercial uses aligned w cultural aspects of gentrification Art Galleries Describe commercial uses: Visible people? Describe visible people: *Each tract used the same set of codes to analyze disinvestment signs in Garfield Park* Tract 3578 Code Findings Looking at the pink block first with the codes number of structures, the number of residential structures, and the number of apartments, it was found that tract 3578 as a whole is primarily a residential neighborhood. In this given tract, out of 302 structures, there are five apartment buildings, indicating that this tract is predominantly one that consists of individual homes. The individuality allowed me to analyze more in-depth the phase of gentrification that this neighborhood is experiencing as I could look more closely at the unique style of each home. Since this neighborhood comprises individual residential structures, the following coding process was vitally important in dictating Garfield Parks phase. These codes were looking at the number of structures that are considered old, the number of old residences with minor upgrades, the number of residences with major upgrades, and looking to see if any signs control traffic. One hundred sixty-five residential structures are coded as old out of the 302 structures in tract 3578; therefore, more than half of these homes were older. Since Garfield Park is the oldest park in Indianapolis, most of these homes were built when growing and have not been significantly updated since. Golash-Bozas (2021) study indicated that an old house would have a historical landmark. For my research, since these homes are in the oldest park in Indianapolis, I looked to see if they had been refreshed in the past few years by switching the year in Google Street View or if they had a historical landmark. While coding if a home was old or not, I coincidentally would look at the upgrade status of a house; minor upgrades signally a door change or new shutters, and major upgrades being fresh paint, roof, or fences. In tract 3578, it was more common to see minor upgrades being present than significant upgrades. While viewing upgrade statuses, it was a natural step to look at the next codes; new address numbers present, number of residences with new patio furniture or landscaping, condition of sidewalks, number of structures with metal fences, signs discouraging disorder, litter, number of unkempt vacant area or public street foliage and looking at the number of vacant areas and public street beautifications present. As mentioned earlier, there is a new trend of updating your home address to a different font, usually more modern or colorful. In this individual tract, not many addresses were updated to follow this trend; however, the homes that did upgrade their font status had also upgraded other parts of their home, such as their landscaping or fences. Each block in tract 3578 had at least one house upgrade to their landscaping or had new patio furniture present, although fences were uncommon in this tract as a whole. Out of the ten blocks that were looked at in this block, only one had poor sidewalk conditions, which meant they werent present or had significant damage. The rest ranged from mild to good, meaning there is the presence of a sidewalk, but it may have some cracks or weeds poking out of the cement. Sidewalk status is important to view as when an area is going through significant redevelopment, sidewalks and potholes are one of the first things to improve. Along with sidewalk conditions, it is normal to see signs discouraging disorder in redeveloping neighborhoods like signs that discourage littering, neighborhood watch signs are shown, police surveillance signs present, or the police themselves. In this tract, there were no signs of that discouraged disorder in this tract and no vacant areas present. If there were any spaces, there were newly planted trees. However, this only happened on one block out of the ten in this tract. Unkempt vacant areas were also lower in this neighborhood, with only two signs of this: weeded yards or faded traffic signs. Moving away from the residential side of the neighborhood, I coded for the following: number of new large-scale developments, commercial uses that aligned with cultural aspects of gentrification, and art galleries. New large-scale developments means newly renovated homes, new commercial spaces, or significant remodeling projects. In this tract, only one street had a significant number of new developments occurring on block-face number eight. In relation to commercial uses, there was none present, there was a closed down restaurant on block-face number nine, and no art galleries present either. As stated at the beginning of the findings for this tract, it is densely more residential than commercial; therefore, the lack of commercial existence was to be expected. Out of the ten blocks viewed, there were fourteen people captured in the Google Street View photographs in terms of people shown. Out of the fourteen, six were white women, three were black males, and five were white men. With Google Street View, people are not captured very clearly, and it is hard to give descriptive details other than race and assumed sex. Tract 3579 Code Findings Starting at the pink block first with the codes number of structures, the number of residential structures, and the number of apartments, it was found to be similar to tract 3578, which was mostly residential. However, there were more structures present in tract 3579, with only two out of the 320 structures being apartment buildings. Therefore, more individual residential structures were present in tract 3579. The next codes to look at were the number of structures that are considered old, the number of old residences with minor upgrades, the number of residences with major upgrades, and looking to see if there are any signs that control traffic. Using the parameters described in tract 3578 in 3579 to dictate what it is that makes a house old, again, you see the trend that the homes are predominantly older, with the number of old being 235. Similar to 3578, minor upgrades were more prevalent in this neighborhood; however, it was more likely for this tract to have major upgrades than 3578. Zero signs were present for controlling traffic. For the next block of codes, I looked at; new address numbers present, number of residences with new patio furniture or landscaping, condition of sidewalks, number of structures with metal fences, signs discouraging disorder, litter, number of unkempt vacant areas, or public street foliage and looking at the number of vacant areas and public street beautifications present. First looking at new addresses present, there again were not many homes that had upgraded their addresses yet; if they did take this step, they had new patio furniture or landscaping. Which, in this tract, was a huge trend of having at least landscape or new patio furniture. Fences were less common than having landscaping or patio furniture in this tract. However, sidewalk conditions were overall good to mild except for block face number nine. Interestingly in block-face number ten, it is noted that as you went down the street, you could see a change in sidewalk conditions going from good to mild as you moved closer to Southern Avenue. There were no signs discouraging disorderly behavior, no vacant area was unkempt, and no vacant areas and public street beautification presence. Only two blocks had signs of some litter out of ten blocks. Moving to the next set of codes that focus more on the commercial aspect of this tract, I coded for the following: number of new large-scale developments, commercial uses that aligned with cultural aspects of gentrification, and art galleries. For new large-scale developments, there were only three houses that were renovated or were being renovated. For commercial uses that aligned with cultural aspects of gentrification, the building types present were; restaurant chains, neighborhood health centers, two art galleries, one independent shop, and gas stations present. Only four people are shown for the codes of people present in tract 3579. Out of the four people, all were white, two females and two males. Both females were seen walking with a stroller, one man was walking alongside one of the women, and the last man was seen mowing the lawn. Golash-Bozas (2021) study looked to see if families were present when viewing the people and looked for basic demographic information, in this tract, there are indications of families present. Tract 3578 and 3579 Findings Overall both tracts were predominantly residential, with most signs of redevelopment showing up as smaller upgrades. In total the area is mainly cared for; however, when you hear gentrification in Indianapolis, one of the places you name is Garfield Park. However, I found that there were not plenty of wholly renovated homes. Major Findings One major finding is that new addresses are consistent with redevelopment indications. In Appendix B, you can see an example of a unique address that indicates gentrification versus one that has the original style of the existing neighborhood. The address fonts are normally changed to a more modern font. When the font looked more modern, you could see that the address change came with more modern trends, such as door colors that were more unique or bright. The patio or landscaping reflected this address change, too, as the patio either had updated furniture or the landscaping appeared to be fresher. These are indicators that redevelopment or revitalization was happening, which in most cases if I noticed there was a new address most times there was patio revitalization occurring too. This indicator means there is a positive relationship between new addresses and redevelopment indications, strengthening the argument that gentrification is underway in Garfield Park. The coding for these new addresses was unique in my study of Garfield Park, as it was not a part of the original coding set that mirrored Golash-Bozas (2021) study. For a neighborhood known for its artistry, a surprising finding was that there were only two art galleries in total in Garfield Park captured by Google Street View. In relation to the lack of art galleries, there was a lack of artists in the neighborhood, too, with only two significant indicators of artists being present in a neighborhood. This was shown via artwork on homes like fences or garages (see Appendix B for examples). Generally speaking, there is a greater presence of artists here than in other parts of neighborhoods in Indianapolis, especially due to its smaller size. However, the whole Garfield Park neighborhood does not have as much presence as it does in the area represented in Appendix B. Looking past the physical observations of Garfield Park, the other piece of information that I found to be interesting was the jump in housing vacancy in both tracts from 2000 to 2019. In tract 3578, there was an 11.1% increase in vacancy from 2000 to 2019, and in tract 3579, a 21.3% increase, a significant increase that indicates a lack of affordable housing. I found that there were not many vacant homes in relation to both tracts 3578 and 3579. However, I have only selected ten blocks randomly from each census tract, yet in these tracts, it appears that there are people living in the homes. Therefore after analyzing the codes, I have found that Garfield Park has not seen major redevelopment or the physical effects of gentrification yet. Discussion According to a 2020 report from the National Community Reinvestment Coalition (NCRC), 17% of tracts in Indianapolis are gentrifying. In Indianapolis, one neighborhood that is often discussed when people talk about gentrification is Garfield Park. Therefore, using codes for physical signs of gentrification and disinvestment, I use Google Street View Gentrification Observation (Hwang and Sampson 2014; Hwang 2015) to explore if there are physical indicators of gentrification in Garfield Park. My analyses find that each block has its own individual housing style. I did find one exception to this where redevelopment was undertaken for that specific home. The particular home indicates that a sign of gentrification is occurring (Boston et al. 2021) as a more extensive revitalization was taken upon in one location rather than any or all of the other homes. However, the overall lack of evidence of redevelopment likely means that gentrification is either not in full swing yet, or that it will occur in Garfield Park without massive redevelopment of homes. There were more elements of disinvestment than gentrification in Garfield Park. Since I used social disorganization theory to investigate physical signs of gentrification and disinvestment in Garfield Park, when there is not much representation of people or activity it is hard to relate it with signs of police presence or presence of misbehaving people. This limits how I can show the disinvestment side in my study through the traditional lens of Social Disorganization theory. Using the theory in a modern gentrification lens, there are disinvestment signs present such as littering and unkempt vacant areas that would follow suit with the Social Disorganization Theory, as it shows disinvestment in the community and how location matters for social stability. However, we have seen minor and major upgrades to the community promoting the redevelopment process and signs of investment that are linked to Social Disorganization theory increasing social stability, thus priming it for gentrification. One difference between Golash-Bozas (2021) study and mine is that I chose to add the physical presence of new address numbers as an indicator of gentrification. In my observations, I did notice a relationship between an updated home address and signs of renovation; therefore, for this study, I used this relationship as an indicator of gentrification or signs of renovation. This additional code helped support the power of relationship indicators in gentrification. Smith (1998) speaks about the process or phases that a community goes through as it is being redeveloped in Smiths definition of gentrification, these indicators helped identify the stage that Garfield Park is currently in, the stage of disinvestment. Golash Bozas (2021) study covered more grounds than mine and I think using this code could enhance the argument for the stages of gentrification that each block was in. Yet, I do not believe it would change her study's results past the additional evidence to support the occurrence of gentrification. Referring back to the images on Google Street View and looking at the codes that are based on pictures from 2019, Garfield Park is not gentrified all the way. However, there were enough indications of gentrification to conclude that the beginnings of redevelopment are in the early stages, with gentrification looming in the background. This was concluded because there is not enough consistent physical evidence of gentrification, particularly when looking at significant disinvestment signs. All that can be concluded is that disinvestment signs were in cahoots with home styles, meaning that if there were many cracks in the sidewalk, it was safe for you to see more outdated homes around it. As stated earlier, though, these signs were not consistent enough to dismiss gentrification or say it has wholly occurred either. Circling back to the finding where there is an 11.1% increase in vacancy from 2000 to 2019, and in tract 3579, a 21.3% increase, which is a significant increase. This increased vacancy rate could indicate a lack of affordable housing for long-term residents, or that housing is not well-maintained and people are moving, or that developers are buying up homes and not renting them, perhaps waiting to renovate or sell them until the housing values increase. Additionally, the Census data provides some evidence for class displacement (a key aspect of gentrification). As stated earlier, the median income for the state of Indiana in 2019 was 47,873 dollars, largely above the median income of both tract 3578 (34,847 dollars) and 3579 (46,272 dollars). With the significant increase of median income by 12,621 dollars from 2010 to 2019 in tract 3579 and the median income being close to the Indiana median income average, the argument for class displacement beginning in Garfield Park is strong and with the start of gentrification to blame. One limitation to this study is that I was analyzing blocks through Google Street View which was updated last in 2019, for the most part. However, on two occasions my block faces were not up to date. Both of these occurrences were in tract 3578 with block face six last updated in 2011 and block face four last updated in 2018. In these two instances, I could not get accurate information as to what these blocks looked like as of 2019. Another limitation was that with using Google Street View, sometimes it was hard to see homes behind trees or see addresses which were important for my coding structure. Within this limitation it was hard to get the representation of people in my study, if community members were not outside at the time the images were being captured, I have no analysis in terms of the people I saw. When this limitation occurred, I had to pull demographic data solely from the Census. Conclusion As gentrification moves into Garfield Park, the potential threat to those issues increases significantly, with the median income leaning towards a risk of further displacement. Now is the time for community resources like the neighborhood association, SoIndy, Big Car, and other nonprofits and neighborhood groups to be pulling together for the community to stay together and invest in that relationship. When an investment does occur, rather than using it to push out existing residents directly or indirectly, we can instead choose to help those already in the neighborhood by establishing community benefits agreements with investors in large projects to ensure that residents benefit from the investment, expanding public housing and so much more (Van Tol 2019). Appendix A Section A Home price reference Bradbury Ave. in Garfield Park, July 201 Bradbury Ave. in Garfield Park, June 2021 Section B Artistry Presence Section C Stages of Gentrification Section D New addresses versus Original Addresses Appendix B Map of Block Faces and Tracts in Garfield Park This map can also be explored online using Google My Maps. Codes can be explored using Google SpreadSheets. References Anon. n.d. Best Inflation Calculator (2022) - Historical & Future Value. SmartAsset. Retrieved January 6, 2022 (https://smartasset.com/investing/inflation-calculator#xnwtECp3rJ). Bond, M., 2015. Criminology: Social Disorganization Theory Explained. [online] e-Roll Call Magazine. Available at: [Accessed 7 December 2021]. Bongiovanni, 2021. Indianapolis artists might qualify to buy a rehabbed home for only $49,000. Here's how.. [online] IndyStar. Available at: [Accessed 7 September 2021]. Boston, A., Boston, A., Taboada, M., Hill, S., Zohar, R., Pugley, D. and Salazar, D., 2021. Gentrifying the City: From Racialized Neglect to Racialized Reinvestment. [online] Items. Available at: [Accessed 7 September 2021]. Calvert, Angela. 2019. GENTRIFICATION OF AN INDIANAPOLIS COMMUNITY: THE CITY PLANNING PROCESS AND RESIDENT NARRATIVES ON CHANGE. Cantillon, D., Davidson, W. and Schweitzer, J., 2003. Measuring community social organization: Sense of community as a mediator in social disorganization theory. Journal of Criminal Justice, 31(4), pp.321-339. Coulton, Claudia J., Jill Korbin, Tsui Chan, and Marilyn Su. 2001. Mapping Residents' Perceptions of Neighborhood Boundaries: A Methodological Note. American Journal of Community Psychology 29(2):37183. Deadmond, K., 2021. Getting There: A Resource Guide to Understanding Rapid Transit in Indianapolis, IN. Delgado, Emanuel and Kate Swanson. 2019. Gentefication in the Barrio: Displacement and Urban Change in Southern California. Journal of Urban Affairs 43(7):92540. Garfield Park Neighbors Association. 2021. Committees Garfield Park Neighbors Association. [online] Available at: [Accessed 7 September 2021]. Golash-Boza, T., 2021. Mapping Gentrification in Washington D.C.. [online] ArcGIS StoryMaps. Available at: [Accessed 7 September 2021]. Hwang, J. and Sampson, R., 2014. Divergent Pathways of Gentrification. American Sociological Review, 79(4), pp.726-751. Hwang, K., 2021. [online] Indystar.com. Available at: [Accessed 7 September 2021]. Indianapolis Metropolitan Planning Organization. 2021. Central Indiana Transit Plan | Indianapolis Metropolitan Planning Organization. [online] Available at: [Accessed 7 September 2021]. Lee, A., 2021. How Gentrification Happens and What to Do About It. [online] Teen Vogue. Available at: [Accessed 7 September 2021]. National Low Income Housing Coalition. 2021. National Low Income Housing Coalition. [online] Available at: [Accessed 7 September 2021]. Richardson, J., Mitchell, B., and Edlebi, J., 2021. Gentrification and Disinvestment 2020 NCRC. [online] NCRC. Available at: [Accessed 7 September 2021]. Schill, Michael H. 2005. Regulations and Housing Development: What We Know . Regulations and Housing Development: What We Know. Sims, S., 2018. What Appropriation and Gentrification Have in Common. [online] UMKC Roo News. Available at: [Accessed 7 December 2021]. Van Tol, J., 2021. [online] Available at: [Accessed 7 September 2021]. Wickes, Rebecca. (2017). Social Disorganization Theory: Its History and Relevance to Crime Prevention. 10.1007/978-3-319-44124-5_6. Zuk, M., Bierbaum, A., Chapple, K., Gorska, K. and Loukaitou-Sideris, A., 2017. Gentrification, Displacement, and the Role of Public Investment. Journal of Planning Literature, 33(1), pp.31-44.  ...

... 1 RACE, POVERTY AND UNINTENDED PREGNANCY: EXPLORING RESIDENTIAL CONTEXT Alexis J. Williams Thesis Submitted in partial fulfillment of the requirements for the degree Master of Arts in Applied Sociology in the Department of Sociology University of Indianapolis December 7, 2021 _________________________________________ Colleen E. Wynn, Ph.D. Assistant Professor of Sociology, Advisor _________________________________________ Elizabeth Ziff, Ph.D. Assistant Professor of Sociology, Reader 2 INTRODUCTION Unintended pregnancy continues to be a pressing problem in the United States, which has a relatively high incidence of unintended pregnancy compared to comparable regions. In 2011, the U.S. rate was estimated as 54 unintended pregnancies (per 1,000 pregnancies) compared to a rate of 27 in Western Europe (Sedgh, Singh and Hussain 2014; Finer and Zolna 2016). Rates of unintended pregnancy are highest for women who fall below the federal poverty line, and rates decrease as income level increases (Finer and Zolna 2016). These disparities between income levels have remained large even as rates of unintended pregnancy have decreased, and women above the poverty level have seen the sharpest decreases (Finer and Zolna 2016). Unintended pregnancy can thus be characterized as a social problem because rates are lowest for the groups with the most resources to care for a child, and highest for those with the fewest resources. Most striking, however, are how these disparities play out by race and ethnicity. Poor Black women have the highest rates of unintended pregnancy (Finer and Zolna 2016). While these rates decrease for Black women with higher incomes, Black women still experience twice as many unintended pregnancies as White women at or equal to 200% of the poverty level (Finer and Zolna 2016). This suggests that poverty alone does not explain racial disparities experienced by Black women. While it would be inaccurate and unfair to characterize all unintended pregnancies as problematic, since many women report feeling happy about a pregnancy or childbirth that was not planned (Borrero et al. 2015), as a social phenomenon they are nonetheless a strain on individual, family, and public resources (Sonfield, Kost, Benson Gold and Finer 2011). Unintended pregnancies and births represent a disproportionate share of publicly-funded births and pregnancy services (Sonfield et al. 2011). This thesis explores the relationship between 3 poverty, race, and unintended pregnancy, with a focus on how differential life circumstances might explain racial disparities in unintended pregnancy. This study involves unintended pregnancy experienced primarily by cisgender women partnered with cisgender men. It is worth noting that not only women, and not only heterosexual women, are susceptible to unintended pregnancy. Nonetheless, most studies do not explore how unintended pregnancy is experienced by LGBTQ women, trans men, or other gender-nonconforming individuals who are at risk of unintended pregnancy. That research does, however, indicate that sexual minority womenbisexual women in particularare at increased risk for unintended pregnancy (Everret, McCabe, and Hughes 2017; Goldberg, Reese, and Halpern 2016). Thus, when discussing pregnancy, this proposal refers to women as they constitute the bulk of the literature as well as the sample of the proposed study. Though they are outside the scope of this study, the pregnancy experiences and risk factors of sexual and gender minorities deserve further attention in future research. HYPOTHESES I hypothesize women will be more likely to experience unintended pregnancy if they are Black compared to those who are White, if they rent instead of own their home, if they live in apartments compared to single family homes, and if they have experienced financial difficulties or fallen behind on rent in the last six months compared to those who have not. THEORETICAL FRAMEWORK Most of the theoretical offerings surrounding unintended pregnancy are focused on individual behavior, whether that involves the choice to have unprotected sex or the type of contraception chosen. As with pregnancy, unintended pregnancy is typically understood through 4 a medical context. My goal with this study is to orient a theoretical framework toward the social contexts in which these choices occur. Rational Choice vs. Random Behavior The prevailing frameworks for understanding fertility and pregnancy are rational choice and planned behavior, or intentionality (Esacove 2008; Medoff 2014; Paton 2006). This produces the dichotomy of pregnancies that are either intended or unintended. Becker (1960) introduced an economic analytical framework to predict the impacts of income on fertility decisions, where lower incomes constrain choices and should lead to fewer births. Indeed, poorer families have fewer planned births, but more births than higher-income families overall (Becker 1960). Since its introduction, this model of rational choice is often taken for granted in analyses of fertility but is not particularly helpful in explaining unintended pregnancy and, by extension, risky sexual behavior (Paton 2006). Instead, random behavior is more applicable, considering that circumstances in which risky sexual behavior occurs is often spontaneous and most likely detached from reproductive considerations (Esacove 2008; Paton 2006). Low-income women, especially, do not perceive fertility planning in such clear and absolute ways. Borrero and colleagues (2015) find that pregnancy intentions among low-income women are not only often ambivalent, they sometimes do not exist at all. In addition, pregnancy planning is not seen as accessible among low-income women, in part because the ideal of obtaining financial security or a committed relationship prior to planning a pregnancy is not perceived as feasible (Borrero et al. 2015). Finally, there is not always a clear link between contraceptive use and pregnancy desires (Borrero et al. 2015). Aiken and colleagues (2016) propose a new framework for understanding unintended pregnancy altogether, as concepts currently used by researchers often do not reflect the complexity with which most women think 5 about pregnancy. Instead of intentions, they propose studying womens perceptions of pregnancy in conjunction with the notion of pregnancy acceptability in the context of incidences of pregnancy (Aiken et al. 2016). These attitudes reflect womens personal pregnancy desires and expectations, but these do not occur in a vacuum. Women are also managing, to varying degrees, the expectations of their partners, families, social networks and communities, and the broader society, all of which can vary considerably across racial groups. Most women express ideal circumstances under which pregnancy should occur, such as having financial stability and being married or in a committed relationship (Borrero et al. 2015; Bute and Jensen 2010). Bute and Jensen (2010) find that low-income women articulate conflicting norms around pregnancy that derive from mainstream society, authoritative sources (such as parents, teachers, and doctors), and peers; out of these, they are most likely to align with norms expressed by their peers. While authoritative and dominant norms prescribed delayed sexual activity and pregnancy, peers normalized sexual activity beginning in high school and, in some cases, childbearing outside of marriage (Bute and Jenson 2010). This is supported by the ethnographic work of Edin and Kefalas (2011), in which childbearing among poor women is an expression of love and commitment to ones partner that is often preferred over marriage. It is worth noting that, in absence of similar studies among other social classes, this finding may not be unique; women of higher classes may also respond more strongly to peer-expressed norms, but those norms may instead align more closely with mainstream and authoritative sources. All of this considered, it is important to consider the limitations of intentionality and planned behavior in approaching unintended pregnancy. It is vital to center the social and 6 personal aspects of sexual behavior when exploring the contexts in which unplanned pregnancy occurs. LITERATURE REVIEW Unintended Pregnancy As many as 45% of all pregnancies in the United States are estimated to be unintended (Finer and Zolna 2016). Unintended pregnancy has traditionally been defined as pregnancies that are either mistimed or unwanted (Finer and Zolna 2016). However, this categorization typically relies on womens retrospective reports about their intentions to conceive prior to a pregnancy (Finer and Zolna 2014; 2016). Though this is the standard method for identifying unintended pregnancies, it is not ideal. For one, recollections of past pregnancy intention can be potentially clouded by numerous factors. More significantly, womens pregnancy intentions are typically more complex than retrospective recollections allow (Aiken et al. 2016). For these reasons, standard measures of unintended pregnancy may suffer from some issues with validity. This dynamic may in part explain the high rates of unintended pregnancy observed among certain demographic groups. To explain the disproportionate rates of unintended pregnancy that Black women experience, it is necessary to review the factors generally associated with unintended pregnancy and how these factors are experienced by Black women. Broadly, these include contraception use, attitudes toward sex and fertility, relationship status, norms and culture, and external, structural factors such as poverty and neighborhood characteristics. Some analyses have found that accounting for enough of these characteristics undercuts the significant relationship between race/ethnicity and unintended pregnancy (Kim, Dagher, and Chen 2016; Kemet, Lundsberg, and Gariepy 2017). These include being under age 20 at conception, having less than high school 7 education, higher rates of prior live births, and being single, divorced, or widowed (Kim, Dagher, and Chen 2016). On the other hand, Kemet, Lundsberg, and Gariepy (2017) find no difference in pregnancy intention, wantedness, or planning by race/ethnicity among pregnant women. It is worth noting, however, that while accounting for a variety of factors helps to explain the difference between rates among races, it is still worth exploring why those factors are so disparate by race. Poverty, Education, & Race Poverty is strongly associated with unintended pregnancy. For women at or below 100% of the poverty level, 60% of pregnancies are unintended (Finer and Zolna 2016). As poverty influences unintended pregnancy, so does unintended pregnancy contribute to poverty. Unintended births partially explain the high rates of poverty for children compared to the general population. One in 6 U.S. children live in poverty, and children are the poorest age group in the U.S. (Dawson 2021). Poor women are at higher risk for unintended pregnancies, they have more children and larger families, all of which constrains their already-limited financial resources (Finer and Zolna 2016). Poor women do not necessarily desire larger families, and many poor women articulate mainstream norms around the timing and planning of childbirth (Bute and Jensen 2010; Borrero et al. 2015). However, cultural contexts and conflicting norms may complicate this issue (Bute and Jensen 2010; Borrero et al. 2015). Similarly, the introduction of federal family planning funding in the 1960s and 1970s was found to have decreased the number of children born into poverty, and these children were less likely to live in poverty as adults (Bailey 2014). Thus, the relationship between unintended poverty is bidirectional, and decreases in one will likely lead to decreases in the other. 8 In addition to poverty, unintended pregnancy can be linked to educational attainment. Women with lower levels of education experience higher rates of unintended pregnancy (Finer and Zolna 2016). Indeed, there has been a widening gap of unintended fertility between women without a high school degree and women with a college degree over the last several decades (Hayford and Guzzo 2016). Additionally, mothers education level has correlated with lower levels of unintended pregnancy as well (Kim, Dagher, and Chen 2016). Education is an important variable to consider as it relates to poverty and unintended pregnancy, because pursuing higher education may influence women to delay fertility and/or reconsider the costs and benefits of a potential unintended pregnancy. Anecdotally, this seems to have contributed to the decrease in fertility rates among younger women in recent years, who are delaying having children until finishing school or establishing careers (Tavernise, Miller, Gui and Gebeloff 2021). Poverty, of course, can influence womens access to higher education as well as their perceived access. The perceived attainability of higher education, careers, and financial stability may influence how lower-income women make fertility-related decisions. However, poverty does not fully explain persistent racial disparities. Among Black women, 64% of all pregnancies are unintended, and rates of unintended pregnancy are higher for Blacks than they are for Whites and Hispanics at each income level (Finer and Zolna, 2016). While rates decrease for all races/ethnicities as income increases, rates for Hispanics approach the same level as Whites starting at 100% of the federal poverty level (Finer and Zolna 2016). At the same time, rates for Blacks remain twice as high as the rate for Whites at or above 200% of the poverty level (38 per 1,000 women compared to 18 per 1,000 women) (Finer and Zolna 2016). In other words, as income levels increase, the disparity also increases. This mirrors other health disparities faced by Black women, such as rates of maternal mortality, in which 9 supposedly equalizing forces such as income and education do not produce the same benefits that White women experience (Petersen et al. 2019). These data underscore why this study focuses on rates of unintended pregnancy among Black women specifically as opposed to racial minority groups overall. Though low-income Blacks and Hispanics have similar outcomes and certainly face many of the same structural constraints in the U.S., they also have distinct experiences, cultures, and histories that differentiate them. In the literature on unintended pregnancy, most articles only describe race and ethnicity in terms of Black, White, and Hispanic, and few studies focus on unintended pregnancy prevalence of racial/ethnic groups aside from these three. That limited research, however, indicates that risk factors are also high for American Indians and Alaska Natives (AI/ANs) with (Rutman 2012; Urban Indian Health Institute 2016). It is worth noting that AI/ANs often face general health outcomes that parallel Black Americans, and that they have distinct experiences and challenges depending on whether they reside in or outside of tribal areas. For instance, Black and AI/AN children share the highest poverty rates by race/ethnicity, at 30.1% and 29.1%, respectively, and AI/AN women experience (Dawson 2021). Contraception Use There are various methods of contraception available in the United States, and types vary by cost, accessibility, and efficacy. Most effective are long-acting methods, such as sterilization (vasectomy or tubal ligation), intrauterine devices (IUDs), and implants. At the other end of the spectrum, condoms and other barrier methods that are only used during sex are less effective. In addition to actual efficacy, methods can vary in efficacy due to the potential of user error. Male condoms, the most common form of contraception, have a failure rate of 2% with perfect use, but the rate jumps to 13% when accounting for their typical use (Guttmacher Institute 2020). 10 This is one reason why long-acting reversible contraceptives (LARCs) like IUDs have such high efficacy rates: they can be used long-term and have a low risk of user error. However, contraceptives are not equally accessible. The most effective methods are more expensive than the least effective methods, and degrees of access vary. For instance, condoms are available at a very low cost at drugstores, birth control pills require a prescription from a physician, and IUDs can require more than one office visit. While the Affordable Care Act (ACA) made birth control more accessible for many with private or public insurance by removing copaysand, indirectly, by expanding overall access to health insurancea coverage gap remains for those without insurance. Interestingly, however, the overall rate of contraceptive use has not changed significantly since implementation of the ACA (Kavanaugh and Jerman 2018). While more women are choosing highly effective methods like LARCs, fewer women are choosing permanent methods like sterilization, with little other changes in contraceptive type chosen (Kavanaugh and Jerman 2018). Additionally, continued political attacks on both abortion and Planned Parenthood significantly impact birth control access by forcing the closure of clinics and restricting funds for the reproductive health services that these clinics offer. Rules finalized in 2019 would bar family planning clinics from receiving Title X funding, which are federal funds dedicated to supporting family planning services, as long as they continue to provide abortion services and referrals (McCammon 2019). As Planned Parenthood alone serves an estimated one third of family planning clientsdespite representing only 6% of all family planning clinics in the U.S. (Ranji 2019)these policies would further restrict birth control access for vulnerable groups, particularly those most at risk for unintended pregnancy. 11 Use of contraception varies by income level, race/ethnicity, and often, religion (Grady, Dehlendorf, Cohen, Schwarz, and Borrero 2015; Kramer, Rowland Hogue and Gaydos 2007). Black women tend to use contraception less frequently than White and Latina women, even after adjusting for demographic characteristics and access to healthcare (Grady et al. 2015). Rocca and Harper similarly find that Black women are less likely to use contraception and more likely to use less effective methods (2012). However, knowledge about contraception does not explain the difference in usage among racial-ethnic groups, as knowledge does not differ between Black and White women (Rocca and Harper 2012). Race also correlates with coercive reproductive experiences that can subsequently increase risk of pregnancy. Black women, along with Latina, multiracial, and low-income women, are disproportionately impacted by reproductive coercion (Grace and Anderson 2018; Borrero et al. 2015). Reproductive coercion refers to another person, typically a partner, limiting ones reproductive autonomy by asserting control over reproductive decisions (Grace and Anderson 2018). Often this manifests as sabotaging contraceptive use. Women have described partners throwing away condoms and flushing birth control pills down the toilet (Borrero et al. 2015). It can also encompass pressure to get pregnant or to terminate a pregnancy (Grace and Anderson 2018). In a study of contraceptive nonuse, Mosher, Jones, and Abma (2015) find that about 12% of women not contracepting prior to an unintended birth claimed that their partner did not want them to use birth control. In a qualitative study of low-income women, 45% of Black women reported having experienced some type of reproductive coercion, compared to only 17% of White women (Borrero et al. 2015). In the context of unintended pregnancy, this underscores how Black women overall may experience decreased control over their reproductive decisions that in turn enhances their risk for unintended pregnancy. 12 Sexual History Important to understanding overall rates of unintended pregnancy are varying types of adolescent sexual behavior that influence adult sexual behavior. Younger age (less than twenty years old) at first conception is associated with higher risk of unintended pregnancy (Kim, Dagher and Chen 2016). Younger age at first intercourse, while not directly associated with unintended pregnancy, is linked to higher risk of adolescent pregnancy (Biello et al. 2013). Notably, adolescents across the board are engaging in sexual, and other adult activities, later than adolescents in past decades (Twenge and Park 2019). After peaking in the early 90s, rates of teen birth and ever having intercourse are at all-time lows, with decreases among all races, income levels, and geographic regions (Twenge and Park 2019). Some of the largest drops were seen among Black adolescents, who previously had the highest rates of sexual activity but have now approached the rates of non-Black adolescents (Twenge and Park 2019). Although rates of unintended pregnancy are still highest for women in younger age brackets, the decline in adolescent sexual activity may contribute to further decreases in the overall rate of unintended pregnancy in the future. Hardships & Social Stability At least one study has explored the experience of poverty and hardships prior to or during pregnancy (Braveman et al. 2010). Hardships included financial hardships as well as life hardships such as divorce, domestic violence, incarceration, etc. (Braveman et al. 2010). The likelihood of experiencing hardships and the number of hardships experienced were correlated with income level, with nearly 60% of low-income women experiencing hardships before or during pregnancy (Braveman et al. 2010). However, this study sample includes only women 13 experiencing pregnancy and does not explore the relationship between hardships, pregnancy intention, and risk of unintended pregnancy. Social stability refers to the range of life structure and reliable routine that is protective against further situational hazards (German and Latkin 2011). Interruptions in social stability are a normal part of life, but frequent, chronic sources of instability can be disruptive to ones well-being in numerous ways. Social instability may lead to two divergent outcomes regarding the risk of unintended pregnancy: some may attempt to reduce their risk of unintended pregnancy, while others may adopt more fatalistic outlooks that result in more risk-taking behaviors. Houston Su (2019) found that women in areas with high unemployment had lower rates of unintended pregnancy, relative to no pregnancy. Environment, Housing, and Place Housing is one factor within neighborhoods that, to my knowledge, has not yet been explored as it relates to unintended pregnancy. The housing accessible to women varies by race due to historic patterns of segregation and subsequent disinvestment from predominately Black neighborhoods (Massey and Denton 1993; Rothstein 2017). Housing, especially in the broader neighborhood context, also introduces a potential of axis of instability experienced by Black Americans. Homeownership is a key component of housing security, and the Black homeownership rate has steadily remained just half the rate of Whites (U.S. Department of Housing and Urban Development 2020). Renting and housing unaffordability have both been linked to lower self-reported health (Pollack, Griffin and Lynch 2010). Exposure to public housing has been associated with higher rates of single motherhood among black high school dropouts, specifically (Shester, Allen and Handy 2018). In the context of reproductive decisions, housing insecurity in conjunction with poverty may create a social context in which planning a 14 pregnancy may seem ill-advised, subsequently increasing the likelihood of unintended pregnancies to occur. The housing context for Black Americans is inextricably linked to patterns of residential segregation, which also plays a role in health outcomes (Williams and Collins 2001). Racial and class-based segregation combine to disproportionately concentrate Black Americans in impoverished environments (Massey and Denton 1993). The concentration of multiple sites of disadvantage in these neighborhoods is key to understanding the reproduction of poverty and inequality. Decades of disinvestment from these communities exacerbates the experiences of poverty, while gentrification in these areas contributes to even more instability for residents, often leading to displacement. While neighborhood-level data is absent from the proposed analysis, the context of neighborhood differentials between Blacks and Whites is key to understanding disparate racial outcomes. The literature on unintended pregnancy generally does not explore the relationship between place and environment. Some links have been established between neighborhood characteristics and quality to outcomes such as teenage pregnancy (Crane 1991; Harding 2003) as well as other adverse reproductive health outcomes for adolescents (Decker et al. 2018). These and other studies have established place as an important variable determining health outcomes, as poverty interacts with the social environment to produce health outcomes. However, factors like segregation are not inherently deleterious for social and health outcomes. While factors like low collective efficacy and neighborhood unsafety are related to poor outcomes for adolescent reproductive health, these factors may or may not be present in segregated and/or low-income communities (Decker et al. 2018). It is also worth noting that racial minorities living in predominately White neighborhoods may also experience negative 15 health outcomes (Gibbons and Yang 2014). In the context of unintended pregnancy, impacts of segregation have not been well explored. Age at first sexual intercourse, a risk factor associated with unintended pregnancy, has been correlated with both high and low levels of segregation, depending on the type of segregation measure (Brooks Biello et al. 2013). Higher rates of sexual activity among Black adolescents are partially explained by the concentration of black families in neighborhoods with lower median incomes, suggesting that both neighborhood-level poverty and individual-level poverty also play a role in sexual health outcomes (Brewster 1994). METHODS Data To address these research questions, I used the 2012-2014 Continuity and Change in Contraceptive Use Study (CCCUS) conducted by the Guttmacher Institute. This study was designed to assess contraceptive use patterns and various issues that impact these patterns. It collected data in four waves of surveys over an 18-month period. Respondents received $10 in compensation for each wave of the study completed. A final total of 1,842 women completed all four waves of the survey, which represents 77% of the initial 4,634 women who completed the initial first wave. The sample was recruited through GfKs Knowledge Panel, which is a nationally representative household panel. Surveys were conducted online. GfK ensures computer and internet access to households recruited for their panel. The study sample consists of women of reproductive age who had potential risk for unintended pregnancy. Specifically, only women who had ever had sex with a man, were not currently pregnant, had not had tubal sterilization, and whose main partner had not had a vasectomy were included in the study. 16 Study Variables In addition to variables that typically influence unintended pregnancy, this study includes variables that measure certain types of financial and life hardships in addition to characteristics about their living environment. While it does not include neighborhood-level characteristics, it does ask respondents about housing type and whether they rent or own their home. Independent Variables Housing tenure is measured with the variable OWNHOME, which asks respondents if their living space is owned (or being bought), rented, or occupied without payment. Only owners and renters are included in the analysis. Housing security is measured with the variable RENT, which asks respondents if they have fallen behind on rent in the past six months and is asked in each wave of the survey (0=no, 1=yes). Financial security is with the variable MONEY, which asks respondents if they have experienced a worsening financial situation in the last six months, in each wave of the survey (0=no, 1=yes). Finally, HHTYPE asks about the type of housing respondents live in. Options include a one-family house (detached from any other house), a one-family house attached to one or more houses, a building with two or more apartments, a mobile home, or a boat, RV, van, etc. This is simplified into dummy variables for all one-family homes, apartments, and mobile homes. Other housing was excluded from the analysis. Dependent Variable The dependent variable in this study is experience of unintended pregnancy, is measured using the variable AVOIDPG. This variable represents a subsample of participants who report 17 having given birth in the last six months in either Wave 2, Wave 3, or Wave 4 of the survey. The correlating survey question asks respondents: This last time you became pregnant, how important was it to you to AVOID becoming pregnant at that time? Responses ranged from 1-6 on a Likert scale, 1 being not at all important to avoid pregnancy and 6 being very important to avoid pregnancy. As previously discussed, this strategy has potential benefits compared to asking respondents if a pregnancy was either unwanted or mistimed. It may more accurately capture womens intentions by allowing for a spectrum of possible answers. Control Variables Risk Factors for Unintended Pregnancy Contraceptive use and nonuse are primary risk factors for unintended pregnancy. CONSISTENT1 measures how consistently participants who experienced a recent pregnancy used their respective birth control methods in the month prior to becoming pregnant. Other key risk factors for unintended pregnancy include prior experience having an unintended pregnancy, total number of live births, age at first sexual intercourse, relationship status, and number of sexual partners in the last 30 days. These are measured by EVERUP, NBIRTHS, AGESEX, UNION/UNIONB and NSEXP, respectively. EVERUP and AGESEX are asked in Wave 1 whereas the remaining variables are asked in all waves of the survey. Ordinarily, the type of birth control used would also be important to measure as efficacy among each type varies. However, this data measures types of birth control used in the last 30 days, whereas the sub-sample includes women reporting a pregnancy anytime in the last 6 months. As a result, the type of birth control used in the last 30 days bears little relevance to the 1 Variable is named CONSISTENT in Wave 1 of the study and CONSISTEN in subsequent waves. 18 incidence of pregnancy being studied, so these variables are excluded from the analysis. Consistency of use prior to pregnancy, as measured by CONSISTENT, is more appropriate for these purposes. Demographic Characteristics Demographic characteristics include variables measuring race and ethnicity (RACEETH), poverty status (POVCAT), age (AGE), employment status (EMPSTAT), and education level (ED). POVCAT is measured in Waves 1 and 3; all other variables are measured in each wave. Analytic Strategy Data from CCCUS was collected in four waves, each as separate data files. These data files have been combined, excluding variables that are not pertinent to the overall analysis. The analysis includes three models. Model 1 includes the independent variables of race/ethnicity, housing security, housing tenure, financial security, and housing type. Model 2 adds the sociodemographic characteristics of poverty status, age, employment status, education, and age. Finally, Model 3 adds control variables related to risk factors for unintended pregnancy. SAMPLE DESCRIPTION Twenty one percent of all pregnancies in the sample were unintended, defined in the study as women who wanted to avoid pregnancy at the time they became pregnant. Black respondents were 9% of the sample. Hispanic/Latinas were 17% of the sample. Those reporting more than two races were 3% of the sample, and those selecting other race were 6%. Whites, the reference group, were 65% of the sample. 19 Six percent of the sample fell behind on rent and 18% reported financial difficulties at some point in the six months prior to the survey. Thirty-three percent of respondents lived in apartments and 48% rented their housing. Forty-eight percent owned their home, 63% lived in single-family homes, and 4% lived in mobile homes. Twenty one percent of the sample were below 100% of the poverty level, while 23% were between 100%-199% of the poverty level, and the remaining 56% of the sample were at 200% or more of the poverty level. Five percent of the sample had less than a high school education, while 14% were high school graduates, 36% have completed some college, and 45% had a Bachelors degree or higher. Eighty one percent of the sample were employed, while 18% are unemployed. Forty nine percent of respondents were married, 19% were cohabiting, another 19% were dating, whereas 11% had never been married and 2% had previously been married. The sample was between the ages of 18-39, and 26% are aged 18-24, 56% are between 25-34, and the remaining 16% are 3439. Thirty four percent of the sample have had a prior unintended pregnancy. Most respondents (96%) had one sex partner in the last 30 days, whereas 3% had two sex partners and 1% had three or more. Eleven percent of women in the sample had sexual intercourse for the first time at age 14 or younger, 65% did between the ages of 15-19, and 24% did at age 20 or older. Sixty percent of the women who reported a recent pregnancy were not using birth control in the month prior to getting pregnant because they wanted to get pregnant. Another 21% were not using birth control due to other reasons. 11% were using birth control inconsistently, and 7% were using it consistently. 20 Table 1: Descriptive Statistics for Independent, Dependent, and Control Variables Variable Mean SD Min Max Dependent Variable Pregnancy avoidance at last pregnancy 0.22 Independent Variables Black 0.09 Fell behind on rent, last 6 months 0.06 Lives in apartment 0.33 Lives in rented housing 0.49 Experienced financial difficulties, last 6 months 0.18 Control Variables Race White 0.65 Hispanic 0.17 More than two races 0.03 Other race 0.06 Education Less than high school 0.05 High school 0.14 Some college 0.36 Bachelor's degree or higher 0.45 Employment Employed 0.81 Unemployed 0.19 Union status Married 0.49 Cohabiting 0.19 Dating 0.19 Never married 0.11 Previously married 0.02 % of Poverty Level Below 100% 0.21 100%-199% 0.23 200% or more 0.56 Age Age 18-24 0.26 Age 25-34 0.56 Age 34-39 0.18 Housing Type Single family home 0.63 Mobile home 0.04 Housing Tenure Owns home 0.48 Prior unintended pregnancy 0.34 Sex Partners in Last 30 Days 1 0.96 2 0.03 3 or more 0.01 Age at First Sexual Intercourse 14 or younger 0.11 Age 15-19 0.65 Age 20 or older 0.24 Birth Control Use in Month Prior to Most Recent Pregnancy Consistent user 0.07 Inconsistent user 0.11 Non-user, wanted to get pregnant 0.60 Non-user, for other reasons 0.21 0.41 0 1 0.29 0.24 0.47 0.50 0.39 0 0 0 0 0 1 1 1 1 1 0.48 0.38 0.16 0.23 0 0 0 0 1 1 1 1 0.21 0.35 0.48 0.50 0 0 0 0 1 1 1 1 0.39 0.39 0 0 1 1 0.50 0.39 0.39 0.31 0.15 0 0 0 0 0 1 1 1 1 1 0.41 0.42 0.50 0 0 0 1 1 1 0.44 0.50 0.38 0 0 0 1 1 1 0.48 0.19 0 0 1 1 0.50 0.47 0 0 1 1 0.19 0.17 0.09 0 0 0 1 1 1 0.31 0.48 0.43 0 0 0 1 1 1 0.25 0.32 0.41 0.41 0 0 0 0 1 1 1 1 21 LOGISTIC RESULTS Table 2 presents the results of the logistic regression analysis. The dependent variable in all models is unintended pregnancy. Unintended pregnancy is measured against women who had intended pregnancies. Specifically, the study asks women how much they wanted to avoid pregnancy at the time of their most recent pregnancy. This differs slightly from the way unintended pregnancy is usually framed; for instance, the National Survey of Family Growth questions the wantedness of a pregnancy. Model 1 shows logistic regression results for all independent variables. In Model 1, Black women have 220% greater odds of unintended pregnancy compared to White women. Hispanic womens odds of unintended pregnancy are 128% greater than those of White women. Women who report having financial issues in the last six months also have 130% higher odds of unintended pregnancy than women who did not. Model 2 adds sociodemographic controls: employment, education status, poverty level, and age. Among the independent variables in this model, only Black race retains its significance, with Black women still having 220% higher odds of unintended pregnancy compared to White women. Financial issues within the last six months drops in significance and those with financial issues have 79% higher odds of unintended pregnancy than those without financial issues. Of the sociodemographic controls, only poverty level was significant. Those with income less than 100% of the poverty level had 95% higher odds of unintended pregnancy than those at over 200% of the poverty level, while those between 100 and 199% of the poverty level had 98% higher odds. Finally, Model 3 adds predictors of unintended pregnancy related to past sexual history, contraceptive use, and relationship status. Here, none of the independent variables retain 22 significance. Of the sociodemographic variables, only unemployment, having a high school degree, and age between 25-34 are significant. Those who are unemployed have 330% higher odds of having an unintended pregnancy than those who are employed. Those with only a high school degree have 72% lesser odds than those with a bachelors degree or higher of having an unintended pregnancy. Women in the 25-34 age range have 77% lesser odds of having an unintended pregnancy than women who are 35-40 years old. Women who reported not using birth control, but who were not trying to get pregnant, in the month before their pregnancy had 3,392% higher odds of unintended pregnancy compared to women using no birth control who were trying to get pregnant. Women who used birth control consistently in the month prior to pregnancy had 44,694% higher odds than women using no birth control who were trying to get pregnant. Women using birth control inconsistently in the month prior to pregnancy have 8,326% higher odds of unintended pregnancy than women not using birth control and trying to get pregnant. Finally, women who are dating have 430% higher odds of unintended pregnancy than women who are married. Collinearity tests were performed on this model, and high levels of collinearity were not found. 23 Table 2: Logistic Regression Models Comparing Odds of Unintended Pregnancy by Race, Housing Status, and Financial Issues N=351 Model 1 Model 2 Model 3 o.r./(s.e.) o.r./(s.e.) o.r./(s.e.) Independent Variables Black Hispanic Non-Hispanic, Other Race Non-Hispanic, Two or More Races Fell behind on rent, last 6 months Rents housing Apartment Financial issues, last 6 months 3.20 *** (0.95) 2.28 *** (0.52) 1.27 (0.57) 2.30 (1.01) 1.55 (0.53) 1.16 (0.24) 0.96 (0.22) 2.30 *** (0.49) 3.20 *** (0.95) 1.67 (0.48) 1.83 (0.93) 1.87 (0.95) 1.59 (0.64) 0.71 (0.19) 1.62 (0.44) 1.79 * (0.44) 1.89 (1.21) 1.55 (0.80) 1.96 (1.97) 0.61 (0.77) 0.61 (0.46) 1.05 (0.58) 1.13 (0.64) 0.93 (0.44) 1.19 (0.30) 2.48 (1.31) 1.10 (0.35) 0.81 (0.22) 1.95 * (0.62) 1.98 * (0.53) 1.52 (0.57) 0.70 (0.24) 4.30 ** (2.37) 1.85 (1.93) 0.28 * (0.18) 0.33 (0.19) 2.81 (1.76) 1.51 (0.77) 0.42 (0.31) 0.23 * (0.17) Sociodemographic Controls Unemployed No high school degree High school degree Some college Less than 100% poverty level 100-199% poverty level 18-24 years old 25-34 years old Unintended Pregnancy Risk Factors Experienced prior unintended pregnancy 14 years old or younger at first intercourse 15-19 years old at first intercourse 2 sex partners in last 30 days 3 or more sex partners in last 30 days Not using birth control prior to last pregnancy, not trying to get pregnant Consistent birth control use prior to last pregnancy Inconsistent birth control use prior to last pregnancy Dating Cohabiting Never married Constant 1.01 (0.45) 0.29 (0.23) 2.12 (1.17) 1.06 (0.96) 4.76 (7.80) 34.92 *** (23.27) 447.94 *** (415.17) 84.26 *** (61.39) 5.43 ** (3.35) 1.28 (0.66) 11.59 (15.50) 0.15 *** 0.15 *** 0.02 *** (0.02) (0.05) (0.01) LR Chi-Square 58.25 76.84 194.66 R-squared 0.07 0.11 0.51 Note: *p<.05, **p<.01, ***p<.001; White, Home owners, Single-family home dwellers, No issues paying rent last 6 mos., No financial issues last 6 mos. are reference groups. 24 DISCUSSION This study sought to examine the potential impacts of housing factors on unintended pregnancy, particularly unintended pregnancy among Black women. It was hypothesized that being Black, having insecure housing arrangements such as renting or apartment living, and having recently fallen behind on rent or having financial difficulties would all increase the likelihood of experiencing unintended pregnancy. For the most part, these hypotheses were not supported. While Black women experienced higher odds of unintended pregnancy even when controlling for demographic factors, the significance of these odds disappeared once sexual health risk factors were accounted for in the final model. All housing-related factors failed to achieve significance, and recent financial difficulties were only significant before controlling for sexual health risk factors. Indeed, in the final analysis, falling behind on rent and having financial difficulties no longer increased the odds of having an unintended pregnancy, in addition to losing significance. There are many potential explanations for these results. First, these variables may be unrelated to unintended pregnancy after all. This is understandable given some of the limitations of this data, discussed later. These housing variables attempted to account for some known racial disparities in housing. However, apartment living can vary dramatically depending on quality of housing as well as neighborhood-level factors. The same can be said for renting instead of owning. Recent financial difficulties had a stronger association with unintended pregnancy than the specific experience of falling behind on rent. The proposed hypotheses predicted that financial instability would increase the risk of unintended pregnancy by generating instability in other areas; for instance, lapsed birth control usage due to cost, or generating more irrational, 25 risky behaviors. In this case, such financial instability is not explanatory when controlling for more relevant sexual risk factors, and likelihood of unintended pregnancy decreased. Here, financial instability instead may be related to more protective, rational behaviors to prevent unintended pregnancy. Regarding race, some of the literature has demonstrated that certain risk factors explain the higher rates of unintended pregnancy for Black women. It was expected that these, in addition to some demographic factors, would change the relationship between these variables. That said, as indicated by the second model, Black race maintained a significant relationship with unintended pregnancy even when accounting for poverty level, even as the significance for Hispanics/Latinas disappeared. This suggests that the sexual risk factors included in Model 3 help to explain racial disparities more so than poverty. Black women may exhibit more of these risk factors independent of their socioeconomic status. Unemployment had an unexpected relationship with unintended pregnancy in this analysis, reaching significance in the final model. Some women who are unemployed may be choosing not to work to care for children. Though this would likely be more associated with intended pregnancies, perhaps the lack of career-related restraints influences womens attitudes toward pregnancy and choices around contraception. It is also possible that women who are unemployed are more likely to define a pregnancy as unintended simply because their employment situation makes them unlikely to plan for an intended pregnancy. Another unexpected result was found in education level and age. In the final model, women with a high school degree or who were 25-34 years old had significantly lesser odds of unintended pregnancy than women with a bachelors degree or higher (77%) and those 35-39 years old (72%), respectively. Both are significant in the opposite direction than expected. It is 26 possible that the stronger risk factors for unintended pregnancy help to explain the differences between education levels. The odds ratio for having a high school degree decreased from having 10% higher odds to 72% lower odds between Model 2 and Model 3. It is less clear why women 25-34 have lower odds of unintended pregnancy than lower women in the sample, however. Perhaps more women in this age range have stronger and more consistent attitudes toward contraceptive use or are more likely to desire a pregnancy. The strength of various sexual health risk factors is important to note in this analysis. A group of controls associated with birth control use and pregnancy intention all had very high odds of increased risk of unintended pregnancy. This can in part be explained by the fact that the reference group were women who were not using birth control because they were trying to get pregnantby definition, these womens pregnancies were likely intended. Subsequently, all other groups were much more likely to describe their pregnancy as one they wanted to avoid, regardless of their consistency in birth control usage. There were several limitations in using secondary data for this study. The research question had to be adjusted to account for limitations in the dataset, which did not focus on housing or social context, but instead on contraception use and the potential factors that impact consistency in usage. The data lacked specific geographic information, only asking respondents about their state of residence and whether they lived in a metro or non-metro area. The results of this study, along with the current literature on unintended pregnancy, present multiple opportunities for further research. While this and other studies have found that sexual health decisions and risk factors moderate the influence of race on unintended pregnancy, it is still worth exploring the relationship between unintended pregnancy and race. These sexual risk factors do not occur in a vacuum, and the data suggests there is a higher concentration of 27 these risk factors among Black women. Qualitative research may more be more appropriate to delve into Black womens experiences around reproduction and sexual health decisions. On a structural level, the impacts of housing inequality may be better explored through research that addresses segregation and its role in concentrating these unintended pregnancy risk factors in Black communities. Additionally, most research into unintended pregnancy is concentrated in medical and health research. Given the relationship between unintended pregnancy and family inequality, more research should lend a sociological approach to these topics. It is important to contextualize the issue of unintended pregnancy as a social problem, particularly when exploring its relationship to race. The reproduction of Black women has been heavily policed, historically and currently, from the state and intimate partners alike (hooks 2000). The goal of this project was to further explore the relationship between race and unintended pregnancy. But it is vital to acknowledge that the problems posed by unintended pregnancy do not necessarily have to be resolved by direct interventions to reduce the number of unintended pregnancies. Anti-poverty measures, particularly designed to support children in poverty, can ameliorate the effects of unintended pregnancies on families financial resources. Indeed, relief efforts tied to the COVID-19 pandemic have significantly lowered child poverty rates, albeit temporarily (Parolin, Collyer, Curran and Wimer, 2021). 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