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... The Meaning of Chronic Wounds in Patients in Long Term Care 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: Rochelle M. Bourassa, DPT, CLT-LANA, CWS Copyright December 9, 2021 By: Rochelle M. Bourassa, DPT, CLT-LANA, CWS All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Laura Santurri, PhD, MPH, CPH Committee Member ______________________________ Caroline Gwaltney, PT, DPT, CWS 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 ______________________________ THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE The Meaning of Chronic Wounds in Patients in Long Term Care Rochelle M. Bourassa Department of Interprofessional Health & Aging Studies, University of Indianapolis 1 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 2 Abstract Background: Chronic wounds result in significant challenges that can affect quality of life (QoL). Though, there is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population using a qualitative approach. Ultimately, by examining residents lived experiences living with a wound in a skilled nursing facility, QoL in patients can be more fully characterized and clinical outcomes maximized. Purpose: The purpose of this study was to understand older adults lived experience with a chronic wound in a long-term care facility. Method: Adults aged 65 or older with chronic wounds were recruited from a long-term care unit and participated in individual semi-structured interviews. The researcher utilized Colaizzis seven-step coding process to analyze the interview data and develop overarching themes. Results: Seven participants completed the study, including five females and two males with chronic wounds. Participant ages ranged from 65 to 92 years old. Wound etiology varied with three pressure injuries, two post-operative, one injury, and one secondary to chronic venous insufficiency. Four major themes and nine sub-themes emerged which help to characterize the participants lived experiences. The four major themes were: lack of independence, confinement/limitations, interruptions, and emotional sequelae. Conclusion: Chronic wounds contribute to feelings of confinement and social isolation for residents in longterm care facilities. Improved mobility and independence may also increase their chances of returning home, subsequently decreasing feelings of confinement, and resulting in fewer interruptions in daily activities. Keywords: chronic wounds, long-term care facility, older adult THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 3 Acknowledgments There are many people who have helped shape this dissertation into what it is today. I will be forever grateful to my committee. I would like to thank my chair, Dr. Lisa Borrero, who supported me, pushed me when I needed it, shared her positive energy, and helped me stay on track. I would also like to thank my analysis expert, Dr. Laura Santurri, who shared her expertise, time, and constant strength that helped push me forward. Finally, I would like to thank my content expert, Dr. Caroline Gwaltney, for sharing her knowledge and expertise, challenging me to think outside the box, and ensuring the use of the oxford comma (lol). I am forever grateful for the support of this committee. I would like to thank my fianc, who assisted me whenever I needed to have the time to work on my schooling, supported me during this process, and always offered words of encouragement when I needed it the most. I am also grateful for my five amazing children, two of which were born during my journey to obtain my DHSc degree. They were my cheerleaders and inspiration as I made my way through my courses and finally completed my research. I hope I have set an example to them that you can always pursue and achieve your goals. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 4 Table of Contents Title Page.1 Abstract2 Acknowledgments3 Table of Contents.4 Chapter 1: Introduction8 Problem Statement...8 Purpose Statement8 Research Question...8 Significance of the Study.....9 Definition of Terms.9 Chapter 2: Literature Review.10 Lower Extremity Wounds..10 Wounds and the Older Adult.12 Categorizing Deficits.12 Qualitative Research Gap..13 The Impact of Research in Long Term Care Facilities.15 Chapter 3: Method.16 Study Design..16 Participants.17 Setting17 Procedures..18 Sampling and Recruitment.18 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 5 Informed Consent..19 Data Collection..20 Data Management & Analysis..20 Rigor/Trustworthiness..22 Chapter 4: Results23 Theme 1: Lack of Independence..24 Lack of Mobility..24 Inability to Return Home.26 Theme 2: Confinement/Limitations.27 Medical Co-morbidities....28 Wound Severity30 COVID-19 Restrictions30 Theme 3: Interruptions.31 Interruptions in Time32 Interruptions in Relationships...32 Interruptions in Daily Routine..32 Theme 4: Emotional Sequelae..33 Chapter 5: Discussion..35 Theme 1: Lack of Independence..37 Theme 2: Confinement/Limitations.38 Theme 3: Interruptions.....40 Theme 4: Emotional Sequelae.41 Limitations...43 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Summary.44 Future Research..45 References..46 Table 1: Participant Characteristics53 Table 2: Theme Table.54 Appendix A: Recruitment Flyer.55 Appendix B: Informed Consent.56 Appendix C: Interview Guide60 6 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 7 The Meaning of Chronic Wounds in Patients in Long Term Care Chronic wounds result in significant challenges for patients, caregivers, and healthcare facilities (Hurd, 2013). The prevalence of chronic wounds is estimated to be at least 6.5 million people in the United States, and associated costs exceed $25 billion annually (Gould and Fulton, 2016; Sen et al., 2009). Chronic wounds result in significant issues that affect quality of life (QoL), including pain, discharge, odor, and limited mobility (Augustin et al., 2017). Patients also may experience sleep disruption, body image changes, increased social isolation, and psychological disorders (Ren et al., 2020). Negative psychosocial and physical health issues can result from chronic wounds, including stress, anxiety, lack of sleep, isolation, and body image perception (Hopman et al., 2014). According to Jaul (2010), there are many factors that can contribute to the development of a chronic wound, including skin changes that occur during the natural aging process, changes in the infrastructure of the skin resulting from chronic disease states, and malnutrition impacting the skin and immune system. Despite these factors, the effects of immobility contribute significantly to the outcome of the wound and increase the risk of wound development due to increased shearing forces, pressure, friction, and increased vulnerability of the skin when someone is immobile (Jaul, 2010). Gould and Fulton (2016) support the findings of risk that Jaul (2010) established, including the effects of aging on the skin and the effects of comorbidities increasing the older adults risk for a wound. A wound's ability to heal is not only affected by the physical environment; a patient's poor psychological status has been found to delay healing (Walburn et al., 2017). How older adults experience and feel about the wound healing process is also important, as the unanticipated clinical course of a chronic wound can result in feelings of frustration and THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 8 emotional upset (Jaul, 2010). The development of a wound in the older adult population is multifactorial and includes both intrinsic and extrinsic factors (Gould & Fulton, 2016). Existing research has established that psychological stress negatively affects wound healing and should also be addressed (Robinson et al., 2017). There is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population. Existing studies in the literature examine this from the perspective of community-dwelling older adults; some focus only on lower extremity wounds. Other studies simply categorize the deficits rather than attempt to understand the patients lived experiences. There appear to be no qualitative studies focusing specifically on the chronic wound experience from the view of those residing in long-term care or skilled nursing facilities. Research is needed in long-term care to fully understand older adults' experiences living with chronic wounds in this setting. Problem Statement Chronic wounds place a considerable burden on the patients who experience them and take a significant financial toll on the United States healthcare system (Olsson et al., 2019). Although previous research has focused on the efficacy of treatment interventions, wound dressings, and the wound's etiological presentation (Tollow, 2018), there is a lack of research addressing the qualitative meaning of living with a chronic wound for older adults, specifically in the long-term care setting. Purpose Statement The purpose of this phenomenological study was to understand older adults lived experience with a chronic wound in a skilled nursing facility. Research Question THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 9 This study addressed the following primary research question and sub-questions: What meaning do individuals in the older adult population living in skilled nursing facilities ascribe to living with a chronic wound? o How do older adults living with a chronic wound in a skilled nursing facility characterize their day-to-day functioning? o How do older adults living with a chronic wound in a skilled nursing facility perceive their quality of life? Significance of the Study This study's primary significance was to give residents the ability to speak to their experiences while living with a chronic wound. Understanding and validating the residents experiences is important in wound healing (Dudfield, 2019). Ultimately, by examining residents' lived experiences in the skilled nursing facility, QoL in residents can be more fully characterized and, in turn, clinical outcomes maximized. Understanding the meaning residents ascribe to living with a chronic wound in a long-term care setting can help tailor interventions, treatments, and clinical approaches to ensure positive resident experiences, compassionate care, and improve outcomes. Definition of Terms Chronic wound: Wounds that fail to heal within 4-8 weeks (van Rijswijk & Polansky, 1994) Older adult: An individual 65 years of age and older (Hurd, 2013) Skilled nursing facility/long term care facility: A group of institutions ranging from those that provide rehabilitation to those providing chronic care to the sick and elderly (Donelli & Vuotto, 2014) THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 10 Quality of life (QoL): A general perception of wellbeing, happiness, and satisfaction by an individual (Woo et al., 2018) Literature Review Chronic wounds are a significant contributor to health care costs and have devastating effects on patients (Olsson et al., 2019). Wound care prevalence is a multibillion-dollar, worldwide issue affecting 6.5 million people in the United States alone (Sen et al., 2009). Two percent of people in the United States are living with a chronic wound (Jung et al., 2016). Lower Extremity Wounds Existing research on the effects of chronic wounds varies between wound type, resident demographics, and study population. However, most studies have only focused on lower extremity wounds (Cunha et al., 2017; Hopman et al., 2014; Roaldsen et al., 2011; Stewart et al., 2018; Tollow, 2018). Lower extremity wounds secondary to chronic venous insufficiency reach their peak prevalence between 60-80 years of age, making them a considerable issue for older adults (Stechmiller et al., 2019). Quality of life in those with chronic lower extremity wounds has also been a focus in the literature. A longitudinal study by Hopman et al. (2016) assessed chronic lower extremity wounds in community-dwelling older adults. They attempted to look at healthrelated QoL factors to aid in wound healing, including pain using the McGill pain scale, autonomy using the EuroQol 5-Dimension Instrument (EQ-5D), and QoL using the 12-Item Short Form Survey (SF-12). They determined chronic lower extremity wounds resulted in negative health-related QoL including impaired sleep, pain, limitations with mobility, and social isolation. Factors related to improved QoL included independence with mobility, decreased difficulty with activities of daily living, and fewer baseline comorbidities (Hopman et al., 2016). THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 11 Similarly, a study by Harlin et al. (2009) assessed QoL in community-dwelling individuals with chronic lower extremity wounds through the use of the health-related quality of life (HRQoL) tool. Patients reported feelings of overall frustration and difficulty with sleep, mobility, and anxiety suggesting that chronic lower extremity wounds result in negative effects on quality of life (Harlin et al., 2009). It is apparent that QoL is negatively impacted in these patient populations, but what does that mean for the QoL and lived experience of those patients living with other etiologies and residing in long-term care facilities? Many older adults have multiple medical comorbidities, medical complexities, and wounds from varying etiologies. Narrowing the research to only focus on lower extremity wounds can cause a deficit in the research regarding chronic wounds. In the skilled nursing population, a variety of wound types lead to severe debility, increased care, and burden to staff and families (White-Chu et al., 2011). For this reason, it is important to assess a variety of wound types in the older adult population in long-term care facilities; however, research on this is limited. Community-dwelling older adults face different challenges to QoL than older adults living in skilled nursing facilities; however, the literature on lower extremity wounds has primarily focused on the community-dwelling older adult population and not those older adults residing in long-term care facilities. In one example, Hopman et al. (2014) examined associations between sociodemographic, clinical factors, and QoL in a group of community-dwelling people with a mean age of 65+/- 17 years. Results of the study found that those patients with chronic leg wounds demonstrated impaired QoL secondary to pain, impaired mobility, poor sleep, depression, limited work capacity, and social isolation. Similarly, the mixed methods approach by Cunha et al. (2017) also only included participants in a community setting, 28.4% of whom THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 12 were still working. Although the authors of these studies looked at the clinical limitations and QoL changes within this population, they failed to address the lived meaning and experiences the patient may have felt. They also narrowed their population of study to individuals in the community-dwelling population, potentially missing additional physical and psychological factors those living within a long-term care facility may experience. Understanding the lived experience of older adults in the skilled nursing environment with various chronic wounds can allow for improved outcomes, increased patient satisfaction, and a more patient-specific, tailored care plan. Wounds and the Older Adult Wounds, including arterial, venous, neuropathic, and pressure ulcers, account for serious morbidity, especially in older adults (Beitz & Goldberg, 2005). Older adults are at an increased risk for chronic wounds secondary to increased exposure to pathological factors that develop due to the aging process (Jaul, 2010). The risk of developing a pressure ulcer increases significantly for those over 70; most pressure ulcers (70%) occur in those over 70 years of age (Jaul, 2010). This increase could be attributed to the increased vulnerability to chronic disease older adults face with age as well as challenges resulting from the normal aging process (Jaul, 2010). As the population ages and the age of mortality increases, so does the resource burden associated with managing wounds (Sprakes & Tyrer, 2010; Hopman et al., 2014). People are living longer with wounds that are slow or do not heal, which increases demand on healthcare resources, including staff and expenses to care for them (Gould and Fulton, 2016; Jaul, 2010). Both the financial burden and the physical impairments associated with chronic wounds make addressing this a priority in our health care system. Categorizing Deficits THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 13 Several authors have categorized physical consequences and resulting psychosocial implications related to chronic wounds in the older adult population. Stechmiller et al. (2019) categorically analyzed their results and found most patients with chronic wounds experience pain, fatigue, leg swelling, and sleep disturbances. In a mixed-method study by Cunha et al. (2017), researchers attempted to look at how participants lives changed after developing a chronic leg wound. They looked at older adults with a mean age of 76 years old and assessed QoL, the patients comprehension of the disease, and the patients related psychosocial feelings resulting from chronic leg ulcers and resulting life changes. The study determined life changes resulting from chronic leg ulcers included sadness, anger, depression, and loneliness in more than 30% of the participants. (Cunha et al., 2017). Although consolidating limitations and challenges into categorical groups may provide an understanding of the patient's physical and psychosocial deficits, it does not allow us to truly understand how the patient is experiencing these challenges. Simply putting their deficits into a category does not help us understand how they are living with this chronic wound, how this lived experience impacts them, and how it can help us adapt our interventions and aid in wound healing. Qualitative Research Gap Qualitative research focusing on wound care is particularly sparse, especially studies examining the older adult population. Specifically, when looking at older adults in skilled nursing facilities, there is a gap in the literature addressing the lived experience of older adults who are dealing with chronic wounds. Qualitative literature focusing on wound care is mainly centered on the physical effects on the patient, with a lack of review of the experience the patient feels and the psychological impact the wound may have on the patient as a whole (Tollow, 2018). Only one qualitative study within the last 15 years focused on individuals in the long-term THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 14 care setting living with chronic wounds. Specifically, Beitz & Goldberg (2005) assessed older adults' lived experience living with a chronic wound in either assisted living communities or long-term care facilities. The researchers assessed 16 participants, both men, and women, with various wound types, including arterial, venous, diabetic, pressure, and unknown etiologies. Beitz & Goldberg (2005) found clusters of themes that can impact the patients QoL, including living with pain, both pain from wound treatments and from the wound itself, as well as the effects of losing mobility and changing agility (Beitz & Goldberg, 2005). Participants also expressed concerns surrounding receiving care, including trusting the caregiver, accepting care, and disliking wound-related care (Beitz & Goldberg, 2005). The authors also revealed findings related to living and aging, specifically, regarding the loss of a spouse, diminishing abilities, and reflecting on their life; whether it was a positive and healthy upbringing, or they were underprivileged growing up (Beitz & Goldberg, 2005). Other themes included experiencing altered sleeping habits from pain and discomfort, changing eating patterns due to diminished appetite, and needing to eat well to promote wound healing. Some participants reflected on the cause of their wound, including reflection on chronic illnesses related to wounds or feeling guilty for sustaining an injury (Beitz & Goldberg, 2005). Other themes included feeling frustrated with the wound healing and treatment for wound healing, having to adjust and tolerate constant treatment interventions, all while attempting to stay positive and hopeful for improvements in the wound (Beitz & Goldberg, 2005). This study provides a basis for further research on a patient's lived experience with a chronic wound in skilled nursing facilities. It exposes the need to distinguish how the patient perceives these deficits and how they view themselves since the wound's development. The role the wound has played in the patients lived experience and what this means to them also needs to be assessed. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 15 The skilled nursing facility setting is an important focus for research as residents in skilled nursing facilities are the most vulnerable to chronic wounds (Spraker & Tyrer, 2010). Although the Beitz and Goldberg study included some participants from the long-term care population, it was not fully specific to this patient population. The Impact of Research in Long Term Care Facilities The lack of research on residents with chronic wounds within the skilled nursing setting is apparent. Skilled nursing facilities are a common destination when patients with chronic wounds are discharged from an acute care hospital. More than three million people enter a skilled nursing facility in the United States directly from an acute care hospital each year (Sorkin et al., 2018). The Centers for Medicare and Medicaid Services (CMS) is the governing body regulating skilled nursing facilities; CMS ensures quality standards, establishes guidelines, and monitors outcomes (Levine et al., 2005). Although research on the lived experience with chronic wounds is lacking in this setting, skilled nursing facilities are closely monitored by CMS. Related to wounds, CMS specifically monitors pressure injuries in long-term care settings, including prevention, risk assessment, and intervention from an interdisciplinary view (Levine et al., 2005). Although acquired pressure ulcers are a focus of CMS, chronic wounds of varying diagnoses are prevalent and result in a burden to the healthcare system in skilled nursing facilities (White-Chu et al., 2011). Research efforts must be focused on this setting as the burden of chronic wounds will continue to rise with the aging population and earlier development of chronic illnesses (Olsson et al., 2018). It is evident that there is a lack of an in-depth understanding of residents perspectives on their experience living with a chronic wound in the long-term care setting. The residents perspectives, lived experiences, and the meaning the wound has on them in all realms are THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 16 important pieces in the overall care for these residents. Two widely utilized wound QoL assessment tools are the Wound QoL and the PU-QoL tool. These tools are designed to identify QoL issues in patients with chronic wounds. They assess some similar categories that Beitz and Goldberg (2005) identified in their research. For example, the Wound QoL tool asks the patient to identify from not at all to very much how they have been impacted in the last seven days in the areas of pain, odor, drainage, sleep, the burden to others, happiness, worry, fear, mobility, activities of daily living, and a financial burden (Augustin et al., 2017). Similarly, the PU-QoL tool attempts to capture the patients health assessment within the past seven days based on how much bother the wound has been for them from not at all to a lot (Gorecki et al., 2013). It assesses items such as pain, drainage, odor, sleep, mobility, activities of daily living, appearance, and social participation (Gorecki et al., 2013). Both tools attempt to quantify the impact a chronic wound has on a persons QoL, but they have limitations. They do not identify settingspecific QoL implications, the meaning these experiences have on the patient, and how to incorporate these experiences into wound management and treatment. Acknowledging and understanding how chronic wounds affect QoL can eventually lead to the discovery of more holistic interventions that improve healing outcomes. Research has demonstrated how a chronic wound can physically affect a patient; however, what does this mean for their self-image, perception of care, and life experience? These questions remain to be answered in the literature. Method Study Design THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 17 This qualitative study incorporated a phenomenological design to examine the meaning of living with chronic wounds for older adults living in a long-term care setting. A phenomenological approach allowed the researcher to identify the essence of the human experience about a phenomenon described by those that have experienced it (Creswell, 2018). Specifically, an existential phenomenology was utilized to determine the nature of the reality that encompassed the lived experience of those with chronic wounds (Phillips-Pula et al., 2011). Participants Participants in this study included older adults with chronic wounds residing in a longterm care facility. Inclusion criteria for this study consisted of individuals who were 65 years of age or older, as this has been identified as an at-risk population in long-term care (Sprakes, 2010). Participants must have had a wound of any etiology for more than 4 weeks, which denotes wound chronicity (Beitz & Goldberg, 2005, van Rijswijk & Polansky, 1994). Participants must have also been their own Healthcare Power of Attorney (HCPOA) and demonstrated the ability to understand the consent and study descriptors, as determined by the Global Deterioration Scale (GDS) with a value of 4 or less. This ensured participants were able to fully consent and participate in the research and interview process. Given the nature of this type of study, a smaller sample size of 3-10 participants was sought and deemed sufficient to provide an in-depth analysis of this specific phenomenon (Creswell & Poth, 2018). Specifically, Malterud et al. (2015) described the use of information power to determine whether a study requires a larger or smaller sample size. Information power can be supported by the study aim, sample specificity, an established theory, and quality of the dialogue (Malterud et al., 2015). In this study, a narrow study aimed with specific research questions offered information power to support a smaller sample size. By utilizing inclusion THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 18 criteria to increase the specificity of the sample population, support of the selected sample size was increased. An established method of study, an existential phenomenological design, provided further support for the selected sample size. Finally, the study-specific interview guide, designed to elicit rich, in-depth responses, guided and supported clear communication between the researcher and the participants (Malterud et al., 2015). Setting The setting for the study was a 153-bed facility comprised of short-term rehabilitation and long-term care units. The facility offers a full spectrum of post-hospital stay healthcare services, including nursing care and rehabilitation services. Participants were selected from this facility based on the inclusion criteria to participate in this research study. Although the researcher is a contract employee in this facility, the researchers primary role is in the short-term rehabilitation unit. The focus of this study took place in the long-term care units to help reduce bias from familiarity with the potential participants. Procedures Sampling and Recruitment A purposeful sampling strategy was utilized to provide the researcher with individual perspectives and experiences relevant to the research question (Jameel et al., 2018). Specifically, a purposeful criterion sampling strategy was utilized to select participants that met the specified inclusion criteria (Palinkas et al., 2015). This was useful in this study because it allowed for information-rich cases that exhibited the phenomenon of interest. Participant recruitment began after approval was received from the Institutional Review Board at the University of Indianapolis. The researcher identified potential participants via the use of an internal wound care list routinely provided by the facility wound care nurse. The THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 19 facility wound care nurse distributed a recruitment flyer (Appendix A) to potential participants to eliminate any potential coercion by the primary researcher. The recruitment flyer directed residents to contact the researcher via phone or via their nurse should they be interested in participating in the study. The recruitment flyer also described the purpose of the study and participation criteria. All residents that were interested in participating contacted the researcher via their nurse and a time was set to meet with them in their room to maintain privacy. Those that expressed interest met with the researcher during the designated time to screen for inclusion criteria; in doing so, the researcher took note of their age, wound chronicity, and GDS score to determine the level of dementia and the residents level of cognitive ability. Residents that met the inclusion criteria received details about the study in written form via the informed consent form (Appendix B). The researcher reviewed this form by describing the studys purpose and expectations for participation, including an audio-recorded interview with a scheduled follow-up session to review and confirm general findings. Participants were also made aware that their participation was entirely voluntary and that their care would not be impacted in any way, whether they decided to participate or not. The risks and benefits of participation were shared as well as methods utilized to maintain confidentiality. They were also told that they could withdraw from the study at any time. They were given the chance to ask questions of the researcher and express any concerns. Those who agreed to participate then had an interview time scheduled to take place at their convenience. Informed Consent At the beginning of the interview, the primary researcher reiterated key points on the informed consent form (see Recruitment) and allowed the participant to ask any questions that THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 20 they had. After that, signed consent was obtained using the informed consent form (Appendix B) was obtained from each participant before beginning the interview. Data Collection Data was collected via in-depth, individual semi-structured interviews. Participants were interviewed face-to-face in the residents room to ensure comfort and privacy and encourage participant openness. A COVID-19 mitigation protocol, as outlined by the facility and Center for Disease Control (CDC), was followed to ensure participant and researcher safety. Interview questions were gleaned from a prepared, semi-structured interview guide focused on understanding participants lived experiences and the meaning of living with chronic wounds (Appendix C). Throughout the interview process, participants had the opportunity to seek clarification and ask questions as needed. Interview questions began in a broad, open-ended manner to gain initial rapport with the participant and allow them to freely describe their experiences. The interview then progressed to an in-depth, intimate style, incorporating probing and follow-up questions to gain a deeper understanding of the meaning the wound had upon the participant physically and psychologically. Interviews ranged from 30 to 60 minutes in length. Upon the conclusion of the interview, participants were informed that the researcher would be contacting them either by phone or in-person meeting, per their choice, to review the interpretations of the study and ensure the researcher's interpretation of the participants experiences were accurate. Data Management & Analysis Audio recordings of participant interviews were transcribed verbatim utilizing the audioto-text service, Temi. Memoing was utilized during this time to allow the researcher to make notes about emerging themes as the data came together and to reflect on any thoughts, feelings, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 21 or assumptions experienced during data collection and analysis. In this way, the process of memoing allowed the researcher to capture and preserve data that may prove significant later (Birks et al., 2008). Once an initial transcription was ready, the researcher reviewed it for accuracy and de-identified it. Completed transcripts were exported from Temi using a numerical code as a file name to ensure participant privacy. They were then uploaded to Dedoose (version 8.3.43), a qualitative data analysis software program, for confidential storage. Audio files were saved in password-protected cloud storage. Based on the seven steps of phenomenological research by Paul Colaizzi as cited in Phillips-Pula et al. (2011) and Finlayson et al. (2018), the first step in conducting phenomenological research is for researchers to immerse themselves in the data to get a sense of the interview before breaking it into components. Accordingly, the researcher read the transcripts multiple times to develop a sense of storyline and a true understanding of the emerging themes and first impressions. Keeping the study's purpose and research question in mind helped link the data to the storyline (Stuckey, 2015). The second step after reading and re-reading participant transcripts is for the researcher to assess the data for words or phrases connected to the research question. The third step in the phenomenological analysis is to formulate meaning to the statements and provide broad categorization (Finlayson et al., 2018, Morrow et al., 2015). To carry out these second and third steps, the researcher and a second, independent coder with extensive experience in qualitative data analysis and dissemination, engaged in independent coding of a section of the first transcript. By utilizing a second coder, the researcher decreased the possibility that assumptions of the primary researcher drove the decision-making process.(Creswell & Poth, 2018). The researcher and the second coder then met to discuss their codes and come to a consensus about the components of a codebook. Both the researcher and the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 22 second coder further used that foundation of a codebook to independently code another section of the transcript. The codebook consisted of participant data, parent and child codes, code definitions, locations of data within each transcript, and representative participant quotations. The finalized codebook was set up into Dedoose for further analysis. The researcher used Dedoose to cluster common experiences for all participants, in keeping with step four of Colaizzis process (Phillips-Pula et al., 2011). By clustering those experiences, themes can be developed to help demonstrate commonalities across cases (Ayres et al., 2003). The researcher then completed steps one through four with the other interview transcripts and engaged in the fifth step by using the previously identified clusters to generate overarching themes (Phillips-Pula et al., 2011). To do this, the researcher formulated an exhaustive description of clusters in the first four steps (Finlayson et al., 2018). The sixth step involves establishing a structure of the phenomenon (Morrow et al., 2015). To this end, the researcher developed a summary of the participants experiences (Phillips-Pula, 2011). analyzed Finally, in step seven, the researcher conducted member checking by reaching out to the residents by their preferred method, either by phone or meeting them in their room at the longterm care facility, to have them review their own interview data for accuracy. Based on participant feedback, there were no changes to incorporate. Rigor/Trustworthiness Henderson and Rheault (2004) describe Gubas model of trustworthiness in qualitative research as having four components: credibility, transferability, dependability, confirmability. Credibility is the ability to establish confidence that the results are true and credible (Henderson & Rheault, 2004)., To ensure credibility, the researcher and a second, independent coder with extensive experience in qualitative data analysis and dissemination, were involved in coding, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 23 analysis, and theme development to ensure trustworthiness (Creswell & Poth, 2018). Credibility was also increased by the utilization of memoing and engagement in member checking. Dependability is to ensure that the findings are repeatable (Henderson & Rheault, 2004). To ensure the dependability of the study, a thorough description of the study methods and data analysis was clearly outlined (Forero et al., 2018). This ensured that the sample was indicative of the population of the study (Henderson & Rheault, 2004). To ensure confirmability, the researcher utilized a second coder which decreased the possibility that assumptions drove the decision-making process. Confirmability is the extent that confidence would be confirmed or corroborated by other researchers and it includes reflexivity. Reflexivity is the process by which the researcher reflects on their biases, values, and background and how this affects their interpretations during their research (Creswell, 2018). Transferability is the degree to which the results can be generalized or transferred to other contexts or settings. To ensure the transferability of the study, a detailed description of the participant characteristics and their context was provided, as well as selecting the participants by utilizing a purposive sampling strategy. Member checking occurred after data analysis to ensure the credibility of the findings and accurate interpretation of the data (Creswell & Poth, 2018). This was done by contacting participants via their preferred method after the data was interpreted. The researchers interpretation of the participants experiences was reviewed to ensure accuracy. The researcher and a second, independent coder were involved in coding, analysis, and theme development to ensure trustworthiness. By utilizing a second coder, the researcher increased trustworthiness by validating the data for accuracy (Creswell & Poth, 2018). Results THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 24 Seven participants completed the current study, all of whom met the inclusion criteria (Table 1). Of those participants, five were females, and two were males. Participant ages ranged from 65 to 92 years old. Scores on the global deterioration score for cognitive function ranged from no cognitive decline (1) to age-associated memory impairment (2). Wound etiology varied with three pressure injuries, two post-operative, one injury, and one secondary to chronic venous insufficiency. The locations of the wounds varied from the sacrum, chest, thighs, and lower extremities. Participants were identified by letter and number to protect their privacy. All interviews were conducted face-to-face and followed the facility COVID-19 protocol. Twelve parent codes were identified in the data, including comorbidities, COVID-19, emotions, constant care, financial burden, interruptions, mental/spiritual health, relationships/support, treatment, mobility/limitations, perceptions of ability, and perceptions of care. Eight of those parent codes were further broken down to contain child codes, for a total of 46. Based upon the analysis of the parent and child codes, four major themes and nine subthemes (Table 2) emerged, which helped to answer the research question. The four major themes were: lack of independence, confinement/limitations, interruptions, and emotional sequelae. Theme 1: Lack of Independence The first primary theme that resulted from the analysis of participant interviews was a lack of independence. Participants perceived a lack of independence resulting from reliance on and necessity to have staff and caregiver assistance. Participants also reported that they could not perform functional tasks at an independent level. Two sub-themes emerged from an overall perception of lack of independence: a lack of mobility and an inability to return home. Lack of Mobility THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 25 A sub-theme that emerged related to lack of independence included a lack of mobility. A lack of mobility arose from restrictions residents faced from their wounds. For example, many residents were unable to reach their wounds to provide their wound care. Some had pain resulting from their wound that restricted their ability to move, and others had underlying weaknesses from being immobile that further limited their mobility. All participants reported needing an assistive device for support and physical assistance from staff. This was resultant from immobility attributed to their wound from factors such as drainage requiring their legs to be constantly elevated, pressure sores needing positional changes, and a lack of mobility due to wound-related edema and pain. For example, participant 4L stated: I dont get around good. Participants reported the need for care to perform daily tasks such as bed mobility, transfers, and activities of daily living. For example, one participant reports she was unable to take a shower without assistance because she not only needed the physical help, but she had to have staff dress the wound before and after she bathed. Participant 1M stated: If I take a shower, I had to make sure that it was covered so I could do what I had to do. Another participant described her thigh wound as impacting her ability to ambulate to the bathroom. Participant 5C stated: I can't get up and walk into the bathroom because my legs rub together. Some participants even reported an inability to ambulate, requiring mechanical lifts to get out of bed and transfer to and from a chair. This was not only from wound-related pain but also from edema and weakness. Participant 4L stated: I don't like being dependent on other people, but you accept it Its awful, I can't do it myselfthat lack of independence. An inability to function independently on a day-to-day basis was a theme throughout for all participants. Inability to Return Home THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 26 Participants also described their lack of independence as an inability to return to their homes. Many lacked the support from others to care for their wounds. For example, participant 6C stated, yeah, she tried, when describing his wife attempting to care for his pressure injury at home. Participant 2H described difficulty with the recommended wound care products, we didn't have the proper dressings available, so we were using incontinence pads. Participant 3P described his sons unsuccessful attempt to heal his wound, I have three boys, and they were taking turns and, and they kept those bandages on every day, every night. All participants had physically limiting conditions that impacted their ability to stay within their homes for care. They also reported difficulty in mobility resulting from the conditions that were limiting them physically, which made it difficult to remain within their home, resulting in admission into the long-term care facility. It was difficult to tease apart whether their wound itself or a combination of this and their physical conditions secondary to their co-morbidities were the primary factors. Comorbidities that reduce physical mobility predispose people to wounds while wound-related complications can reduce mobility, making these issues highly interrelated. The mobility deficits reported included an inability to ascend and descend stairs to safely enter and exit their homes. As participant 5C stated regarding her wound on her thigh limiting her ability to take steps as well as her obesity and weakness limiting her functionally, I couldnt get down the front steps. So, youre trapped in your own home. Similarly, participant 2H reported that it was hard to get out of the house and do stuff; it was draining so heavily. One participant described an inability to get into and out of a car for transportation due to pain in her lower leg wound and lower extremity weakness. Participant 1M reported: THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 27 I was afraid of sliding [out of the car], and then everybody's paranoid about taking me and it's just like, it's not worth it. You stay home. But it's not, you know, is that really where I'd like to be? Id like to be out sometime, even if it was just for a ride. One participant had a strong desire to be independent and attempted to return to her home. Her perception was that she would be able to care for herself and move around independently. She was unsuccessful, resulting in a need to call emergency medical services as she could not independently get out of her chair. Ultimately, she had to return to the facility. She did not solely relate her need to return to the facility due to the wound but a combination of physical limitations, limited mobility, and an inability to care for herself. Participant 1M reported: And in my mind, I said, oh, I just go home. I can get my lift chair. It didn't work I was just sitting in an awkward position. I could not stand; my brain wasn't letting me do that. So, they called emergency medical services and they came in. Theme 2: Confinement/Limitations The second theme that arose from the analysis of participant interviews relates to the participants reported feelings of confinement and the experience of limitations in day-to-day functioning related to their wound. This theme also included three sub-themes; medical comorbidities, wound severity, and COVID-19. Participants recognized the effects of the wound on all aspects of their daily care. For example, covering the wound to be able to bathe, keeping their legs elevated to decrease drainage, wearing clothing that is conducive to bulky dressings, or staying confined to their room due to the perception of the risk of further infection were some examples of the effects of the wound on daily care. Participant 1M reported: It was confining, you know, and if I take a shower, I had to make sure that it was covered so I could do what I had THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 28 to do. Similarly, participant 2H reported: As long as it was draining, they had thought it would be better if I dont go outand this kept me kind of confined to my room. Another participant described being confined to his room due to his wound. Participant 3P stated: Im bedridden, and Ive got a jar [negative pressure wound therapy canister] on one side and a jar [negative pressure wound therapy canister] on the other, and I cant go anywhere. Medical Co-morbidities Many reported that the wound itself was not the only contributing factor that resulted in limitations in day-to-day functioning and feelings of confinement. A combination of participant co-morbidities paired with the wound resulted in limitations in their mobility, function, and ability to participate in their daily self-care. All participants had medical comorbidities, as seen in the full list provided in Table 1. These co-morbidities included, but were not limited to, obesity, lymphedema, sepsis, neuropathy, atrial fibrillation, hypertension, congestive heart failure, and peripheral vascular disease. Among these, obesity, lymphedema, sepsis, neuropathy, and diabetes mellitus were perceived by the participants to be the most influential in their ongoing limitations related to the wound, as they were seen to delay healing and limit day-to-day functioning. For example, participant 4L stated: I havent been showering in the shower because I was so afraid, I've had two falls. This was further clarified with the participant during member checking; the participant referenced her obesity and neuropathy resulting in a history of falls. This limited her mobility due to a fear of falling and fear of re-injuring her wound. When discussing limitations to wound healing, participant 3P reported: And my blood sugar wasn't good. You know, I probably should have been on insulin earlier, maybe. This was further clarified during member checking as to if his limitations in healing were attributed to his lack of managing his diabetes, and he confirmed this. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 29 Obesity was related to feelings of limitation by many participants, both the obesity resulting in wounds as well as obesity limiting the participant physically. For example, participant 5C stated: I would say probably my obesity is the big one because I retain water, and if I had taken care of myself, you know, when I wasn't retaining water, I would've never gotten those little blisters, which burst all the time. Participant 1M reported that she is limited because of her size and because of my size, you know, they don't want me falling on no floor. She also reported feeling limited from her obesity. When asked if the wound was the limiting factor in leaving her room, she stated: It's also my other issues that I have that inhibit me to do certain things. Another participant, 2H, described an interaction before coming into the facility. She reported one doctor saw her for her wounds, but she felt that he did not further treat her due to her size. She felt that her lack of outpatient care limited her ability to stay in her home as further care was needed. She was admitted to the hospital for wound-related sepsis and then admitted to the skilled nursing facility for wound care. I got extremely frustrated with him, and that was the last time I visited there because he said, I can't do anything more for you, you have to lose weight. That's the only way it's going to get healed, and they discharged me. I still had a humongous wound on my leg. Wound Severity Participants identified wound severity to be a factor in feelings of confinement/limitations. The severity of the wound with complaints of pain, for example, was a factor for many participants. Participant 5C stated: that [the wound] was very, very painful. Similarly, participant 2H reported: I felt like dying. I was going through so much pain all the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 30 time. Limitations resulting from pain in the wound and during treatments were further clarified during member checking. Participants clarified that the pain resulted in a reluctance to leave their room due to the discomfort. These feelings of confinement can affect the participants' day-to-day functioning and perceptions of their quality of life. For example, participant 1M reported: I just dont go out into the hall. Another participant (5C) described her quality of life (QoL) by stating: You know, you sit around and think, why me and how am I going to get out of this? And why didn't I die? Should I die? Participants also reported that excessive drainage, the need for multiple bandages resulting in a bulky appearance, and feeling self-conscious also resulted in feelings of isolation and confinement. Participant 4L reported about leaving her room with her wound: I was very apprehensive. COVID-19 Restrictions In addition to the impact the wound had on participants, many also shared concerns related to COVID-19 that further confounded the feeling of confinement produced by having a wound. Some participants also reported a lack of wanting to interact with other residents. Participant 1M stated: My stuff is one thing, but, and I'm afraid if I go to that dining room, that's going to be an issue for me. And so, Id just as soon stay here, especially at this stage of the game. This statement was further clarified with the participant during member checking to gain a complete understanding of why she chose not to exit their room for meals. The participant further explained that it not only took a lot of assistance from staff to get her up and out of bed, but then there was an added risk for developing COVID-19 if they were interacting with other residents. The impact COVID-19 had on participants' mobility outside of their rooms was hard to tease apart from wound-related mobility restrictions. Both the wound and COVID-19 played a part in participants exiting their rooms and interacting within the facility. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 31 Participants also reported feelings of confinement and limitations due to the COVID-19 pandemic and facility restrictions. This included the restrictions the facility had placed on visitors; visitors were not allowed into the building at the beginning of this study during the peak of the pandemic. In addition, limitations on outings were put in place due to the risk of COVID19 in the community resulting in the facility only allowing medically necessary appointments. The facility itself also posed a risk to the residents, as the facility had residents and staff that tested positive for COVID-19. As a result, mitigation strategies were put in place. For example, if a resident needed to leave the facility for an appointment, they were required to wear appropriate personal protective equipment (PPE) and had to be placed in isolation upon returning for 10 days. During the duration of the study, the facility continued to limit visitors coming into the building. Participants reported feeling socially isolated and restricted to their rooms for most of the day. It was difficult to differentiate if the primary limiting factor was the COVID-19 restrictions or a combination of this and the wound, as participants referred to both contributing to a feeling of social isolation. Some stated the wound itself limited their participation in activities and events outside of their room due to drainage, fear of infection, potential odor, and negative perceptions others may have of them. For example, participant 5C stated regarding the appearance of her wound, When I see that, I cant even think about the scarring thats going to be on my leg. Participant 1M stated: I dont know if it will ever be right. Participant 2H also stated: It was draining so heavily. Participants also noted that the increased risk of COVID-19 infection was limiting them from wanting to leave their rooms. For example, participant 6C said: You don't want to go out and about; you haven't had the urge to, because you got to wear that mask and worry about all that COVID stuff. Thus, although it may not be the only factor, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 32 COVID-19 played a role in contributing to participants' feelings of confinement and social isolation, negatively affecting QoL. Participants reported a fear of the COVID-19 virus as well as further infection to their existing wounds. For example, participant 1M stated: I mean, it [wound] was wide open. Theme 3: Interruptions The third theme depicts participant perceptions that chronic wounds caused interruptions in their normal routines. These interruptions to normal routines were further categorized into sub-themes. These sub-themes included: interruptions in time, interruptions in relationships with family, and interruptions in daily routines. Interruption in Time All participants felt a sense of interruption in time, whether from time taken out of their day for the care of their wound or a sense of time lost dealing with the entire healing process itself. Participant 1M stated: It [the wound] does require a bit of attention. Similarly, participant 2H stated: It is intense, constant care. Interruptions in time were also felt by participants related to their relationships with their families. For example, participant 2H reported: I was missing out on stuff, doing activities with other people being stuck in my room so often. This interruption may be attributed to a combination of the time it took to care for the wound and the COVID-19 facility restrictions. Given that participants attributed an interruption in time to both, it was difficult to differentiate the most influential factor. Interruption in Relationships Participants also reported not wanting to interrupt their family members to care for them. Many participants acknowledged that caring for their wounds takes a significant amount of time. They described that their families have other responsibilities, and they did not want to interrupt THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 33 those responsibilities. For example, participant 4L stated: I mean, it's been a long time, I haven't seen that much of her cause she doesn't have the time. This was further clarified during member checking to assess these concerns. Predominately, participants felt that their family members have other responsibilities, and they did not want to interrupt their other responsibilities to have them care for them. Another participant stated: You get lazy after a while; you just don't want to interrupt your day, you know? Interruption in Daily Routine There was a mixed report about how the wound interrupted the participants' daily routine. The majority of participants felt that the time it took to care for their wound interrupted their daily routine, placing an interruption in their normal day-to-day activities. For example, participant 1M stated: for a while, they were wrapping it, to keep the bandage on, and then the wrapping would fall off, and the bandage would be open, and it's like, oh geez. Similarly, participant 2H reported: It just interrupts my daily life, to where the dressing just gets changed and then it has to be changed again. However, one participant felt that caring for their wound was just part of their normal routine at this point. Participant 5C stated: Yeah, it's just part of the routine. Theme 4: Emotional Sequelae The fourth theme that emerged from the data relates to the participant's perceptions of the emotional consequences of living with a chronic wound. Many participants reported feelings of loneliness and depression. For example, participant 6C stated: I feel, kind of low, I cant do much. Similarly, participant 5C said: I mean, I could just feel the depression pulling me right down. Participants reported feeling down or depressed due to not being able to live at home. Participants also reported limitations their family members have, such as transportation issues THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 34 and family obligations limiting their ability to come in and see them, even for a window visit. One participant reported that her spouse was unable to visit due to his medical issues. Another participant said his wife still worked, which limited her ability to make time to visit. These factors played a role as to why a family member was not able to come to visit. Therefore, it could not solely be attributed to their wound or facility restrictions, as personal family matters also contributed to this. In addition, many participants reported anxiety and worry related to their wound prognosis and interventions they may or may not have experienced. For example, one participant reported anxiety when she was faced with the decision about having surgery and opted not to have the procedure done due to fear. Participant 1M reported: They told me one time that they would probably have to do plastic surgery on that leg, and I said, I don't think so, not these legs. Another participant reported worry about his negative pressure wound therapy device. He worried about who would change it and when it would be changed. He also reported that, due to issues at the hospital when the negative pressure wound therapy was placed, he was more aware of the need for someone trained to manage it. Participant 3P stated regarding his wound vac care: It only takes one little spot where the tape doesnt seal and then the air leaks in there, and there are only certain people that know how to do that. There were also reports of frustration with the length of time it has taken to heal their wounds, as well as not being able to care for the wound themselves at home and requiring admission to the facility. For example, participant 2H reported: it was frustrating because everything would stop, it stopped getting smaller, and the drainage would continue. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 35 Despite the fear, worry, and anxiety many have faced, all participants reported improvements in their wounds, positivity about being in the facility, and the care they have received. Participant 5C reported: It [the wound] is healing, but I cared for it for seven months and nothing was done. Now that I've been in here, theyre very active at cleaning and dressing it and it's coming along wellI'm having a difficult time, but Ive had tremendous help here. I really can't say enough about this place, it has been very, very good to me and I can get out of bed now. While discussing the care they have received, participants had very positive reports. For example, participant 1M reported about her wound care: they took very good care of it. Similarly, participant 3P stated: they know their stuff. All participants reported that the healing of their wounds could be attributed to the positive, knowledgeable, and constant care they are receiving at the facility. Participants also expressed a perception of relationship development while being in the facility. Receiving regular and daily care from the facility caregivers, staff, and therapists contributed to the development of new relationships. For example, participant 5C stated: It gives you somebody else to talk to, and somebody else to see. Participant 1M said: And there again, I've made very nice friends through all this, you know, through that stuff I can think, well, you know, this is kind of nice. I keep in touch with the nurses that I had at homecare. Participant 2H stated: It increased my relationships actually because it brought more people into my life, the caregivers and the nurses that came into my life. Discussion There is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population. Research focused on those living within THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 36 skilled nursing facilities with chronic wounds is particularly sparse. As such, the purpose of this existential-phenomenological study was to examine participants' lived experiences and increase the understanding of the meaning residents ascribe to living with a chronic wound in a long-term care setting. This study highlighted the need for research in long-term care to fully understand older adults' experiences living with chronic wounds in this setting. Approval was received from the Institutional Review Board at the University of Indianapolis for this study prior to beginning recruitment activities. The study took place in a 153-bed, rehabilitation center, consisting of a short-term unit and a long-term care unit. Participants in this study included older adults with chronic wounds currently residing in the long-term care unit. Inclusion criteria for this study consisted of individuals who were 65 years of age or older. Participants had a wound of any etiology for more than 4 weeks. All participants were their own Healthcare Power of Attorney (HCPOA) and demonstrated the ability to understand the consent and study descriptors, as determined by the Global Deterioration Scale (GDS) with a value of 4 or less. A factor that played a unique role in carrying out this research study was the global COVID-19 pandemic. The primary researcher received the COVID-19 vaccination, was tested weekly for COVID-19 at the request of the facility and maintained compliance with the facility and the Centers for Disease Control and Prevention COVID-19 guidelines. The effects of COVID-19 not only affected how the researcher accessed participants, but the participants also faced restrictions that fluctuated during the study due to changes within government regulations. For example, visitation restrictions were put into place, residents were not able to leave the facility for leisure, and residents were not able to venture into the halls for socialization. In the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 37 end, the meaning of living with a chronic wound in a long-term care facility was informed by the experience of simultaneously living through the COVID-19 global pandemic. In this study, four major themes and nine sub-themes emerged which reflected the meaning that residents living in a skilled nursing facility ascribed to living with chronic wounds (see Table 2). Overall, there was a lack of independence, feelings of confinement/limitation, interruptions to daily life, and emotional perceptions experienced by participants. Understanding these themes and how residents in skilled nursing facilities evaluate their quality of life (QoL) enables healthcare providers to improve clinical outcomes, including resident satisfaction. Theme 1: Lack of Independence Every participant living with a chronic wound in the current study reported a lack of independence, affecting their QoL. Both residents with and without wounds in long-term care facilities may face limitations in mobility and an inability to return home for various reasons. In keeping with this, individuals in this study, all of whom had chronic wounds and resided in a long-term care facility, reported a decrease in their level of independence. A study by Hopman et al. (2016), noted that independence with mobility was related to QoL in those living with chronic wounds in the community. Specifically, the authors explained that factors related to improved QoL included independence with mobility, decreased difficulty with activities of daily living, and fewer baseline comorbidities. Although the study by Hopman, et al. (2016) took place with community-dwelling older adults, the results are consistent with the findings of the current study, which focused on residents residing in long-term care facilities. The findings of this study support research on resident perceptions of independence, particularly that a lack of independence results in a negative perception of QoL (Hopman et al., 2016, Harlin et al., 2009). That is, participants reported a lack of independence, a lack of mobility, and an inability to return THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 38 home resulting in the need for constant care to care for the wound and also perform daily tasks such as bed mobility, transfers, and activities of daily living. Participants in this study reported requiring assistance for mobility tasks. A study by Jaul (2010) demonstrated that the effects of immobility contributed significantly to wound outcomes and wound development due to increased shearing forces, pressure, friction, and increased vulnerability of the skin when someone is immobile. The risks of further breakdown and/or an inability of the wound to fully heal increases when a patient is immobile (Hopman et al., 2016, Jaul, 2010, Harlin et al., 2009, Beitz & Goldberg, 2005). A benefit to those residents in a longterm care facility is the access to the required assistance for mobility to help counteract the negative effects of immobility. Participants with a chronic wound in a long-term care facility have access to a level of care and assistance that community-dwelling people with wounds do not, and in this study, participants recognized the benefit of the assistance they received regarding wound healing. Those who need greater mobility assistance to promote wound healing may not receive the necessary care they need at home, leading to poorer healing outcomes. This highlights the value of a long-term care setting for those with chronic wounds and mobility restrictions. By increasing participant mobility, clinical outcomes can be improved by facilitating wound healing, fostering independence, and increasing resident perceptions of their level of independence in their day-to-day functioning. Although participants had negative feelings about a lack of independence, all participants recognized that the assistance they received with mobility and caring for their wounds led to positive outcomes regarding wound healing. All participants described positive perceptions of their wound healing. There are factors related to residing in a long-term care facility that can positively affect wound healing including 24-hour care, assistance for mobility restrictions, and THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 39 expert wound care. These reflect unique, positive implications of residing in a long-term care facility not experienced by those in the community facing similar wounds. Theme 2: Confinement/Limitations In the current study, feelings of confinement/limitations resulted in a negative perception of ones QoL. Participants feelings of confinement/limitations resulted from a combination of medical co-morbidities, wound severity, and COVID-19 factors. Existing research has demonstrated that chronic wound-related factors, including pain, discharge, odor, and limited mobility, significantly affect QoL (Augustin et al., 2017). In this current study, participants described that chronic wounds resulted in feelings of confinement affecting QoL secondary to limited participation in activities and events outside of their room. Similar to the findings of Augustin et al. (2017), this was due to drainage, fear of infection, potential odor, and the fear of negative perceptions others may have of them. The findings of this study determined individuals residing in a long-term care facility experience reduced QoL due to confinement-related issues, at least in part, due to wound-related factors. Clinicians can foster improved QoL by focusing on factors that can be adjusted to improve residents feelings of confinement/limitations. A variety of advanced wound dressings are available to mitigate the factors discussed previously that negatively affect quality of life. For example, dressings containing activated charcoal can neutralize wound odor, allowing residents the opportunity to socialize without embarrassment. Antibacterial dressings can further assist with reducing wound odor and the risk of infection. Advanced super absorbent dressings can manage a significant amount of drainage, prolonging wear time while preventing leakage from heavily draining wounds. All these options can reduce a residents feeling of confinement due to THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 40 wound-related issues. Finally, silicone-based adhesives and the use of topical or oral medications can be used to reduce procedural-related wound pain, improving overall QoL. As clinicians, there is an awareness of the numerous effects of the COVID-19 global pandemic on the healthcare environment. It must be recognized that the pandemic-related restrictions that were placed on residents in long-term care facilities also contributed to feelings of isolation and confinement in these residents. In the current study, it was impossible to identify which feelings of isolation and confinement were related to the wound, the pandemic-related restrictions, or a combination of both. More research is needed to better elucidate the impact of chronic wounds on this feeling of confinement. Further research should take place within longterm care facilities outside of a global pandemic. Theme 3: Interruptions Participants in this study described interruptions to their day-to-day lives as having to do with interruptions in time, interruptions in relationships, and interruptions in daily routine. Residents in long-term care facilities may face interruptions in their day due to therapy visits, medication passes, and other care activities. Participants in this study described further interruptions in their day-to-day lives related to wound and dressing changes. These interruptions are unique to residents in long-term care facilities with chronic wounds and are likely in addition to other interruptions. This theme has not been previously identified within the literature, perhaps due to limited research performed in this setting, and appears to be exclusive to those residents residing in long-term care facilities. Perhaps interruptions experienced by these residents are due to the amount of care they require, which is why they are in the long-term care facility in the first place. It could also be in part due to those in the community having more control over their schedule. For example, they can decide when to change their own dressing or have input into THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 41 when home health caregivers come to see them. Perhaps those in long-term care facilities feel a lack of control over their schedule in general. Clinicians need to be cognizant and understanding of the time it takes out of the residents day, how it affects their already limited time with family and friends, and acknowledge the perceptions the resident may have on their lack of control in their day. Skilled nursing facilities can assist with decreasing the perception of interruptions to residents daily life and relationships by setting established routines for wound care treatments. In some facilities, including the current study facility, the timing of residents wound care can fluctuate on a day-to-day basis, depending upon the schedule of the wound care nurse. Involving the resident in scheduling wound care treatment appointments could be an effective strategy to mitigate the feeling of unexpected interruptions to the residents lives. When this is not possible, providing as much advanced notice of planned care is advised. The facility can also increase visitor support and be encouraging of family support. However, considering the restrictions COVID-19 placed upon the facility, other means of communication between the resident and their family such as virtual visits may be another viable option to consider. Theme 4: Emotional Sequelae In the current study, many participants reported feelings of loneliness, depression, or feeling down due to living with a chronic wound. This is similar to the results of a study by Cunha et al. (2017) in which it was determined that life changes resulting from chronic leg ulcers included sadness, anger, depression, and loneliness in more than 30% of their communitydwelling participants. Even though residents in this study lived in a long-term care facility, the participants had similar perceptions as those living within the community. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 42 Further, many participants reported anxiety and worry related to their wounds. This is also supported in the literature, as existing research has established that psychological stress negatively affects wound healing and, thus, should be addressed (Robinson et al., 2017). A study by Hopman et al. (2014), determined that QoL in participants in community-dwelling settings was affected by feelings of frustration, mobility, and anxiety. Although the current study was conducted with adults in a long-term care facility, the findings support that wounds result in perceived negative effects on QoL. A wounds ability to heal is not only affected by the physical environment but also a patients poor psychological status (Walburn et al., 2017). These stressors were evident when looking at participants' perceptions of QoL. This studys results revealed that residents perceptions of their QoL, including the domains of mobility, independence, and feelings of confinement, were negatively affected by their chronic wounds. As such, a combination of residents feelings of depression and feelings of social isolation could negatively impact their wound healing. This studys results are also supported in a study by Hopman et al. (2016) in which it was determined that chronic lower extremity wounds resulted in negative health-related QoL due to pain, social isolation, and mobility limitations. Although the Hopman et al. (2016) study occurred in the community-dwelling adult population, comparisons can be made to this study as the results are similar despite the difference in the participant population setting. The COVID-19 global pandemic also needs to be considered as it could have magnified the issue of social isolation with the participants in this study. The emotions identified in the current study align with themes developed by Beitz & Goldberg (2005). The researchers in the Beitz & Goldberg (2005) study identified chronic wound factors that impact a patients QoL in community and long-term care settings, including THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 43 the effects of losing mobility, changing agility, and living with pain from both wound treatments and the wound itself. Similarly, this study found negative factors in QoL due to immobility and wound-related pain. In contrast to the Beitz & Goldberg (2005) study, participants in this study reported positive perceptions of their wound healing and a sense of support from the staff at the facility. Participants felt their caregivers were knowledgeable, and new, positive relationships developed between facility staff and participants. Beitz & Goldberg (2005) found that participants had concerns surrounding receiving care, including trusting the caregiver and accepting care. This was not a finding in the current study. In contrast, positive perceptions were expressed by participants in the current study. This may be attributed to the fact that residents in long-term care facilities recognize their needs and the impact that their wounds have on their care needs. Also, another significant factor could be the amount of time that residents have to develop relationships with their caregivers, as residents in long-term care facilities have caregivers available 24 hours per day. Further, those within the community may have family members completing their care, whereas, in a long-term care facility, care is performed by a skilled provider. This may explain the differences in trust developed between participants in this study and their providers compared to the participants in the Beitz & Goldberg (2005) study. Because this study is limited to one facility, further research is indicated in a variety of skilled nursing facilities to examine perceptions of care and the lived experience of older adults living with a chronic wound. A residents emotional state should be routinely assessed due to the emotional factors related to having a chronic wound. This is also supported in the literature, as existing research has established that psychological stress negatively affects wound healing and should be THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 44 addressed (Robinson et al., 2017). It is recommended that clinicians utilize tools such as woundrelated QoL measures to determine a residents emotional health and to determine if a further referral is indicated to the proper support systems, such as a social worker or psychologist. Limitations A potential limitation of this study is the risk of researcher bias and perception of coercion during recruitment, as the researcher was employed at the facility in which the study took place. Attempts to decrease this risk were made. As the researcher worked occasionally in the short-term rehabilitation unit of this facility, the focus of this study took place in the longterm care units to help reduce bias from familiarity with the potential participants. The distribution of the recruitment flyer to residents by the wound care nurse instead of the researcher was also utilized to decrease coercion. Also, to decrease potential bias, the researcher utilized a second, independent coder with extensive experience in qualitative data analysis and dissemination. In doing so, the researcher helped minimize the role that the researchers assumptions may have played in her interpretation of the results (Creswell & Poth, 2018). Finally, the use of memoing ensured that the researcher was able to capture and keep track of personal thoughts and assumptions and, thus, limit researcher bias throughout data analysis (Henderson & Rheault, 2004). Another potential limitation within this study was the effects of the COVID-19 global pandemic. As results were compared to prior literature, the COVID-19 global pandemic was a new factor within this study that had not previously been a factor in the existing literature. Attempts were made to focus on wound-related factors, but the influence of the pandemic-related restrictions impacted the participants lived experiences and perceptions. Future Research THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 45 There is a lack of qualitative research assessing patients lived experiences with chronic wounds, specifically in the long-term care setting. The findings of this study contribute to this limited area of research. However, the findings of this study were limited to one facility located in a rural area. Given this, there is a need for further qualitative research with a more diverse sample to gain a broader perspective on the impact of living with a chronic wound. For example, including participants with diversity in characteristics such as short-term versus long-term facility status would allow for a combination of residents staying short-term and long-term and may lead to a difference in perspective. Variations within facility locations would also enhance the diversity of the sample, for example, residents within rural versus metropolitan settings. Based on the study results, the researchers provided specific suggestions for how clinicians in skilled nursing facilities can improve residents wound healing and overall QoL. These suggestions included monitoring resident QoL and emotional state and eliciting more mobility within these individuals. It was further recommended that long-term care facilities decrease interruptions to residents daily life and relationships by setting established routines for wound care treatments. Further research is needed to determine how these changes may impact residents perceptions, wound healing, and overall QoL. The COVID-19 pandemic placed additional stressors, changes in routines, and limitations upon residents in long-term care facilities. The effects of COVID-19 could not be exclusively separated from some of the findings in this study. Given this, additional research, not in the context of a global pandemic, is needed to assess the specific impacts of chronic wounds. Summary Chronic wounds result in a lack of independence, feelings of confinement/limitations, interruptions in day-to-day activities, and emotional sequelae with residents in long-term care THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 46 facilities. While all these factors affect residents in long-term care facilities, they can also affect those in the community living with chronic wounds. Thus, the importance of addressing these factors can provide a benefit to all patients with wounds. Further, chronic wounds lead to feelings of confinement and social isolation for residents in long-term care facilities. This was also amplified by the COVID-19 pandemic. Although changes can be elicited to the wound-related confinement and social isolation barriers, the effects of the COVID-19 pandemic on resident emotional perceptions and social isolation, with or without wound involvement, should be further studied. A lack of mobility can be both a result of having a wound and/or a precipitating factor in wound development. Non-wound-related comorbidities may also play a role in decreased mobility, complicating the ability to attribute this theme solely to the wound. Regardless, care in skilled nursing facilities should focus on increasing resident mobility to mitigate the negative effects seen with immobility with all residents, as improved mobility can improve wound healing. Improved independence and mobility may also increase their chances of returning home, subsequently decreasing feelings of confinement and resulting in fewer interruptions in day-to-day activity. Perhaps the most meaningful difference between residents residing in long-term care facilities and those community-dwelling older adults was the perception of positive care felt by those in the long-term care facility. All participants reported positive, knowledgeable, and constant care received while in the long-term care facility. 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Wounds International, 9(3), 614. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 54 Participant Characteristics Table 1 Participant Characteristics Gender Female 73 Age Wound Etiology Injury Female 65 Chronic Venous Insufficiency 1 Male 92 Post-Op Surgical 1 Female 87 Pressure Injury 1 Female 70 Post-Op Surgical and Chronic Venous Insufficiency 1 Male 72 Pressure Injury 2 Female 88 Pressure Injury 2 1 GDS Score Co-Morbidities Lymphedema Obesity Atrial Fibrillation Depression Anxiety Hypertension Congestive Heart Failure Chronic Venous Insufficiency Lymphedema Obesity Atrial Fibrillation Chronic Obstructive Pulmonary Disease Diabetes Mellitus Anxiety Hypertension Bipolar Disorder Hypertension Infection Diabetes Mellitus Atrial Flutter Peripheral Vascular Disease Coronary Artery Disease Congestive Heart Failure Atrial Fibrillation Hypertension Edema Fluid Overload Diabetes Mellitus Sepsis Obesity Atrial Fibrillation Hypertension Chronic Kidney Disease Congestive Heart Failure Edema Sepsis Cerebral Vascular Accident with hemiparesis Chronic Kidney Disease Peripheral Vascular Disease Coronary Artery Disease Atrial Fibrillation Diabetes Mellitus Myocardial Infarction Degenerative Disc Disease Malnutrition THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Table 2 Theme Table Theme Lack of Independence Confinement/Limitations Interruptions Emotional Sequelae Definition Participants reporting difficulty, inability or limited independence in day-to-day tasks Participants reporting feelings of confinement, limitations with activities, or feelings of isolation Participants reporting feelings of disruption or interruption in their day-to-day lives Participants reporting emotions related to their wound, wound treatment, and/or day-to-day lives Sub-Themes Lack of mobility Inability to return home Medical comorbidities Wound severity COVID-19 Interruption in time Interruption in relationships Interruption in daily routine 55 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Appendix A: Recruitment Flyer 56 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 57 Appendix B: Informed Consent KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS The University of Indianapolis is requesting your participation in a research study to understand and validate the patients lived experience while living with a chronic wound in a long-term care facility. Your consent to participate in this study is voluntary and consent can be withdrawn at any point in the research process. Your care will not be impacted in any way should you chose to participate or not. The study consists of a recorded in-person interview, maintaining COVID-19 mitigation protocol. Interviews will take approximately 45-60 minutes and your identity will remain completely confidential. A brief follow-up meeting of approximately 30 minutes will clarify and discuss the researchers interpretations of the themes drawn from the initial interview. Participants will not directly benefit from participation and no risks or discomforts have been identified for potential participants. CONSENT TO PARTICIPATE IN RESEARCH STUDY The Meaning of Chronic Wounds in Patients in Long Term Care Study Principal Investigator (PI): Dr. Lisa Borrero UIndy Email: borrerol@uindy.edu UIndy Telephone: (317) 791-5944 Lisa Borrero, Ph.D., and Rochelle Bourassa, DPT, CLT-LANA, CWS at the University of Indianapolis (UIndy) are conducting a research study. You were selected as a possible participant in this study because you are an older adult with a chronic wound currently residing in a long-term care facility. Your participation in this research study is voluntary. Why is this study being done? The purpose of this qualitative research study is to understand older adults lived experience with a chronic wound in a skilled nursing facility. This study's primary significance is to give patients the ability to speak to their experiences while living with a chronic wound. Understanding and validating the patients experiences is important in wound healing. Ultimately, by examining patients' lived experiences in the skilled nursing facility, quality of life in patients can be more fully understood and, in turn, maximize clinical outcomes. Understanding the meaning of living with a chronic wound in a long-term care setting for patients can help tailor interventions, treatments, and clinical approaches to ensure positive patient experiences, compassionate care, and improve outcomes. What will happen if I take part in this research study? THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 58 If you volunteer to participate in this study, the researcher will ask you to do the following: Participate in a 45-60 minute interview with the researcher, which will be audio recorded. o 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 meeting to clarify and discuss the researchers interpretations of the themes drawn from the initial interview. Consent for the researcher, Dr. Bourassa to access your medical record solely for purposes related to the research study to determine wound details, chronicity, history, and etiology. How long will I be in the research study? Participation will take a total of about 45-60 minutes for the initial interview. Additional time for follow-up discussion at a later date will take approximately 30 minutes to confirm and clarify the researchers interpretation of the information shared during the initial interviews. 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? Although there is no direct benefit to participating, you may feel a sense of value related to your ability to share your thoughts and perceptions related to living with a chronic wound in a long-term care setting. The results of the research may provide a better understanding about the meaning of living with a chronic wound in a long-term care setting, which in turn, could help tailor interventions, treatments, and clinical approaches to ensure positive patient experiences, compassionate care, and improve outcomes in the future. 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. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 59 The written interview transcript will be de-identified and stored confidentially in a password-protected, data analysis software program in numerical format, to ensure confidentiality. Will the data from my study be used in the future for other studies? It is possible that de-identified data from this study could be used for future research or shared with other researchers for use in studies, without additional informed consent. De-identified means that any codes and personal information that could identify you will be removed before the data is shared. 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: Dr. Lisa Borrero (principal investigator) - (317) 791-5944 borrerol@uindy.edu Dr. Rochelle Bourassa (989) 751-5950 ferre1rm@cmich.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. SIGNATURE: I confirm that I understand the purpose of the research and the study procedures. I understand that the interview will be recorded, and that Dr. Bourassa will access my medical records to obtain information relevant to the study. I understand that I may ask questions at any time and can withdraw my participation without prejudice. I have read this consent form. My signature below indicates my informed consent. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Printed Name of Participant Participant Signature Date Printed Name of Person Obtaining Consent Signature Date 60 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 61 Appendix C: Interview Guide Thank you for your willingness to be interviewed today. As you know, this interview is taking place as part of my doctoral project in the Doctor of Health Science program at the University of Indianapolis. The purpose of my research is to understand what life is like for older adults living in skilled nursing facilities who have a chronic wound. The interview will last approximately 45-60 minutes. Everything you tell me will remain confidential. If you have any questions or concerns throughout the interview, please feel free to ask. You may skip any question(s) you do not feel comfortable answering; you can also stop the interview at any time. Do you have any questions before we begin? Are you comfortable starting the interview now? Now that we are ready to start, I will begin the audio recording. 1. Tell me what you know about your wound. a. How and when did your wound develop? b. What types of treatments have you received for the care of your wound? 2. Tell me about what its like living with your wound. a. Tell me a little about what your emotions have been like during the time that you have had your wound? i. Tell me a little bit about your friendships and other relationships. b. Tell me what its like for you to get around. i. Tell me about your interaction in the facility. Are you participating in activities? ii. Describe your typical day. 3. Tell me about any challenges you have faced resulting from your wound. a. Are you able to be involved in the care of your wound? Why or why not? THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE b. Do you feel your wound is being managed properly? Why or why not? 4. Tell me about what successes you have had with your wound care and healing process. a. What helped make that successful? 5. Is there anything else that you would like to share before we end the interview? I would like to thank you again for your time and participation in this interview. After I review your interview, I will be following up with you to be sure that my interpretation meets what you were saying. Feel free to contact me at any time if you have any questions. 62  ...

... The Meaning of Chronic Wounds in Patients in Long Term Care 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: Rochelle M. Bourassa, DPT, CLT-LANA, CWS Copyright December 9, 2021 By: Rochelle M. Bourassa, DPT, CLT-LANA, CWS All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Laura Santurri, PhD, MPH, CPH Committee Member ______________________________ Caroline Gwaltney, PT, DPT, CWS 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 ______________________________ THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE The Meaning of Chronic Wounds in Patients in Long Term Care Rochelle M. Bourassa Department of Interprofessional Health & Aging Studies, University of Indianapolis 1 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 2 Abstract Background: Chronic wounds result in significant challenges that can affect quality of life (QoL). Though, there is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population using a qualitative approach. Ultimately, by examining residents lived experiences living with a wound in a skilled nursing facility, QoL in patients can be more fully characterized and clinical outcomes maximized. Purpose: The purpose of this study was to understand older adults lived experience with a chronic wound in a long-term care facility. Method: Adults aged 65 or older with chronic wounds were recruited from a long-term care unit and participated in individual semi-structured interviews. The researcher utilized Colaizzis seven-step coding process to analyze the interview data and develop overarching themes. Results: Seven participants completed the study, including five females and two males with chronic wounds. Participant ages ranged from 65 to 92 years old. Wound etiology varied with three pressure injuries, two post-operative, one injury, and one secondary to chronic venous insufficiency. Four major themes and nine sub-themes emerged which help to characterize the participants lived experiences. The four major themes were: lack of independence, confinement/limitations, interruptions, and emotional sequelae. Conclusion: Chronic wounds contribute to feelings of confinement and social isolation for residents in longterm care facilities. Improved mobility and independence may also increase their chances of returning home, subsequently decreasing feelings of confinement, and resulting in fewer interruptions in daily activities. Keywords: chronic wounds, long-term care facility, older adult THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 3 Acknowledgments There are many people who have helped shape this dissertation into what it is today. I will be forever grateful to my committee. I would like to thank my chair, Dr. Lisa Borrero, who supported me, pushed me when I needed it, shared her positive energy, and helped me stay on track. I would also like to thank my analysis expert, Dr. Laura Santurri, who shared her expertise, time, and constant strength that helped push me forward. Finally, I would like to thank my content expert, Dr. Caroline Gwaltney, for sharing her knowledge and expertise, challenging me to think outside the box, and ensuring the use of the oxford comma (lol). I am forever grateful for the support of this committee. I would like to thank my fianc, who assisted me whenever I needed to have the time to work on my schooling, supported me during this process, and always offered words of encouragement when I needed it the most. I am also grateful for my five amazing children, two of which were born during my journey to obtain my DHSc degree. They were my cheerleaders and inspiration as I made my way through my courses and finally completed my research. I hope I have set an example to them that you can always pursue and achieve your goals. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 4 Table of Contents Title Page.1 Abstract2 Acknowledgments3 Table of Contents.4 Chapter 1: Introduction8 Problem Statement...8 Purpose Statement8 Research Question...8 Significance of the Study.....9 Definition of Terms.9 Chapter 2: Literature Review.10 Lower Extremity Wounds..10 Wounds and the Older Adult.12 Categorizing Deficits.12 Qualitative Research Gap..13 The Impact of Research in Long Term Care Facilities.15 Chapter 3: Method.16 Study Design..16 Participants.17 Setting17 Procedures..18 Sampling and Recruitment.18 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 5 Informed Consent..19 Data Collection..20 Data Management & Analysis..20 Rigor/Trustworthiness..22 Chapter 4: Results23 Theme 1: Lack of Independence..24 Lack of Mobility..24 Inability to Return Home.26 Theme 2: Confinement/Limitations.27 Medical Co-morbidities....28 Wound Severity30 COVID-19 Restrictions30 Theme 3: Interruptions.31 Interruptions in Time32 Interruptions in Relationships...32 Interruptions in Daily Routine..32 Theme 4: Emotional Sequelae..33 Chapter 5: Discussion..35 Theme 1: Lack of Independence..37 Theme 2: Confinement/Limitations.38 Theme 3: Interruptions.....40 Theme 4: Emotional Sequelae.41 Limitations...43 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Summary.44 Future Research..45 References..46 Table 1: Participant Characteristics53 Table 2: Theme Table.54 Appendix A: Recruitment Flyer.55 Appendix B: Informed Consent.56 Appendix C: Interview Guide60 6 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 7 The Meaning of Chronic Wounds in Patients in Long Term Care Chronic wounds result in significant challenges for patients, caregivers, and healthcare facilities (Hurd, 2013). The prevalence of chronic wounds is estimated to be at least 6.5 million people in the United States, and associated costs exceed $25 billion annually (Gould and Fulton, 2016; Sen et al., 2009). Chronic wounds result in significant issues that affect quality of life (QoL), including pain, discharge, odor, and limited mobility (Augustin et al., 2017). Patients also may experience sleep disruption, body image changes, increased social isolation, and psychological disorders (Ren et al., 2020). Negative psychosocial and physical health issues can result from chronic wounds, including stress, anxiety, lack of sleep, isolation, and body image perception (Hopman et al., 2014). According to Jaul (2010), there are many factors that can contribute to the development of a chronic wound, including skin changes that occur during the natural aging process, changes in the infrastructure of the skin resulting from chronic disease states, and malnutrition impacting the skin and immune system. Despite these factors, the effects of immobility contribute significantly to the outcome of the wound and increase the risk of wound development due to increased shearing forces, pressure, friction, and increased vulnerability of the skin when someone is immobile (Jaul, 2010). Gould and Fulton (2016) support the findings of risk that Jaul (2010) established, including the effects of aging on the skin and the effects of comorbidities increasing the older adults risk for a wound. A wound's ability to heal is not only affected by the physical environment; a patient's poor psychological status has been found to delay healing (Walburn et al., 2017). How older adults experience and feel about the wound healing process is also important, as the unanticipated clinical course of a chronic wound can result in feelings of frustration and THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 8 emotional upset (Jaul, 2010). The development of a wound in the older adult population is multifactorial and includes both intrinsic and extrinsic factors (Gould & Fulton, 2016). Existing research has established that psychological stress negatively affects wound healing and should also be addressed (Robinson et al., 2017). There is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population. Existing studies in the literature examine this from the perspective of community-dwelling older adults; some focus only on lower extremity wounds. Other studies simply categorize the deficits rather than attempt to understand the patients lived experiences. There appear to be no qualitative studies focusing specifically on the chronic wound experience from the view of those residing in long-term care or skilled nursing facilities. Research is needed in long-term care to fully understand older adults' experiences living with chronic wounds in this setting. Problem Statement Chronic wounds place a considerable burden on the patients who experience them and take a significant financial toll on the United States healthcare system (Olsson et al., 2019). Although previous research has focused on the efficacy of treatment interventions, wound dressings, and the wound's etiological presentation (Tollow, 2018), there is a lack of research addressing the qualitative meaning of living with a chronic wound for older adults, specifically in the long-term care setting. Purpose Statement The purpose of this phenomenological study was to understand older adults lived experience with a chronic wound in a skilled nursing facility. Research Question THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 9 This study addressed the following primary research question and sub-questions: What meaning do individuals in the older adult population living in skilled nursing facilities ascribe to living with a chronic wound? o How do older adults living with a chronic wound in a skilled nursing facility characterize their day-to-day functioning? o How do older adults living with a chronic wound in a skilled nursing facility perceive their quality of life? Significance of the Study This study's primary significance was to give residents the ability to speak to their experiences while living with a chronic wound. Understanding and validating the residents experiences is important in wound healing (Dudfield, 2019). Ultimately, by examining residents' lived experiences in the skilled nursing facility, QoL in residents can be more fully characterized and, in turn, clinical outcomes maximized. Understanding the meaning residents ascribe to living with a chronic wound in a long-term care setting can help tailor interventions, treatments, and clinical approaches to ensure positive resident experiences, compassionate care, and improve outcomes. Definition of Terms Chronic wound: Wounds that fail to heal within 4-8 weeks (van Rijswijk & Polansky, 1994) Older adult: An individual 65 years of age and older (Hurd, 2013) Skilled nursing facility/long term care facility: A group of institutions ranging from those that provide rehabilitation to those providing chronic care to the sick and elderly (Donelli & Vuotto, 2014) THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 10 Quality of life (QoL): A general perception of wellbeing, happiness, and satisfaction by an individual (Woo et al., 2018) Literature Review Chronic wounds are a significant contributor to health care costs and have devastating effects on patients (Olsson et al., 2019). Wound care prevalence is a multibillion-dollar, worldwide issue affecting 6.5 million people in the United States alone (Sen et al., 2009). Two percent of people in the United States are living with a chronic wound (Jung et al., 2016). Lower Extremity Wounds Existing research on the effects of chronic wounds varies between wound type, resident demographics, and study population. However, most studies have only focused on lower extremity wounds (Cunha et al., 2017; Hopman et al., 2014; Roaldsen et al., 2011; Stewart et al., 2018; Tollow, 2018). Lower extremity wounds secondary to chronic venous insufficiency reach their peak prevalence between 60-80 years of age, making them a considerable issue for older adults (Stechmiller et al., 2019). Quality of life in those with chronic lower extremity wounds has also been a focus in the literature. A longitudinal study by Hopman et al. (2016) assessed chronic lower extremity wounds in community-dwelling older adults. They attempted to look at healthrelated QoL factors to aid in wound healing, including pain using the McGill pain scale, autonomy using the EuroQol 5-Dimension Instrument (EQ-5D), and QoL using the 12-Item Short Form Survey (SF-12). They determined chronic lower extremity wounds resulted in negative health-related QoL including impaired sleep, pain, limitations with mobility, and social isolation. Factors related to improved QoL included independence with mobility, decreased difficulty with activities of daily living, and fewer baseline comorbidities (Hopman et al., 2016). THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 11 Similarly, a study by Harlin et al. (2009) assessed QoL in community-dwelling individuals with chronic lower extremity wounds through the use of the health-related quality of life (HRQoL) tool. Patients reported feelings of overall frustration and difficulty with sleep, mobility, and anxiety suggesting that chronic lower extremity wounds result in negative effects on quality of life (Harlin et al., 2009). It is apparent that QoL is negatively impacted in these patient populations, but what does that mean for the QoL and lived experience of those patients living with other etiologies and residing in long-term care facilities? Many older adults have multiple medical comorbidities, medical complexities, and wounds from varying etiologies. Narrowing the research to only focus on lower extremity wounds can cause a deficit in the research regarding chronic wounds. In the skilled nursing population, a variety of wound types lead to severe debility, increased care, and burden to staff and families (White-Chu et al., 2011). For this reason, it is important to assess a variety of wound types in the older adult population in long-term care facilities; however, research on this is limited. Community-dwelling older adults face different challenges to QoL than older adults living in skilled nursing facilities; however, the literature on lower extremity wounds has primarily focused on the community-dwelling older adult population and not those older adults residing in long-term care facilities. In one example, Hopman et al. (2014) examined associations between sociodemographic, clinical factors, and QoL in a group of community-dwelling people with a mean age of 65+/- 17 years. Results of the study found that those patients with chronic leg wounds demonstrated impaired QoL secondary to pain, impaired mobility, poor sleep, depression, limited work capacity, and social isolation. Similarly, the mixed methods approach by Cunha et al. (2017) also only included participants in a community setting, 28.4% of whom THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 12 were still working. Although the authors of these studies looked at the clinical limitations and QoL changes within this population, they failed to address the lived meaning and experiences the patient may have felt. They also narrowed their population of study to individuals in the community-dwelling population, potentially missing additional physical and psychological factors those living within a long-term care facility may experience. Understanding the lived experience of older adults in the skilled nursing environment with various chronic wounds can allow for improved outcomes, increased patient satisfaction, and a more patient-specific, tailored care plan. Wounds and the Older Adult Wounds, including arterial, venous, neuropathic, and pressure ulcers, account for serious morbidity, especially in older adults (Beitz & Goldberg, 2005). Older adults are at an increased risk for chronic wounds secondary to increased exposure to pathological factors that develop due to the aging process (Jaul, 2010). The risk of developing a pressure ulcer increases significantly for those over 70; most pressure ulcers (70%) occur in those over 70 years of age (Jaul, 2010). This increase could be attributed to the increased vulnerability to chronic disease older adults face with age as well as challenges resulting from the normal aging process (Jaul, 2010). As the population ages and the age of mortality increases, so does the resource burden associated with managing wounds (Sprakes & Tyrer, 2010; Hopman et al., 2014). People are living longer with wounds that are slow or do not heal, which increases demand on healthcare resources, including staff and expenses to care for them (Gould and Fulton, 2016; Jaul, 2010). Both the financial burden and the physical impairments associated with chronic wounds make addressing this a priority in our health care system. Categorizing Deficits THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 13 Several authors have categorized physical consequences and resulting psychosocial implications related to chronic wounds in the older adult population. Stechmiller et al. (2019) categorically analyzed their results and found most patients with chronic wounds experience pain, fatigue, leg swelling, and sleep disturbances. In a mixed-method study by Cunha et al. (2017), researchers attempted to look at how participants lives changed after developing a chronic leg wound. They looked at older adults with a mean age of 76 years old and assessed QoL, the patients comprehension of the disease, and the patients related psychosocial feelings resulting from chronic leg ulcers and resulting life changes. The study determined life changes resulting from chronic leg ulcers included sadness, anger, depression, and loneliness in more than 30% of the participants. (Cunha et al., 2017). Although consolidating limitations and challenges into categorical groups may provide an understanding of the patient's physical and psychosocial deficits, it does not allow us to truly understand how the patient is experiencing these challenges. Simply putting their deficits into a category does not help us understand how they are living with this chronic wound, how this lived experience impacts them, and how it can help us adapt our interventions and aid in wound healing. Qualitative Research Gap Qualitative research focusing on wound care is particularly sparse, especially studies examining the older adult population. Specifically, when looking at older adults in skilled nursing facilities, there is a gap in the literature addressing the lived experience of older adults who are dealing with chronic wounds. Qualitative literature focusing on wound care is mainly centered on the physical effects on the patient, with a lack of review of the experience the patient feels and the psychological impact the wound may have on the patient as a whole (Tollow, 2018). Only one qualitative study within the last 15 years focused on individuals in the long-term THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 14 care setting living with chronic wounds. Specifically, Beitz & Goldberg (2005) assessed older adults' lived experience living with a chronic wound in either assisted living communities or long-term care facilities. The researchers assessed 16 participants, both men, and women, with various wound types, including arterial, venous, diabetic, pressure, and unknown etiologies. Beitz & Goldberg (2005) found clusters of themes that can impact the patients QoL, including living with pain, both pain from wound treatments and from the wound itself, as well as the effects of losing mobility and changing agility (Beitz & Goldberg, 2005). Participants also expressed concerns surrounding receiving care, including trusting the caregiver, accepting care, and disliking wound-related care (Beitz & Goldberg, 2005). The authors also revealed findings related to living and aging, specifically, regarding the loss of a spouse, diminishing abilities, and reflecting on their life; whether it was a positive and healthy upbringing, or they were underprivileged growing up (Beitz & Goldberg, 2005). Other themes included experiencing altered sleeping habits from pain and discomfort, changing eating patterns due to diminished appetite, and needing to eat well to promote wound healing. Some participants reflected on the cause of their wound, including reflection on chronic illnesses related to wounds or feeling guilty for sustaining an injury (Beitz & Goldberg, 2005). Other themes included feeling frustrated with the wound healing and treatment for wound healing, having to adjust and tolerate constant treatment interventions, all while attempting to stay positive and hopeful for improvements in the wound (Beitz & Goldberg, 2005). This study provides a basis for further research on a patient's lived experience with a chronic wound in skilled nursing facilities. It exposes the need to distinguish how the patient perceives these deficits and how they view themselves since the wound's development. The role the wound has played in the patients lived experience and what this means to them also needs to be assessed. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 15 The skilled nursing facility setting is an important focus for research as residents in skilled nursing facilities are the most vulnerable to chronic wounds (Spraker & Tyrer, 2010). Although the Beitz and Goldberg study included some participants from the long-term care population, it was not fully specific to this patient population. The Impact of Research in Long Term Care Facilities The lack of research on residents with chronic wounds within the skilled nursing setting is apparent. Skilled nursing facilities are a common destination when patients with chronic wounds are discharged from an acute care hospital. More than three million people enter a skilled nursing facility in the United States directly from an acute care hospital each year (Sorkin et al., 2018). The Centers for Medicare and Medicaid Services (CMS) is the governing body regulating skilled nursing facilities; CMS ensures quality standards, establishes guidelines, and monitors outcomes (Levine et al., 2005). Although research on the lived experience with chronic wounds is lacking in this setting, skilled nursing facilities are closely monitored by CMS. Related to wounds, CMS specifically monitors pressure injuries in long-term care settings, including prevention, risk assessment, and intervention from an interdisciplinary view (Levine et al., 2005). Although acquired pressure ulcers are a focus of CMS, chronic wounds of varying diagnoses are prevalent and result in a burden to the healthcare system in skilled nursing facilities (White-Chu et al., 2011). Research efforts must be focused on this setting as the burden of chronic wounds will continue to rise with the aging population and earlier development of chronic illnesses (Olsson et al., 2018). It is evident that there is a lack of an in-depth understanding of residents perspectives on their experience living with a chronic wound in the long-term care setting. The residents perspectives, lived experiences, and the meaning the wound has on them in all realms are THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 16 important pieces in the overall care for these residents. Two widely utilized wound QoL assessment tools are the Wound QoL and the PU-QoL tool. These tools are designed to identify QoL issues in patients with chronic wounds. They assess some similar categories that Beitz and Goldberg (2005) identified in their research. For example, the Wound QoL tool asks the patient to identify from not at all to very much how they have been impacted in the last seven days in the areas of pain, odor, drainage, sleep, the burden to others, happiness, worry, fear, mobility, activities of daily living, and a financial burden (Augustin et al., 2017). Similarly, the PU-QoL tool attempts to capture the patients health assessment within the past seven days based on how much bother the wound has been for them from not at all to a lot (Gorecki et al., 2013). It assesses items such as pain, drainage, odor, sleep, mobility, activities of daily living, appearance, and social participation (Gorecki et al., 2013). Both tools attempt to quantify the impact a chronic wound has on a persons QoL, but they have limitations. They do not identify settingspecific QoL implications, the meaning these experiences have on the patient, and how to incorporate these experiences into wound management and treatment. Acknowledging and understanding how chronic wounds affect QoL can eventually lead to the discovery of more holistic interventions that improve healing outcomes. Research has demonstrated how a chronic wound can physically affect a patient; however, what does this mean for their self-image, perception of care, and life experience? These questions remain to be answered in the literature. Method Study Design THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 17 This qualitative study incorporated a phenomenological design to examine the meaning of living with chronic wounds for older adults living in a long-term care setting. A phenomenological approach allowed the researcher to identify the essence of the human experience about a phenomenon described by those that have experienced it (Creswell, 2018). Specifically, an existential phenomenology was utilized to determine the nature of the reality that encompassed the lived experience of those with chronic wounds (Phillips-Pula et al., 2011). Participants Participants in this study included older adults with chronic wounds residing in a longterm care facility. Inclusion criteria for this study consisted of individuals who were 65 years of age or older, as this has been identified as an at-risk population in long-term care (Sprakes, 2010). Participants must have had a wound of any etiology for more than 4 weeks, which denotes wound chronicity (Beitz & Goldberg, 2005, van Rijswijk & Polansky, 1994). Participants must have also been their own Healthcare Power of Attorney (HCPOA) and demonstrated the ability to understand the consent and study descriptors, as determined by the Global Deterioration Scale (GDS) with a value of 4 or less. This ensured participants were able to fully consent and participate in the research and interview process. Given the nature of this type of study, a smaller sample size of 3-10 participants was sought and deemed sufficient to provide an in-depth analysis of this specific phenomenon (Creswell & Poth, 2018). Specifically, Malterud et al. (2015) described the use of information power to determine whether a study requires a larger or smaller sample size. Information power can be supported by the study aim, sample specificity, an established theory, and quality of the dialogue (Malterud et al., 2015). In this study, a narrow study aimed with specific research questions offered information power to support a smaller sample size. By utilizing inclusion THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 18 criteria to increase the specificity of the sample population, support of the selected sample size was increased. An established method of study, an existential phenomenological design, provided further support for the selected sample size. Finally, the study-specific interview guide, designed to elicit rich, in-depth responses, guided and supported clear communication between the researcher and the participants (Malterud et al., 2015). Setting The setting for the study was a 153-bed facility comprised of short-term rehabilitation and long-term care units. The facility offers a full spectrum of post-hospital stay healthcare services, including nursing care and rehabilitation services. Participants were selected from this facility based on the inclusion criteria to participate in this research study. Although the researcher is a contract employee in this facility, the researchers primary role is in the short-term rehabilitation unit. The focus of this study took place in the long-term care units to help reduce bias from familiarity with the potential participants. Procedures Sampling and Recruitment A purposeful sampling strategy was utilized to provide the researcher with individual perspectives and experiences relevant to the research question (Jameel et al., 2018). Specifically, a purposeful criterion sampling strategy was utilized to select participants that met the specified inclusion criteria (Palinkas et al., 2015). This was useful in this study because it allowed for information-rich cases that exhibited the phenomenon of interest. Participant recruitment began after approval was received from the Institutional Review Board at the University of Indianapolis. The researcher identified potential participants via the use of an internal wound care list routinely provided by the facility wound care nurse. The THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 19 facility wound care nurse distributed a recruitment flyer (Appendix A) to potential participants to eliminate any potential coercion by the primary researcher. The recruitment flyer directed residents to contact the researcher via phone or via their nurse should they be interested in participating in the study. The recruitment flyer also described the purpose of the study and participation criteria. All residents that were interested in participating contacted the researcher via their nurse and a time was set to meet with them in their room to maintain privacy. Those that expressed interest met with the researcher during the designated time to screen for inclusion criteria; in doing so, the researcher took note of their age, wound chronicity, and GDS score to determine the level of dementia and the residents level of cognitive ability. Residents that met the inclusion criteria received details about the study in written form via the informed consent form (Appendix B). The researcher reviewed this form by describing the studys purpose and expectations for participation, including an audio-recorded interview with a scheduled follow-up session to review and confirm general findings. Participants were also made aware that their participation was entirely voluntary and that their care would not be impacted in any way, whether they decided to participate or not. The risks and benefits of participation were shared as well as methods utilized to maintain confidentiality. They were also told that they could withdraw from the study at any time. They were given the chance to ask questions of the researcher and express any concerns. Those who agreed to participate then had an interview time scheduled to take place at their convenience. Informed Consent At the beginning of the interview, the primary researcher reiterated key points on the informed consent form (see Recruitment) and allowed the participant to ask any questions that THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 20 they had. After that, signed consent was obtained using the informed consent form (Appendix B) was obtained from each participant before beginning the interview. Data Collection Data was collected via in-depth, individual semi-structured interviews. Participants were interviewed face-to-face in the residents room to ensure comfort and privacy and encourage participant openness. A COVID-19 mitigation protocol, as outlined by the facility and Center for Disease Control (CDC), was followed to ensure participant and researcher safety. Interview questions were gleaned from a prepared, semi-structured interview guide focused on understanding participants lived experiences and the meaning of living with chronic wounds (Appendix C). Throughout the interview process, participants had the opportunity to seek clarification and ask questions as needed. Interview questions began in a broad, open-ended manner to gain initial rapport with the participant and allow them to freely describe their experiences. The interview then progressed to an in-depth, intimate style, incorporating probing and follow-up questions to gain a deeper understanding of the meaning the wound had upon the participant physically and psychologically. Interviews ranged from 30 to 60 minutes in length. Upon the conclusion of the interview, participants were informed that the researcher would be contacting them either by phone or in-person meeting, per their choice, to review the interpretations of the study and ensure the researcher's interpretation of the participants experiences were accurate. Data Management & Analysis Audio recordings of participant interviews were transcribed verbatim utilizing the audioto-text service, Temi. Memoing was utilized during this time to allow the researcher to make notes about emerging themes as the data came together and to reflect on any thoughts, feelings, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 21 or assumptions experienced during data collection and analysis. In this way, the process of memoing allowed the researcher to capture and preserve data that may prove significant later (Birks et al., 2008). Once an initial transcription was ready, the researcher reviewed it for accuracy and de-identified it. Completed transcripts were exported from Temi using a numerical code as a file name to ensure participant privacy. They were then uploaded to Dedoose (version 8.3.43), a qualitative data analysis software program, for confidential storage. Audio files were saved in password-protected cloud storage. Based on the seven steps of phenomenological research by Paul Colaizzi as cited in Phillips-Pula et al. (2011) and Finlayson et al. (2018), the first step in conducting phenomenological research is for researchers to immerse themselves in the data to get a sense of the interview before breaking it into components. Accordingly, the researcher read the transcripts multiple times to develop a sense of storyline and a true understanding of the emerging themes and first impressions. Keeping the study's purpose and research question in mind helped link the data to the storyline (Stuckey, 2015). The second step after reading and re-reading participant transcripts is for the researcher to assess the data for words or phrases connected to the research question. The third step in the phenomenological analysis is to formulate meaning to the statements and provide broad categorization (Finlayson et al., 2018, Morrow et al., 2015). To carry out these second and third steps, the researcher and a second, independent coder with extensive experience in qualitative data analysis and dissemination, engaged in independent coding of a section of the first transcript. By utilizing a second coder, the researcher decreased the possibility that assumptions of the primary researcher drove the decision-making process.(Creswell & Poth, 2018). The researcher and the second coder then met to discuss their codes and come to a consensus about the components of a codebook. Both the researcher and the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 22 second coder further used that foundation of a codebook to independently code another section of the transcript. The codebook consisted of participant data, parent and child codes, code definitions, locations of data within each transcript, and representative participant quotations. The finalized codebook was set up into Dedoose for further analysis. The researcher used Dedoose to cluster common experiences for all participants, in keeping with step four of Colaizzis process (Phillips-Pula et al., 2011). By clustering those experiences, themes can be developed to help demonstrate commonalities across cases (Ayres et al., 2003). The researcher then completed steps one through four with the other interview transcripts and engaged in the fifth step by using the previously identified clusters to generate overarching themes (Phillips-Pula et al., 2011). To do this, the researcher formulated an exhaustive description of clusters in the first four steps (Finlayson et al., 2018). The sixth step involves establishing a structure of the phenomenon (Morrow et al., 2015). To this end, the researcher developed a summary of the participants experiences (Phillips-Pula, 2011). analyzed Finally, in step seven, the researcher conducted member checking by reaching out to the residents by their preferred method, either by phone or meeting them in their room at the longterm care facility, to have them review their own interview data for accuracy. Based on participant feedback, there were no changes to incorporate. Rigor/Trustworthiness Henderson and Rheault (2004) describe Gubas model of trustworthiness in qualitative research as having four components: credibility, transferability, dependability, confirmability. Credibility is the ability to establish confidence that the results are true and credible (Henderson & Rheault, 2004)., To ensure credibility, the researcher and a second, independent coder with extensive experience in qualitative data analysis and dissemination, were involved in coding, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 23 analysis, and theme development to ensure trustworthiness (Creswell & Poth, 2018). Credibility was also increased by the utilization of memoing and engagement in member checking. Dependability is to ensure that the findings are repeatable (Henderson & Rheault, 2004). To ensure the dependability of the study, a thorough description of the study methods and data analysis was clearly outlined (Forero et al., 2018). This ensured that the sample was indicative of the population of the study (Henderson & Rheault, 2004). To ensure confirmability, the researcher utilized a second coder which decreased the possibility that assumptions drove the decision-making process. Confirmability is the extent that confidence would be confirmed or corroborated by other researchers and it includes reflexivity. Reflexivity is the process by which the researcher reflects on their biases, values, and background and how this affects their interpretations during their research (Creswell, 2018). Transferability is the degree to which the results can be generalized or transferred to other contexts or settings. To ensure the transferability of the study, a detailed description of the participant characteristics and their context was provided, as well as selecting the participants by utilizing a purposive sampling strategy. Member checking occurred after data analysis to ensure the credibility of the findings and accurate interpretation of the data (Creswell & Poth, 2018). This was done by contacting participants via their preferred method after the data was interpreted. The researchers interpretation of the participants experiences was reviewed to ensure accuracy. The researcher and a second, independent coder were involved in coding, analysis, and theme development to ensure trustworthiness. By utilizing a second coder, the researcher increased trustworthiness by validating the data for accuracy (Creswell & Poth, 2018). Results THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 24 Seven participants completed the current study, all of whom met the inclusion criteria (Table 1). Of those participants, five were females, and two were males. Participant ages ranged from 65 to 92 years old. Scores on the global deterioration score for cognitive function ranged from no cognitive decline (1) to age-associated memory impairment (2). Wound etiology varied with three pressure injuries, two post-operative, one injury, and one secondary to chronic venous insufficiency. The locations of the wounds varied from the sacrum, chest, thighs, and lower extremities. Participants were identified by letter and number to protect their privacy. All interviews were conducted face-to-face and followed the facility COVID-19 protocol. Twelve parent codes were identified in the data, including comorbidities, COVID-19, emotions, constant care, financial burden, interruptions, mental/spiritual health, relationships/support, treatment, mobility/limitations, perceptions of ability, and perceptions of care. Eight of those parent codes were further broken down to contain child codes, for a total of 46. Based upon the analysis of the parent and child codes, four major themes and nine subthemes (Table 2) emerged, which helped to answer the research question. The four major themes were: lack of independence, confinement/limitations, interruptions, and emotional sequelae. Theme 1: Lack of Independence The first primary theme that resulted from the analysis of participant interviews was a lack of independence. Participants perceived a lack of independence resulting from reliance on and necessity to have staff and caregiver assistance. Participants also reported that they could not perform functional tasks at an independent level. Two sub-themes emerged from an overall perception of lack of independence: a lack of mobility and an inability to return home. Lack of Mobility THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 25 A sub-theme that emerged related to lack of independence included a lack of mobility. A lack of mobility arose from restrictions residents faced from their wounds. For example, many residents were unable to reach their wounds to provide their wound care. Some had pain resulting from their wound that restricted their ability to move, and others had underlying weaknesses from being immobile that further limited their mobility. All participants reported needing an assistive device for support and physical assistance from staff. This was resultant from immobility attributed to their wound from factors such as drainage requiring their legs to be constantly elevated, pressure sores needing positional changes, and a lack of mobility due to wound-related edema and pain. For example, participant 4L stated: I dont get around good. Participants reported the need for care to perform daily tasks such as bed mobility, transfers, and activities of daily living. For example, one participant reports she was unable to take a shower without assistance because she not only needed the physical help, but she had to have staff dress the wound before and after she bathed. Participant 1M stated: If I take a shower, I had to make sure that it was covered so I could do what I had to do. Another participant described her thigh wound as impacting her ability to ambulate to the bathroom. Participant 5C stated: I can't get up and walk into the bathroom because my legs rub together. Some participants even reported an inability to ambulate, requiring mechanical lifts to get out of bed and transfer to and from a chair. This was not only from wound-related pain but also from edema and weakness. Participant 4L stated: I don't like being dependent on other people, but you accept it Its awful, I can't do it myselfthat lack of independence. An inability to function independently on a day-to-day basis was a theme throughout for all participants. Inability to Return Home THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 26 Participants also described their lack of independence as an inability to return to their homes. Many lacked the support from others to care for their wounds. For example, participant 6C stated, yeah, she tried, when describing his wife attempting to care for his pressure injury at home. Participant 2H described difficulty with the recommended wound care products, we didn't have the proper dressings available, so we were using incontinence pads. Participant 3P described his sons unsuccessful attempt to heal his wound, I have three boys, and they were taking turns and, and they kept those bandages on every day, every night. All participants had physically limiting conditions that impacted their ability to stay within their homes for care. They also reported difficulty in mobility resulting from the conditions that were limiting them physically, which made it difficult to remain within their home, resulting in admission into the long-term care facility. It was difficult to tease apart whether their wound itself or a combination of this and their physical conditions secondary to their co-morbidities were the primary factors. Comorbidities that reduce physical mobility predispose people to wounds while wound-related complications can reduce mobility, making these issues highly interrelated. The mobility deficits reported included an inability to ascend and descend stairs to safely enter and exit their homes. As participant 5C stated regarding her wound on her thigh limiting her ability to take steps as well as her obesity and weakness limiting her functionally, I couldnt get down the front steps. So, youre trapped in your own home. Similarly, participant 2H reported that it was hard to get out of the house and do stuff; it was draining so heavily. One participant described an inability to get into and out of a car for transportation due to pain in her lower leg wound and lower extremity weakness. Participant 1M reported: THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 27 I was afraid of sliding [out of the car], and then everybody's paranoid about taking me and it's just like, it's not worth it. You stay home. But it's not, you know, is that really where I'd like to be? Id like to be out sometime, even if it was just for a ride. One participant had a strong desire to be independent and attempted to return to her home. Her perception was that she would be able to care for herself and move around independently. She was unsuccessful, resulting in a need to call emergency medical services as she could not independently get out of her chair. Ultimately, she had to return to the facility. She did not solely relate her need to return to the facility due to the wound but a combination of physical limitations, limited mobility, and an inability to care for herself. Participant 1M reported: And in my mind, I said, oh, I just go home. I can get my lift chair. It didn't work I was just sitting in an awkward position. I could not stand; my brain wasn't letting me do that. So, they called emergency medical services and they came in. Theme 2: Confinement/Limitations The second theme that arose from the analysis of participant interviews relates to the participants reported feelings of confinement and the experience of limitations in day-to-day functioning related to their wound. This theme also included three sub-themes; medical comorbidities, wound severity, and COVID-19. Participants recognized the effects of the wound on all aspects of their daily care. For example, covering the wound to be able to bathe, keeping their legs elevated to decrease drainage, wearing clothing that is conducive to bulky dressings, or staying confined to their room due to the perception of the risk of further infection were some examples of the effects of the wound on daily care. Participant 1M reported: It was confining, you know, and if I take a shower, I had to make sure that it was covered so I could do what I had THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 28 to do. Similarly, participant 2H reported: As long as it was draining, they had thought it would be better if I dont go outand this kept me kind of confined to my room. Another participant described being confined to his room due to his wound. Participant 3P stated: Im bedridden, and Ive got a jar [negative pressure wound therapy canister] on one side and a jar [negative pressure wound therapy canister] on the other, and I cant go anywhere. Medical Co-morbidities Many reported that the wound itself was not the only contributing factor that resulted in limitations in day-to-day functioning and feelings of confinement. A combination of participant co-morbidities paired with the wound resulted in limitations in their mobility, function, and ability to participate in their daily self-care. All participants had medical comorbidities, as seen in the full list provided in Table 1. These co-morbidities included, but were not limited to, obesity, lymphedema, sepsis, neuropathy, atrial fibrillation, hypertension, congestive heart failure, and peripheral vascular disease. Among these, obesity, lymphedema, sepsis, neuropathy, and diabetes mellitus were perceived by the participants to be the most influential in their ongoing limitations related to the wound, as they were seen to delay healing and limit day-to-day functioning. For example, participant 4L stated: I havent been showering in the shower because I was so afraid, I've had two falls. This was further clarified with the participant during member checking; the participant referenced her obesity and neuropathy resulting in a history of falls. This limited her mobility due to a fear of falling and fear of re-injuring her wound. When discussing limitations to wound healing, participant 3P reported: And my blood sugar wasn't good. You know, I probably should have been on insulin earlier, maybe. This was further clarified during member checking as to if his limitations in healing were attributed to his lack of managing his diabetes, and he confirmed this. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 29 Obesity was related to feelings of limitation by many participants, both the obesity resulting in wounds as well as obesity limiting the participant physically. For example, participant 5C stated: I would say probably my obesity is the big one because I retain water, and if I had taken care of myself, you know, when I wasn't retaining water, I would've never gotten those little blisters, which burst all the time. Participant 1M reported that she is limited because of her size and because of my size, you know, they don't want me falling on no floor. She also reported feeling limited from her obesity. When asked if the wound was the limiting factor in leaving her room, she stated: It's also my other issues that I have that inhibit me to do certain things. Another participant, 2H, described an interaction before coming into the facility. She reported one doctor saw her for her wounds, but she felt that he did not further treat her due to her size. She felt that her lack of outpatient care limited her ability to stay in her home as further care was needed. She was admitted to the hospital for wound-related sepsis and then admitted to the skilled nursing facility for wound care. I got extremely frustrated with him, and that was the last time I visited there because he said, I can't do anything more for you, you have to lose weight. That's the only way it's going to get healed, and they discharged me. I still had a humongous wound on my leg. Wound Severity Participants identified wound severity to be a factor in feelings of confinement/limitations. The severity of the wound with complaints of pain, for example, was a factor for many participants. Participant 5C stated: that [the wound] was very, very painful. Similarly, participant 2H reported: I felt like dying. I was going through so much pain all the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 30 time. Limitations resulting from pain in the wound and during treatments were further clarified during member checking. Participants clarified that the pain resulted in a reluctance to leave their room due to the discomfort. These feelings of confinement can affect the participants' day-to-day functioning and perceptions of their quality of life. For example, participant 1M reported: I just dont go out into the hall. Another participant (5C) described her quality of life (QoL) by stating: You know, you sit around and think, why me and how am I going to get out of this? And why didn't I die? Should I die? Participants also reported that excessive drainage, the need for multiple bandages resulting in a bulky appearance, and feeling self-conscious also resulted in feelings of isolation and confinement. Participant 4L reported about leaving her room with her wound: I was very apprehensive. COVID-19 Restrictions In addition to the impact the wound had on participants, many also shared concerns related to COVID-19 that further confounded the feeling of confinement produced by having a wound. Some participants also reported a lack of wanting to interact with other residents. Participant 1M stated: My stuff is one thing, but, and I'm afraid if I go to that dining room, that's going to be an issue for me. And so, Id just as soon stay here, especially at this stage of the game. This statement was further clarified with the participant during member checking to gain a complete understanding of why she chose not to exit their room for meals. The participant further explained that it not only took a lot of assistance from staff to get her up and out of bed, but then there was an added risk for developing COVID-19 if they were interacting with other residents. The impact COVID-19 had on participants' mobility outside of their rooms was hard to tease apart from wound-related mobility restrictions. Both the wound and COVID-19 played a part in participants exiting their rooms and interacting within the facility. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 31 Participants also reported feelings of confinement and limitations due to the COVID-19 pandemic and facility restrictions. This included the restrictions the facility had placed on visitors; visitors were not allowed into the building at the beginning of this study during the peak of the pandemic. In addition, limitations on outings were put in place due to the risk of COVID19 in the community resulting in the facility only allowing medically necessary appointments. The facility itself also posed a risk to the residents, as the facility had residents and staff that tested positive for COVID-19. As a result, mitigation strategies were put in place. For example, if a resident needed to leave the facility for an appointment, they were required to wear appropriate personal protective equipment (PPE) and had to be placed in isolation upon returning for 10 days. During the duration of the study, the facility continued to limit visitors coming into the building. Participants reported feeling socially isolated and restricted to their rooms for most of the day. It was difficult to differentiate if the primary limiting factor was the COVID-19 restrictions or a combination of this and the wound, as participants referred to both contributing to a feeling of social isolation. Some stated the wound itself limited their participation in activities and events outside of their room due to drainage, fear of infection, potential odor, and negative perceptions others may have of them. For example, participant 5C stated regarding the appearance of her wound, When I see that, I cant even think about the scarring thats going to be on my leg. Participant 1M stated: I dont know if it will ever be right. Participant 2H also stated: It was draining so heavily. Participants also noted that the increased risk of COVID-19 infection was limiting them from wanting to leave their rooms. For example, participant 6C said: You don't want to go out and about; you haven't had the urge to, because you got to wear that mask and worry about all that COVID stuff. Thus, although it may not be the only factor, THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 32 COVID-19 played a role in contributing to participants' feelings of confinement and social isolation, negatively affecting QoL. Participants reported a fear of the COVID-19 virus as well as further infection to their existing wounds. For example, participant 1M stated: I mean, it [wound] was wide open. Theme 3: Interruptions The third theme depicts participant perceptions that chronic wounds caused interruptions in their normal routines. These interruptions to normal routines were further categorized into sub-themes. These sub-themes included: interruptions in time, interruptions in relationships with family, and interruptions in daily routines. Interruption in Time All participants felt a sense of interruption in time, whether from time taken out of their day for the care of their wound or a sense of time lost dealing with the entire healing process itself. Participant 1M stated: It [the wound] does require a bit of attention. Similarly, participant 2H stated: It is intense, constant care. Interruptions in time were also felt by participants related to their relationships with their families. For example, participant 2H reported: I was missing out on stuff, doing activities with other people being stuck in my room so often. This interruption may be attributed to a combination of the time it took to care for the wound and the COVID-19 facility restrictions. Given that participants attributed an interruption in time to both, it was difficult to differentiate the most influential factor. Interruption in Relationships Participants also reported not wanting to interrupt their family members to care for them. Many participants acknowledged that caring for their wounds takes a significant amount of time. They described that their families have other responsibilities, and they did not want to interrupt THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 33 those responsibilities. For example, participant 4L stated: I mean, it's been a long time, I haven't seen that much of her cause she doesn't have the time. This was further clarified during member checking to assess these concerns. Predominately, participants felt that their family members have other responsibilities, and they did not want to interrupt their other responsibilities to have them care for them. Another participant stated: You get lazy after a while; you just don't want to interrupt your day, you know? Interruption in Daily Routine There was a mixed report about how the wound interrupted the participants' daily routine. The majority of participants felt that the time it took to care for their wound interrupted their daily routine, placing an interruption in their normal day-to-day activities. For example, participant 1M stated: for a while, they were wrapping it, to keep the bandage on, and then the wrapping would fall off, and the bandage would be open, and it's like, oh geez. Similarly, participant 2H reported: It just interrupts my daily life, to where the dressing just gets changed and then it has to be changed again. However, one participant felt that caring for their wound was just part of their normal routine at this point. Participant 5C stated: Yeah, it's just part of the routine. Theme 4: Emotional Sequelae The fourth theme that emerged from the data relates to the participant's perceptions of the emotional consequences of living with a chronic wound. Many participants reported feelings of loneliness and depression. For example, participant 6C stated: I feel, kind of low, I cant do much. Similarly, participant 5C said: I mean, I could just feel the depression pulling me right down. Participants reported feeling down or depressed due to not being able to live at home. Participants also reported limitations their family members have, such as transportation issues THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 34 and family obligations limiting their ability to come in and see them, even for a window visit. One participant reported that her spouse was unable to visit due to his medical issues. Another participant said his wife still worked, which limited her ability to make time to visit. These factors played a role as to why a family member was not able to come to visit. Therefore, it could not solely be attributed to their wound or facility restrictions, as personal family matters also contributed to this. In addition, many participants reported anxiety and worry related to their wound prognosis and interventions they may or may not have experienced. For example, one participant reported anxiety when she was faced with the decision about having surgery and opted not to have the procedure done due to fear. Participant 1M reported: They told me one time that they would probably have to do plastic surgery on that leg, and I said, I don't think so, not these legs. Another participant reported worry about his negative pressure wound therapy device. He worried about who would change it and when it would be changed. He also reported that, due to issues at the hospital when the negative pressure wound therapy was placed, he was more aware of the need for someone trained to manage it. Participant 3P stated regarding his wound vac care: It only takes one little spot where the tape doesnt seal and then the air leaks in there, and there are only certain people that know how to do that. There were also reports of frustration with the length of time it has taken to heal their wounds, as well as not being able to care for the wound themselves at home and requiring admission to the facility. For example, participant 2H reported: it was frustrating because everything would stop, it stopped getting smaller, and the drainage would continue. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 35 Despite the fear, worry, and anxiety many have faced, all participants reported improvements in their wounds, positivity about being in the facility, and the care they have received. Participant 5C reported: It [the wound] is healing, but I cared for it for seven months and nothing was done. Now that I've been in here, theyre very active at cleaning and dressing it and it's coming along wellI'm having a difficult time, but Ive had tremendous help here. I really can't say enough about this place, it has been very, very good to me and I can get out of bed now. While discussing the care they have received, participants had very positive reports. For example, participant 1M reported about her wound care: they took very good care of it. Similarly, participant 3P stated: they know their stuff. All participants reported that the healing of their wounds could be attributed to the positive, knowledgeable, and constant care they are receiving at the facility. Participants also expressed a perception of relationship development while being in the facility. Receiving regular and daily care from the facility caregivers, staff, and therapists contributed to the development of new relationships. For example, participant 5C stated: It gives you somebody else to talk to, and somebody else to see. Participant 1M said: And there again, I've made very nice friends through all this, you know, through that stuff I can think, well, you know, this is kind of nice. I keep in touch with the nurses that I had at homecare. Participant 2H stated: It increased my relationships actually because it brought more people into my life, the caregivers and the nurses that came into my life. Discussion There is limited research to describe the lived experience and meaning ascribed to living with a chronic wound in the older adult population. Research focused on those living within THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 36 skilled nursing facilities with chronic wounds is particularly sparse. As such, the purpose of this existential-phenomenological study was to examine participants' lived experiences and increase the understanding of the meaning residents ascribe to living with a chronic wound in a long-term care setting. This study highlighted the need for research in long-term care to fully understand older adults' experiences living with chronic wounds in this setting. Approval was received from the Institutional Review Board at the University of Indianapolis for this study prior to beginning recruitment activities. The study took place in a 153-bed, rehabilitation center, consisting of a short-term unit and a long-term care unit. Participants in this study included older adults with chronic wounds currently residing in the long-term care unit. Inclusion criteria for this study consisted of individuals who were 65 years of age or older. Participants had a wound of any etiology for more than 4 weeks. All participants were their own Healthcare Power of Attorney (HCPOA) and demonstrated the ability to understand the consent and study descriptors, as determined by the Global Deterioration Scale (GDS) with a value of 4 or less. A factor that played a unique role in carrying out this research study was the global COVID-19 pandemic. The primary researcher received the COVID-19 vaccination, was tested weekly for COVID-19 at the request of the facility and maintained compliance with the facility and the Centers for Disease Control and Prevention COVID-19 guidelines. The effects of COVID-19 not only affected how the researcher accessed participants, but the participants also faced restrictions that fluctuated during the study due to changes within government regulations. For example, visitation restrictions were put into place, residents were not able to leave the facility for leisure, and residents were not able to venture into the halls for socialization. In the THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 37 end, the meaning of living with a chronic wound in a long-term care facility was informed by the experience of simultaneously living through the COVID-19 global pandemic. In this study, four major themes and nine sub-themes emerged which reflected the meaning that residents living in a skilled nursing facility ascribed to living with chronic wounds (see Table 2). Overall, there was a lack of independence, feelings of confinement/limitation, interruptions to daily life, and emotional perceptions experienced by participants. Understanding these themes and how residents in skilled nursing facilities evaluate their quality of life (QoL) enables healthcare providers to improve clinical outcomes, including resident satisfaction. Theme 1: Lack of Independence Every participant living with a chronic wound in the current study reported a lack of independence, affecting their QoL. Both residents with and without wounds in long-term care facilities may face limitations in mobility and an inability to return home for various reasons. In keeping with this, individuals in this study, all of whom had chronic wounds and resided in a long-term care facility, reported a decrease in their level of independence. A study by Hopman et al. (2016), noted that independence with mobility was related to QoL in those living with chronic wounds in the community. Specifically, the authors explained that factors related to improved QoL included independence with mobility, decreased difficulty with activities of daily living, and fewer baseline comorbidities. Although the study by Hopman, et al. (2016) took place with community-dwelling older adults, the results are consistent with the findings of the current study, which focused on residents residing in long-term care facilities. The findings of this study support research on resident perceptions of independence, particularly that a lack of independence results in a negative perception of QoL (Hopman et al., 2016, Harlin et al., 2009). That is, participants reported a lack of independence, a lack of mobility, and an inability to return THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 38 home resulting in the need for constant care to care for the wound and also perform daily tasks such as bed mobility, transfers, and activities of daily living. Participants in this study reported requiring assistance for mobility tasks. A study by Jaul (2010) demonstrated that the effects of immobility contributed significantly to wound outcomes and wound development due to increased shearing forces, pressure, friction, and increased vulnerability of the skin when someone is immobile. The risks of further breakdown and/or an inability of the wound to fully heal increases when a patient is immobile (Hopman et al., 2016, Jaul, 2010, Harlin et al., 2009, Beitz & Goldberg, 2005). A benefit to those residents in a longterm care facility is the access to the required assistance for mobility to help counteract the negative effects of immobility. Participants with a chronic wound in a long-term care facility have access to a level of care and assistance that community-dwelling people with wounds do not, and in this study, participants recognized the benefit of the assistance they received regarding wound healing. Those who need greater mobility assistance to promote wound healing may not receive the necessary care they need at home, leading to poorer healing outcomes. This highlights the value of a long-term care setting for those with chronic wounds and mobility restrictions. By increasing participant mobility, clinical outcomes can be improved by facilitating wound healing, fostering independence, and increasing resident perceptions of their level of independence in their day-to-day functioning. Although participants had negative feelings about a lack of independence, all participants recognized that the assistance they received with mobility and caring for their wounds led to positive outcomes regarding wound healing. All participants described positive perceptions of their wound healing. There are factors related to residing in a long-term care facility that can positively affect wound healing including 24-hour care, assistance for mobility restrictions, and THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 39 expert wound care. These reflect unique, positive implications of residing in a long-term care facility not experienced by those in the community facing similar wounds. Theme 2: Confinement/Limitations In the current study, feelings of confinement/limitations resulted in a negative perception of ones QoL. Participants feelings of confinement/limitations resulted from a combination of medical co-morbidities, wound severity, and COVID-19 factors. Existing research has demonstrated that chronic wound-related factors, including pain, discharge, odor, and limited mobility, significantly affect QoL (Augustin et al., 2017). In this current study, participants described that chronic wounds resulted in feelings of confinement affecting QoL secondary to limited participation in activities and events outside of their room. Similar to the findings of Augustin et al. (2017), this was due to drainage, fear of infection, potential odor, and the fear of negative perceptions others may have of them. The findings of this study determined individuals residing in a long-term care facility experience reduced QoL due to confinement-related issues, at least in part, due to wound-related factors. Clinicians can foster improved QoL by focusing on factors that can be adjusted to improve residents feelings of confinement/limitations. A variety of advanced wound dressings are available to mitigate the factors discussed previously that negatively affect quality of life. For example, dressings containing activated charcoal can neutralize wound odor, allowing residents the opportunity to socialize without embarrassment. Antibacterial dressings can further assist with reducing wound odor and the risk of infection. Advanced super absorbent dressings can manage a significant amount of drainage, prolonging wear time while preventing leakage from heavily draining wounds. All these options can reduce a residents feeling of confinement due to THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 40 wound-related issues. Finally, silicone-based adhesives and the use of topical or oral medications can be used to reduce procedural-related wound pain, improving overall QoL. As clinicians, there is an awareness of the numerous effects of the COVID-19 global pandemic on the healthcare environment. It must be recognized that the pandemic-related restrictions that were placed on residents in long-term care facilities also contributed to feelings of isolation and confinement in these residents. In the current study, it was impossible to identify which feelings of isolation and confinement were related to the wound, the pandemic-related restrictions, or a combination of both. More research is needed to better elucidate the impact of chronic wounds on this feeling of confinement. Further research should take place within longterm care facilities outside of a global pandemic. Theme 3: Interruptions Participants in this study described interruptions to their day-to-day lives as having to do with interruptions in time, interruptions in relationships, and interruptions in daily routine. Residents in long-term care facilities may face interruptions in their day due to therapy visits, medication passes, and other care activities. Participants in this study described further interruptions in their day-to-day lives related to wound and dressing changes. These interruptions are unique to residents in long-term care facilities with chronic wounds and are likely in addition to other interruptions. This theme has not been previously identified within the literature, perhaps due to limited research performed in this setting, and appears to be exclusive to those residents residing in long-term care facilities. Perhaps interruptions experienced by these residents are due to the amount of care they require, which is why they are in the long-term care facility in the first place. It could also be in part due to those in the community having more control over their schedule. For example, they can decide when to change their own dressing or have input into THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 41 when home health caregivers come to see them. Perhaps those in long-term care facilities feel a lack of control over their schedule in general. Clinicians need to be cognizant and understanding of the time it takes out of the residents day, how it affects their already limited time with family and friends, and acknowledge the perceptions the resident may have on their lack of control in their day. Skilled nursing facilities can assist with decreasing the perception of interruptions to residents daily life and relationships by setting established routines for wound care treatments. In some facilities, including the current study facility, the timing of residents wound care can fluctuate on a day-to-day basis, depending upon the schedule of the wound care nurse. Involving the resident in scheduling wound care treatment appointments could be an effective strategy to mitigate the feeling of unexpected interruptions to the residents lives. When this is not possible, providing as much advanced notice of planned care is advised. The facility can also increase visitor support and be encouraging of family support. However, considering the restrictions COVID-19 placed upon the facility, other means of communication between the resident and their family such as virtual visits may be another viable option to consider. Theme 4: Emotional Sequelae In the current study, many participants reported feelings of loneliness, depression, or feeling down due to living with a chronic wound. This is similar to the results of a study by Cunha et al. (2017) in which it was determined that life changes resulting from chronic leg ulcers included sadness, anger, depression, and loneliness in more than 30% of their communitydwelling participants. Even though residents in this study lived in a long-term care facility, the participants had similar perceptions as those living within the community. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 42 Further, many participants reported anxiety and worry related to their wounds. This is also supported in the literature, as existing research has established that psychological stress negatively affects wound healing and, thus, should be addressed (Robinson et al., 2017). A study by Hopman et al. (2014), determined that QoL in participants in community-dwelling settings was affected by feelings of frustration, mobility, and anxiety. Although the current study was conducted with adults in a long-term care facility, the findings support that wounds result in perceived negative effects on QoL. A wounds ability to heal is not only affected by the physical environment but also a patients poor psychological status (Walburn et al., 2017). These stressors were evident when looking at participants' perceptions of QoL. This studys results revealed that residents perceptions of their QoL, including the domains of mobility, independence, and feelings of confinement, were negatively affected by their chronic wounds. As such, a combination of residents feelings of depression and feelings of social isolation could negatively impact their wound healing. This studys results are also supported in a study by Hopman et al. (2016) in which it was determined that chronic lower extremity wounds resulted in negative health-related QoL due to pain, social isolation, and mobility limitations. Although the Hopman et al. (2016) study occurred in the community-dwelling adult population, comparisons can be made to this study as the results are similar despite the difference in the participant population setting. The COVID-19 global pandemic also needs to be considered as it could have magnified the issue of social isolation with the participants in this study. The emotions identified in the current study align with themes developed by Beitz & Goldberg (2005). The researchers in the Beitz & Goldberg (2005) study identified chronic wound factors that impact a patients QoL in community and long-term care settings, including THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 43 the effects of losing mobility, changing agility, and living with pain from both wound treatments and the wound itself. Similarly, this study found negative factors in QoL due to immobility and wound-related pain. In contrast to the Beitz & Goldberg (2005) study, participants in this study reported positive perceptions of their wound healing and a sense of support from the staff at the facility. Participants felt their caregivers were knowledgeable, and new, positive relationships developed between facility staff and participants. Beitz & Goldberg (2005) found that participants had concerns surrounding receiving care, including trusting the caregiver and accepting care. This was not a finding in the current study. In contrast, positive perceptions were expressed by participants in the current study. This may be attributed to the fact that residents in long-term care facilities recognize their needs and the impact that their wounds have on their care needs. Also, another significant factor could be the amount of time that residents have to develop relationships with their caregivers, as residents in long-term care facilities have caregivers available 24 hours per day. Further, those within the community may have family members completing their care, whereas, in a long-term care facility, care is performed by a skilled provider. This may explain the differences in trust developed between participants in this study and their providers compared to the participants in the Beitz & Goldberg (2005) study. Because this study is limited to one facility, further research is indicated in a variety of skilled nursing facilities to examine perceptions of care and the lived experience of older adults living with a chronic wound. A residents emotional state should be routinely assessed due to the emotional factors related to having a chronic wound. This is also supported in the literature, as existing research has established that psychological stress negatively affects wound healing and should be THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 44 addressed (Robinson et al., 2017). It is recommended that clinicians utilize tools such as woundrelated QoL measures to determine a residents emotional health and to determine if a further referral is indicated to the proper support systems, such as a social worker or psychologist. Limitations A potential limitation of this study is the risk of researcher bias and perception of coercion during recruitment, as the researcher was employed at the facility in which the study took place. Attempts to decrease this risk were made. As the researcher worked occasionally in the short-term rehabilitation unit of this facility, the focus of this study took place in the longterm care units to help reduce bias from familiarity with the potential participants. The distribution of the recruitment flyer to residents by the wound care nurse instead of the researcher was also utilized to decrease coercion. Also, to decrease potential bias, the researcher utilized a second, independent coder with extensive experience in qualitative data analysis and dissemination. In doing so, the researcher helped minimize the role that the researchers assumptions may have played in her interpretation of the results (Creswell & Poth, 2018). Finally, the use of memoing ensured that the researcher was able to capture and keep track of personal thoughts and assumptions and, thus, limit researcher bias throughout data analysis (Henderson & Rheault, 2004). Another potential limitation within this study was the effects of the COVID-19 global pandemic. As results were compared to prior literature, the COVID-19 global pandemic was a new factor within this study that had not previously been a factor in the existing literature. Attempts were made to focus on wound-related factors, but the influence of the pandemic-related restrictions impacted the participants lived experiences and perceptions. Future Research THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 45 There is a lack of qualitative research assessing patients lived experiences with chronic wounds, specifically in the long-term care setting. The findings of this study contribute to this limited area of research. However, the findings of this study were limited to one facility located in a rural area. Given this, there is a need for further qualitative research with a more diverse sample to gain a broader perspective on the impact of living with a chronic wound. For example, including participants with diversity in characteristics such as short-term versus long-term facility status would allow for a combination of residents staying short-term and long-term and may lead to a difference in perspective. Variations within facility locations would also enhance the diversity of the sample, for example, residents within rural versus metropolitan settings. Based on the study results, the researchers provided specific suggestions for how clinicians in skilled nursing facilities can improve residents wound healing and overall QoL. These suggestions included monitoring resident QoL and emotional state and eliciting more mobility within these individuals. It was further recommended that long-term care facilities decrease interruptions to residents daily life and relationships by setting established routines for wound care treatments. Further research is needed to determine how these changes may impact residents perceptions, wound healing, and overall QoL. The COVID-19 pandemic placed additional stressors, changes in routines, and limitations upon residents in long-term care facilities. The effects of COVID-19 could not be exclusively separated from some of the findings in this study. Given this, additional research, not in the context of a global pandemic, is needed to assess the specific impacts of chronic wounds. Summary Chronic wounds result in a lack of independence, feelings of confinement/limitations, interruptions in day-to-day activities, and emotional sequelae with residents in long-term care THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 46 facilities. While all these factors affect residents in long-term care facilities, they can also affect those in the community living with chronic wounds. Thus, the importance of addressing these factors can provide a benefit to all patients with wounds. Further, chronic wounds lead to feelings of confinement and social isolation for residents in long-term care facilities. This was also amplified by the COVID-19 pandemic. Although changes can be elicited to the wound-related confinement and social isolation barriers, the effects of the COVID-19 pandemic on resident emotional perceptions and social isolation, with or without wound involvement, should be further studied. A lack of mobility can be both a result of having a wound and/or a precipitating factor in wound development. Non-wound-related comorbidities may also play a role in decreased mobility, complicating the ability to attribute this theme solely to the wound. Regardless, care in skilled nursing facilities should focus on increasing resident mobility to mitigate the negative effects seen with immobility with all residents, as improved mobility can improve wound healing. Improved independence and mobility may also increase their chances of returning home, subsequently decreasing feelings of confinement and resulting in fewer interruptions in day-to-day activity. Perhaps the most meaningful difference between residents residing in long-term care facilities and those community-dwelling older adults was the perception of positive care felt by those in the long-term care facility. All participants reported positive, knowledgeable, and constant care received while in the long-term care facility. 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Wounds International, 9(3), 614. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 54 Participant Characteristics Table 1 Participant Characteristics Gender Female 73 Age Wound Etiology Injury Female 65 Chronic Venous Insufficiency 1 Male 92 Post-Op Surgical 1 Female 87 Pressure Injury 1 Female 70 Post-Op Surgical and Chronic Venous Insufficiency 1 Male 72 Pressure Injury 2 Female 88 Pressure Injury 2 1 GDS Score Co-Morbidities Lymphedema Obesity Atrial Fibrillation Depression Anxiety Hypertension Congestive Heart Failure Chronic Venous Insufficiency Lymphedema Obesity Atrial Fibrillation Chronic Obstructive Pulmonary Disease Diabetes Mellitus Anxiety Hypertension Bipolar Disorder Hypertension Infection Diabetes Mellitus Atrial Flutter Peripheral Vascular Disease Coronary Artery Disease Congestive Heart Failure Atrial Fibrillation Hypertension Edema Fluid Overload Diabetes Mellitus Sepsis Obesity Atrial Fibrillation Hypertension Chronic Kidney Disease Congestive Heart Failure Edema Sepsis Cerebral Vascular Accident with hemiparesis Chronic Kidney Disease Peripheral Vascular Disease Coronary Artery Disease Atrial Fibrillation Diabetes Mellitus Myocardial Infarction Degenerative Disc Disease Malnutrition THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Table 2 Theme Table Theme Lack of Independence Confinement/Limitations Interruptions Emotional Sequelae Definition Participants reporting difficulty, inability or limited independence in day-to-day tasks Participants reporting feelings of confinement, limitations with activities, or feelings of isolation Participants reporting feelings of disruption or interruption in their day-to-day lives Participants reporting emotions related to their wound, wound treatment, and/or day-to-day lives Sub-Themes Lack of mobility Inability to return home Medical comorbidities Wound severity COVID-19 Interruption in time Interruption in relationships Interruption in daily routine 55 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Appendix A: Recruitment Flyer 56 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 57 Appendix B: Informed Consent KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS The University of Indianapolis is requesting your participation in a research study to understand and validate the patients lived experience while living with a chronic wound in a long-term care facility. Your consent to participate in this study is voluntary and consent can be withdrawn at any point in the research process. Your care will not be impacted in any way should you chose to participate or not. The study consists of a recorded in-person interview, maintaining COVID-19 mitigation protocol. Interviews will take approximately 45-60 minutes and your identity will remain completely confidential. A brief follow-up meeting of approximately 30 minutes will clarify and discuss the researchers interpretations of the themes drawn from the initial interview. Participants will not directly benefit from participation and no risks or discomforts have been identified for potential participants. CONSENT TO PARTICIPATE IN RESEARCH STUDY The Meaning of Chronic Wounds in Patients in Long Term Care Study Principal Investigator (PI): Dr. Lisa Borrero UIndy Email: borrerol@uindy.edu UIndy Telephone: (317) 791-5944 Lisa Borrero, Ph.D., and Rochelle Bourassa, DPT, CLT-LANA, CWS at the University of Indianapolis (UIndy) are conducting a research study. You were selected as a possible participant in this study because you are an older adult with a chronic wound currently residing in a long-term care facility. Your participation in this research study is voluntary. Why is this study being done? The purpose of this qualitative research study is to understand older adults lived experience with a chronic wound in a skilled nursing facility. This study's primary significance is to give patients the ability to speak to their experiences while living with a chronic wound. Understanding and validating the patients experiences is important in wound healing. Ultimately, by examining patients' lived experiences in the skilled nursing facility, quality of life in patients can be more fully understood and, in turn, maximize clinical outcomes. Understanding the meaning of living with a chronic wound in a long-term care setting for patients can help tailor interventions, treatments, and clinical approaches to ensure positive patient experiences, compassionate care, and improve outcomes. What will happen if I take part in this research study? THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 58 If you volunteer to participate in this study, the researcher will ask you to do the following: Participate in a 45-60 minute interview with the researcher, which will be audio recorded. o 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 meeting to clarify and discuss the researchers interpretations of the themes drawn from the initial interview. Consent for the researcher, Dr. Bourassa to access your medical record solely for purposes related to the research study to determine wound details, chronicity, history, and etiology. How long will I be in the research study? Participation will take a total of about 45-60 minutes for the initial interview. Additional time for follow-up discussion at a later date will take approximately 30 minutes to confirm and clarify the researchers interpretation of the information shared during the initial interviews. 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? Although there is no direct benefit to participating, you may feel a sense of value related to your ability to share your thoughts and perceptions related to living with a chronic wound in a long-term care setting. The results of the research may provide a better understanding about the meaning of living with a chronic wound in a long-term care setting, which in turn, could help tailor interventions, treatments, and clinical approaches to ensure positive patient experiences, compassionate care, and improve outcomes in the future. 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. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 59 The written interview transcript will be de-identified and stored confidentially in a password-protected, data analysis software program in numerical format, to ensure confidentiality. Will the data from my study be used in the future for other studies? It is possible that de-identified data from this study could be used for future research or shared with other researchers for use in studies, without additional informed consent. De-identified means that any codes and personal information that could identify you will be removed before the data is shared. 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: Dr. Lisa Borrero (principal investigator) - (317) 791-5944 borrerol@uindy.edu Dr. Rochelle Bourassa (989) 751-5950 ferre1rm@cmich.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. SIGNATURE: I confirm that I understand the purpose of the research and the study procedures. I understand that the interview will be recorded, and that Dr. Bourassa will access my medical records to obtain information relevant to the study. I understand that I may ask questions at any time and can withdraw my participation without prejudice. I have read this consent form. My signature below indicates my informed consent. THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE Printed Name of Participant Participant Signature Date Printed Name of Person Obtaining Consent Signature Date 60 THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE 61 Appendix C: Interview Guide Thank you for your willingness to be interviewed today. As you know, this interview is taking place as part of my doctoral project in the Doctor of Health Science program at the University of Indianapolis. The purpose of my research is to understand what life is like for older adults living in skilled nursing facilities who have a chronic wound. The interview will last approximately 45-60 minutes. Everything you tell me will remain confidential. If you have any questions or concerns throughout the interview, please feel free to ask. You may skip any question(s) you do not feel comfortable answering; you can also stop the interview at any time. Do you have any questions before we begin? Are you comfortable starting the interview now? Now that we are ready to start, I will begin the audio recording. 1. Tell me what you know about your wound. a. How and when did your wound develop? b. What types of treatments have you received for the care of your wound? 2. Tell me about what its like living with your wound. a. Tell me a little about what your emotions have been like during the time that you have had your wound? i. Tell me a little bit about your friendships and other relationships. b. Tell me what its like for you to get around. i. Tell me about your interaction in the facility. Are you participating in activities? ii. Describe your typical day. 3. Tell me about any challenges you have faced resulting from your wound. a. Are you able to be involved in the care of your wound? Why or why not? THE MEANING OF CHRONIC WOUNDS IN PATIENTS IN LONG TERM CARE b. Do you feel your wound is being managed properly? Why or why not? 4. Tell me about what successes you have had with your wound care and healing process. a. What helped make that successful? 5. Is there anything else that you would like to share before we end the interview? I would like to thank you again for your time and participation in this interview. After I review your interview, I will be following up with you to be sure that my interpretation meets what you were saying. Feel free to contact me at any time if you have any questions. 62  ...

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SELF-REFLECTION ABILITY OF DOCTOR OF PHYSICAL THERAPY STUDENTS 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 Bliss, PT, DPT Copyright April 10th, 2019 By: Rebecca A Bliss, PT, DPT All rights reserved Approved by: Sara Scholtes, PT, DPT, PhD Committee Chair Gail Jensen, PT, PhD, FAPTA Committee Member Chris Gillette, PhD Committee Member Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program University of Indianapolis Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis Running head: SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS Self-Reflection Ability of Doctor of Physical Therapy Students Rebecca Bliss University of Indianapolis 1 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 2 Abstract The ability to self-reflect has been associated with the highest level of learning and a necessary part of the clinical reasoning process for physical therapy students. Measurement of the ability to self-reflect has not been standardized in health science education but has been shown to be associated with other non-cognitive traits contributing to academic and professional success. The Self-Reflection and Insight Scale (SRIS) was utilized to measure pre and post self-reflection ability among physical therapy students following intentional guided reflective clinical reasoning activities. Investigation self-reflections relationship to grit, coping self-efficacy, and emotional intelligence was also explored. Paired t test analysis revealed a significant improvement in SRIS total scores as well as Engagement subscale, p = .009 and p <.001 respectively following intervention. Pearson correlation revealed a low to moderate positive relationship between selfreflection and the following variables; grit (r =.35), Global Trait of emotional intelligence (r = .41) and emotional intelligence constructs of Emotionality (r = .51) and sociability (r = .39). Guided reflection that is learner-centered during didactic studies may assist in development of professional formation and life-long learning. Creating learners who engage in self-reflection prior to clinical practice is essential to foster development of clinical reasoning skills necessary for todays complex health care environment. The results of this study show a potential method for improving a students ability to self-reflect on performance and make adaptations for future learning situations. Keywords: clinical reasoning, reflection, non-cognitive traits SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS Table of Contents Title Page..1 Abstract....2 Chapter 1: Introduction5 Purpose.6 Chapter 2: Literature Review...7 Theories of Self Reflection..7 Reflective Practice for Clinical Reasoning..9 Outcomes of Reflective Learning in Health Science Education..11 Physical Therapy Education.12 Significance of Measuring Reflection in Physical Therapy Education13 Non-Cognitive Traits in Professional Practice.14 Chapter 3: Method15 Study Design.15 Study Participants..15 Data Collection..15 Operationalization of Variables.16 Instruments.16 Procedures..19 Data Analysis.21 Chapter 4: Results..23 Descriptive Statistics..23 Results of Pre and Post Survey..24 3 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS Results of Correlational Analysis24 Procedure and Results of Multiple Regression24 Chapter 5: Discussion ..25 Limitations....28 Implications for DPT Education and Future Research.29 Conclusion30 References31 Tables...40 Table 1: Descriptive Statistics for Demographic Data 40 Table 2: Means, Standard Deviations and Correlations for Pre-Survey Variables..41 Table 3: Pre and Post-SRIS Survey Results.42 Table 4: Multivariable Linear Regression Predictors..43 Appendix A..44 Self-Reflection and Insight Pre-Survey...44 4 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 5 Self-Reflection Ability of Doctor of Physical Therapy Students Self-reflection is the ability to integrate or explore an experience to develop a new application, solution, or understanding and is an essential skill needed for clinical decision making in todays complex healthcare system (Jensen, Hack, Nordstrom, Gwyer, & Mostrom, 2017). Adaptive critical thinking is necessary for physical therapy students to thrive in clinical practice and produce clinically significant changes and improvements in functional outcomes of patients (Christensen et al., 2017; Schumacher, Englander, & Carraccio, 2013). The ability to self-reflect has been associated with the highest level of learning and a necessary part of the clinical reasoning process (Huhn, 2017; Plack & Driscoll, 2011). Fostering master learners in medical education requires the student to possess the ability to bring self-awareness, reflection and continued assessment of self-performance that leads to adaptability and clinical reasoning (Schumacher et al., 2013). Educators are tasked with the challenge of developing studentcentered methodologies that create meaningful and authentic scenarios related to the profession of physical therapy in order to foster clinical reasoning skills (Jason & Westberg, 2018). Currently there is no consistency in teaching methodologies of clinical reasoning in entry-level physical therapist education but is a critical learning outcome required by the Commission on Accreditation in Physical Therapy Education (CAPTE) (Christensen et al., 2017). While limited research has focused on non-cognitive traits and academic and clinical success of health science students, there are some general findings in the literature that suggest ways in which non-cognitive traits are shown to contribute to a students success. Non-cognitive traits, including emotional intelligence, grit, and self-efficacy in coping have contributed to academic success, positive professional behaviors, and leadership potential (Johnson, 2015; Stoffel & Cain, 2018; Wainwright, Shepard, Harman, & Stephens, 2010). Recently, the skill of SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 6 self-reflection has been identified as a contributing non-cognitive predictor of positive professional performance in both programmatic and post-academic success among physical therapy students, (Cook, McCallum, Musolino, Reiman, & Covington, 2018). Through selfreflection, gaps between academia and practice may be minimized while preparing professionals for the demands of clinical work and success in the profession. Currently, there is no best-practice to effectively assess a students ability to demonstrate change in self-reflection in physical therapy education, which is one of the mainstays of determining readiness for clinical reasoning in practice. Clinical reasoning in both the classroom and clinic is dependent on the skill and ability to self-reflect and is a crucial part of the process of becoming a professional in the field of health care (Institute for Healthcare Improvement, 2017). The ability to quantify and show change in self-reflection among physical therapy students may improve an educators ability to gauge willingness to identify need for change and adaptability in clinical practice, therefore fostering the master adaptive learner (Cutrer et al., 2017). The primary purpose of this study is to determine if self-reflection improves following a semester of guided reflective clinical reasoning activities completed by Doctor of Physical Therapy (DPT) students. Further, this study will also examine non-cognitive traits that may contribute to students improved ability to self-reflect such as grit, emotional intelligence, and coping self-efficacy (Cutrer et al., 2018; Hammond, 2017; Johnson, 2015; Van Veld, Slaven, Reynolds, Shupe, & Woolery, 2018). To meet the studys purpose the following research questions will be addressed: In second-year DPT students, does self-reflection improve as measured by the SelfReflection and Insight Scale (SRIS) following a semester of reflective clinical reasoning activities? SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 7 Do non-cognitive traits such as grit, as measured by the Short Grit Scale (Grit-S), emotional intelligence as measured by Trait Emotional Intelligence Questionnaire-Short Form (TEIQue-SF) and, self-efficacy in coping as measured by Coping Self-Efficacy Scale (CSE) show a relationship to self-reflection among DPT students? Literature Review The practice of reflection among health science students is essential to developing clinical reasoning skills and has been identified as one of the non-cognitive traits predictive of positive professional performance of DPT students (Cook et al., 2018; Fragkos, 2016). The aim of introducing early reflective practice in medical education is to lead to transformation of skills along the continuum with the goal of increased levels of comprehension, understanding, and insight into clinical care (Greenfield et al., 2015). A medical education model focused on skill acquisition describes the ability to self-reflect as a necessary quality needed for learning, adapting, and adjusting phases for todays complex health environment (Cutrer et al., 2017). Ninety-one percent of physical therapy educational programs report utilizing reflective practice in their curricula though consistent methods of measurement of change have not been established (Christensen et al., 2017). There has been a substantial increase in publications surrounding the utilization of reflection in health science education in the last several years and established methods of measurement are becoming more recognized and essential for the learning continuum (Fragkos, 2016; Wong, Whitcombe, & Boniface, 2016). Theories of Self-Reflection Self-reflection has been defined as the evaluation of ones thoughts, feelings, and behavior and is a metacognitive factor central to the process of change (Grant, Franklin, & Langford, 2002b). Insight is the awareness of ones own performance or performance of others SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 8 and the recognition of the importance of reflection to make appropriate judgements (Roberts & Stark, 2008). John Deweys (1938) definition of reflective thinking involves reflexivity in thought, which is defined as purposeful and aims at a conclusion. Reflection involves distinctive sequential ordering of ideas and thought that build upon each other and determines the next outcome in the series while utilizing the ability to refer to the previous consecutive thoughts (Dewey, 1938). Reflection is not random thinking or irregular in process, one must recognize a problem exists and see the importance of inquiry to establish a solution. In addition to providing a description on reflective thinking Dewey purposed distinct phases of reflective thinking; 1) state of uncertainty related to a distinct problem or an experience of unexpected change, 2) the act of resolving doubt by searching for a solution to a problem, and 3) converting action into purposeful intelligent action (Dewey, 1933). Educators must create meaningful and purposeful learning experiences that will foster curiosity, encourage reflection and stimulate learning and growth for the student (Musolino & Mostrom, 2005). Schn (1983) built upon Deweys work and recognized three elements of reflection: active participation in intellectual processes, self-exploration of problems or experiences, and resulting alteration in perspective or newly gained insight. Reflection has been deemed the highest level of cognitive analysis and is essential to conceptualize a change in perspective (Plack & Driscoll, 2011). Schns model of the reflective process is representative of necessary components for lifelong learning and professional growth. Learners begin with foundational knowledge and skills and through practical application begin to apply within context of individual situations (Blatt, Plack, Maring, Mintz, & Simmens, 2007). Schn (1983) further defined levels of reflective practice as a developing skill that includes three distinct components. His model can be applied within the context of physical therapy practice as a learner progresses SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 9 from novice to expert (Plack & Driscoll, 2011). Reflection-in-action (RIA) is the utilization of metacognitive skills in the moment during patient-therapist interaction and often directs the process of experimentation. Reflection-on-action (ROA) happens after an individual looks back on what previously occurred and may result in a broadened or revision the their clinical decision making process (Schn, 1983; Wainwright et al., 2010). Novice practitioners have been shown to utilize ROA more frequently and expert practitioners show the ability to implement RIA and also apply the process of ROA to further engage in revised clinical decision making and continued learning (Wainwright et al., 2010). Schns theory is easily integrated into clinical practice and assists in transformative learning among health science students (Blatt et al., 2007). Killion and Todnem (1991) have taken Schns work one step further to describe how continuous reflection can facilitate improvements in practice and contribute to the evolvement of an expert practitioner. Kolbs Learning Cycle (KLC) builds upon experiential learning and addresses the interdependent relationship between reflection and action, which is the center of the learning process (Plack & Driscoll, 2011). Effective learners cycle through a process of concrete experiences, reflective observation, abstract conceptualization and active experimentation as they navigate the skills needed for professional practice (Kolb & Kolb, 2005). The heterogeneous definitions of selfreflection all unite on the premise to improve student learning through fostering critical thinking and development of professional values and skills (Lew & Schmidt, 2011). Reflective Practice for Clinical Reasoning Clinical reasoning has been defined as an inferential process used by practitioners to collect and evaluate data and to make judgements about the diagnosis and management of patient problems (Lee & Ryan-Wenger, 1997, p. 101). It includes applying both cognitive and SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 10 psychomotor skills based on foundational theory and current evidence as well as reflective thought to be able to engage and react to individual situations in clinical practice (Atkinson & Nixon-Cave, 2011). When the unexpected occurs or a novel situation presents, reflection is needed in the moment, or the skill of reflection-in-action, to drive behavioral change and make adjustments based on knowledge and experience (Wainwright et al., 2010). Educational experiences must be deliberate and high quality allowing various levels of reflectivity to develop throughout the process of learning with a common goal in mind (Van Manen, 1977). Recent literature has reinforced that reflection is an essential process to developing clinical reasoning skills and tools have been developed to enhance these skills in both entry-level and postprofessional physical therapist educational programs (Atkinson & Nixon-Cave, 2011; Furze et al., 2015). Attributes of both novice and clinical experts in the field of physical therapy practice have been described by Jensen, Gwyer, and Shepard (2000) as; 1) multi-dimensional and patientcentered knowledge; 2) collaborative and reflective clinical reasoning skills; 3) observational and manual skills focused on functional movement analysis; and 4) consistent virtues. Reflective practice is a common theme in development of clinical decision-making skills and is currently being thread through physical therapy curriculums in the United States. One methodology is the use of reflective narrative as a pedagogical tool for educators to assist students, residents and novice clinicians develop reflective clinical reasoning and reflexivity in clinical practice (Greenfield et al., 2015). The practice of narratives can also be utilized to aid in the integration of patients perspectives, culture, psychosocial attributes as well as socioeconomic considerations when executing clinical decision making in todays complex health care system (Greenfield et al., 2015; Institute for Healthcare Improvement, 2017). SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 11 Key characteristics of reflection as part of the pedagogy of physical therapist education include: active participation and deliberate cognitive processing, description and interpretation of occurrence, opportunities to further explore and understand experiences, investigate others perspectives and values, and can add value to the students metacognitive skills and ability to self-regulate in clinical practice (Greenfield et al., 2015). Reflection can be both individual and collaborative and should be integrated throughout the length of both didactic and clinical curriculums (Christensen et al., 2017; Greenfield et al., 2015). Outcomes of Reflective Learning in Health Science Education Reflective learning has numerous associated positive outcomes among health science student learners including improved cultural competence, clinical decision making, interpersonal self-efficacy, performance in clinical skills, and development of motivational interviewing skills (Blatt et al., 2007; Chuan-Yuan, Ying-Tai, Ming-Hsia, & Jia-Te, 2013; Huhn, 2017; Olson, Bidewell, Dune, & Lessey, 2016; Schoo, Lawn, Rudnik, & Litt, 2015). A variety of reflective learning methodologies exist and vary from reflective narrative integration, video-based learning opportunities, lecture-guided instruction, self-evaluation of practice and reflect-revisit paradigm (Huhn, 2017; Jensen & Denton, 1991; Olson et al., 2016). Reflection that occurs in the learning process has been shown to enhance teaching methodologies as well as facilitate improved engagement within the classroom among health science learners (Blatt et al., 2007; Huhn, 2017). Improved academic performance as well as student satisfaction with the learning methodology involving self-reflection has been established and themes have been identified that co-existed with positive student feedback (Blatt et al., 2007). Students reported improved enhancement of clinical decision-making skills and patient education/counseling delivery, satisfaction and improved confidence paralleled with patient SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 12 satisfaction and confidence as well as clinical realism (Blatt et al., 2007). This research suggests that because of reflections unique ability to deepen a students understanding of course material and facilitate introspection of ones own performance and behavior, it is a powerful way to enhance the learning process and foster clinical reasoning skills. Physical Therapy Education The ever-changing health care system in the United States has become more environmentally complex. Restructuring efforts associated with the Affordable Care Act and Quadruple Aim have moved emphasis toward cost, quality and access (Institute for Healthcare Improvement, 2017). In a recent Carnegie-modeled qualitative study aimed at defining excellence and innovation in physical therapy education, the authors identified a path forward and call to reform. This includes a focus on; (1) student-centered praxis of learning, (2) a pedagogy aimed at professional problem based activities to insure cognitive, psychomotor and affective domains of learning are solidified prior to graduation to insure independent practitioners and, (3) creation of adaptive learners that will succeed in the ever changing health care system (Jensen, Nordstrom, Mostrom, Hack, & Gwyer, 2017). Currently, programs are reporting active engagement in clinical reasoning within physical therapist educational curriculums, though only a small number of these programs have adopted a common definition of clinical reasoning (Christensen et al., 2017). Despite high number of reports of reflective practice integration in educational programs there is currently no uniform methodology of teaching reflective practice nor measurement of change in a students ability to self-reflect (Christensen et al., 2017). It must be with caution that the pedagogy of reflective teaching not solely be a means to learn knowledge, skills and attitudes and therefore not be a means to an end but continue to draw upon epistemologies of practice and SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 13 critical inquiry (Ng, Kinsella, Friesen, & Hodges, 2015). Current reported methods of assessment include a 360-degree self-assessment tool, self-developed rubrics, the International Classification of Functioning and Disability (ICF) model, the Mezirow framework, the American Physical Therapy Association (APTA) Physical Therapy Clinical Performance Instrument (CPI) and program-specific models and competencies (Christensen et al., 2017). A specific set of reflective competencies have been proposed in medical education as students progress from classroom curricula to clinical practice. This four-step approach includes: priming, noticing, processing, and choosing behaviors that support their respective professional identity (Holmes, Harris, Schwartz, & Regehr, 2015). Uniformity via a standard measurement tool could assist in evidenced based practice of educational methodology that improves physical therapy students self-reflection and shows readiness for clinical practice. Significance of Measuring Reflection in Physical Therapy Education Reflection has been deemed essential in the development of clinical reasoning skills in the field of both entry-level and post-professional physical therapy students and practitioners (Atkinson & Nixon-Cave, 2011; Christensen et al., 2017; Wainwright et al., 2010). Physical therapy students have shown change in their self-reflection and insight ability as well as change in critical thinking when pedagogy focused on enhanced clinical reasoning skills were implemented in conjunction with reflective narratives (Huhn, 2017). To date, variability persists in methodology of measurement of self-reflection despite ninety-one percent of programs utilizing reflection in physical therapist education (Christensen et al., 2017). There has been limited research in physical therapy education involving reflective learning to enhance and improve self-reflection among physical therapy students, though it has been shown to be effective in promoting self-efficacy, clinical decision making, growth in professionalism and cultural SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 14 competence among health science students (Huhn, 2017; Olson et al., 2016; Roberts & Stark, 2008; Schoo et al., 2015). Non-Cognitive Traits in Professional Practice Academic preparation with respect to both cognitive and non-cognitive attributes may assist students in their pursuit of professional goals and career success and the skill of reflection can be developed and measured among physical therapy students. Non-cognitive traits among physical therapy students have been shown as predictors of positive professional success in a recent Delphi-Study (Cook et al., 2018). Traits identified by leaders in physical therapist educational programs include; critical thinking, active participation in the learning process, ethical practice, good communication skills, conveying professionalism, and responsibility for ones own actions (Cook et al., 2018). Reflection was also identified as part of the metacognitive process contributing to positive professional success and has shown to be associated with the development of clinical decision making associated with critical thinking (Cook et al., 2018). Grit and resilience are also considered non-cognitive traits associated with motivation, attitude and temperament rather than intellect and have been increasingly recognized as important skills to identify and develop in medical professionals (Hammond, 2017). These non-cognitive traits in addition to emotional intelligence and self-reflection have been recently studied in health science education as contributors to both academic success and professionalism as well as predictors of future leadership roles (Palisoc et al., 2017; Pate et al., 2017). Non-cognitive traits essential to the practice of physician assistants have been identified as emotional intelligence, empathy and professionalism and a more holistic admission process has been suggested (Brenneman et al., 2018). Non-cognitive traits related to the constructs associated with emotional/social intelligence appear to influence academic success and SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 15 professional performance within the context of the ever-changing healthcare system and can also have a positive effect on diversity (Brenneman et al., 2018; Tartas et al., 2016). The utilization of non-cognitive traits and their association with ability to self-reflect has not been previously studied among physical therapy students yet has shown relationship to academic success as well as clinical reasoning. Method Study Design A quasi-experimental study using a single-group pretest-posttest design was utilized to determine if self-reflection improves following a semester of self-guided clinical reasoning and reflective practice. The study took place at Wingate Universitys Department of Physical Therapy Program from January 7, 2019 through March 8th, 2019. Prior to participant recruitment, the study was approved by the University of Indianapolis Institutional Review Board (IRB) with a reliance agreement with Wingate University. Study Participants All second-year, fourth-semester DPT students (N = 44) at Wingate University during the 2018-2019 academic year were eligible to participate in the study. Inclusion criterion were current full-time enrollment in the second year of the DPT program at Wingate University. There were no exclusion criteria for participation in the study. Data Collection The following data were collected from a self-administered questionnaire: age, gender, undergraduate major, previous work experience, Self-Reflection and Insight Scale (SRIS), Short Grit Scale (Grit-S), Trait Emotional Intelligence Questionnaire-Short Form (TEIQue-SF), and, the Coping Self-Efficacy Scale (CSE). Data were collected by the primary investigator (R. B.) on SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 16 the first day of classes in semester four of the DPT Program at Wingate University. Upon completion of the semester, the SRIS was re-administered to all study participants on the last day of classes prior to final exams by the primary investigator. Following data collection, scores were imported into an Excel spreadsheet by the primary investigator. Operationalization of variables. For the purpose of this study self-reflection is defined as the evaluation of ones thoughts, feelings, behavior (Grant, Franklin, & Langford, 2002a; Roberts & Stark, 2008). Insight is operationalized as the awareness of ones own performance or performance of others (Grant et al., 2002a; Roberts & Stark, 2008). Self-reflection and insight were measured by the SRIS. Grit is defined as an individuals passion and perseverance for accomplishing long-term goals (Duckworth, 2016) and was measured by the Grit-S ( Duckworth & Quinn, 2009). Emotional intelligence is the capability of an individual to recognize their own emotions and those of others, discern between different feelings and label them appropriately, use emotional information to guide thinking and behavior, and manage and/or adjust emotions to adapt to environments or achieve one's goal(s) (Cooper & Petrides, 2010). Emotional intelligence was measured by the TEIQue-SF. Coping self-efficacy is defined as ones confidence in their ability or coping resources to make a change in ones life (Chesney, Neilands, Chambers, Taylor, & Folkman, 2006) and was measured by the CSE. Instruments Self-Reflection and Insight Scale. The SRIS is based on theories of metacognition and self-regulation and is intended to measure the readiness of individuals for purposeful behavioral change (Grant et al., 2002a). The tool is comprised of three domains, the need for reflection, engagement in self-reflection, and insight (Grant et al., 2002a). The SRIS is built on the premise that self-reflection and insight are essential for self-regulation. The scale consists of 20 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 17 items rated with a six-point Likert-like scale from disagrees strongly to agrees strongly. Several items are reversed to discourage automatic answers. A total score is computed, and higher scores indicate higher ability to self-reflect. Internal consistency of this scale has been reported as Cronbachs of .91 for the self-reflection scale and .87 for insight among university undergraduates and when utilized among medical students reported Cronbachs from .71 to .91 for self-reflection and .82 to .87 for insight (Grant et al., 2002a; Roberts & Stark, 2008). Each subscale shows good internal consistency (> .80) and a strong relationship between the need for reflection and engagement in reflection (r = .77). (Roberts & Stark, 2008) Insight has been shown to be related to need for reflection (r = .22) and age (r = .21), but not to the process of engaging in reflection (r = .06) among medical students (Roberts & Stark, 2008). Written permission from the original author was obtained to utilize the SRIS. Short Grit Scale. The Short Grit Scale (Grit-S) is designed to measure trait-level perseverance and passion for long-term goals (Duckworth & Quinn, 2009). The Grit-S has a 5response Likert-like option for each item very much like me to not like me at all (Duckworth & Quinn, 2009). The Grit-S offers two domain scores, including Consistency of Interest (four items) and Perseverance of Effort (four items), and a total score where higher scores represent higher grittiness. The Grit-S has been shown to have adequate internal consistency with Cronbachs ranging from .73 to .79 for Consistency of Interest and .60 to .78 for Perseverance of Effort among university students and adults aged twenty-five or older (Duckworth & Quinn, 2009). Stability of the Grit-S measure over a year timeframe has a reported test-re-test reliability of r = .68 and scores do not differ between genders (Duckworth & Quinn, 2009). Written permission was granted to utilize the Grit-S. Trait Emotional Intelligence Questionnaire-Short Form. The TEIQue-SF is a self- SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 18 report questionnaire that has been developed to cover the trait of emotional intelligence sampling domain. The TEIQueSF consists of 30 items designed to measure global trait emotional intelligence (e.g., I usually find it difficult to regulate my emotions; Im usually able to influence the way other people feel) (Cooper & Petrides, 2010). The TEIQue-SF uses a 7-item Likert-style response option format, ranging from completely disagree to completely agree. A Global Trait emotional intelligence score is calculated by summing up the item scores and dividing by the total number of items. A high degree of similarity in scoring on the TEIQue-SF and TEIQue-LF for each subscale and the global trait emotional intelligence (EI): Well-being (r = .76),Self-control (r = .69), Emotionality (r = .78), Sociability (r = .71), and Global Trait EI (r = .83) has been reported (Laborde, Allen, & Guilln, 2016). The latest version of the TEIQueSF (version 1.50) is available, free of charge, for research purposes (Cooper & Petrides, 2010). Coping Self-Efficacy Scale. The CSE is a 26-item measure of perceived self-efficacy for coping with challenges or threats. Each item on the tool is scored using a 10-point Likert scale, cannot do at all to certain can do, with a higher score indicating a higher perceived coping ability. The CSE consists of three subscales, use problem-focused coping, stop unpleasant emotions or thoughts, and get support from friends and family and each has been shown to have adequate internal consistency with respective Cronbach s of .91, .90 and .80 in individuals dealing with life challenges related to health concerns (Chesney et al., 2006). For the CSE, the factors have been shown to be moderately related: use problem-focused coping was positively correlated with stop unpleasant emotions and thoughts, r = .67 and with get support from friends and family, r = .60 (Chesney et al., 2006). Stop unpleasant emotions and thoughts was, in turn, positively moderately correlated with get support from friends and family, r = .54 (Chesney et al., 2006). SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 19 Procedures Recruitment. Following the approval from the IRB, participants were approached and recruited on the first day of class of semester four in the DPT Program at Wingate University. Recruitment and instructions took place in classroom 308 on the third floor of the Burnside Dalton building within the Department of Physical Therapy. The primary investigator introduced herself, described the study in detail and provided contact information. Participants received a link to the electronic survey delivered via their university email addresses for both the pre and the post-survey assessment. Informed consent. Individuals who were interested in participating in the study answered yes for the first question of the electronic survey. Students who responded yes were prompted to the first question. If the participants declined, the survey was terminated. Participant withdrawal at any point in time during the study with no consequences was emphasized during the research study introduction to the subjects as well as included in the informed consent. Survey administration. An electronic survey via Qualtrics was utilized to distribute both questionnaires. Each questionnaire remained open for a week allowing students to complete the survey outside of the classroom and on their own electronic device. Two reminders were delivered at three-day intervals during that time frame to improve response rate. The students created a unique identification code to use with both the pre and post-survey assessments for data pairing. The unique identification code consisted of the first initial of their mothers first and last names and last four digits of the students cell phone number. Upon agreement to participate in the research, each participant was asked to complete demographic information followed by SRIS, Grit-S, TEIQue-SF, and CSE as they relate to their role as a physical therapy student. The SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 20 electronic pre-questionnaire took less than 30 minutes to complete (Appendix A). An electronic version of the SRIS was re-administered on the last day of class following completion of the eight-week semester, delivered via university email and remained open for a week with two subsequent reminders at three-day intervals. The post-electronic survey took less than 10 minutes to complete. Data management. All study related material was kept in a locked cabinet or on a password protected computer in the primary investigators office. Extracted data from Qualtrics were imported into an Excel sheet on a password protected computer in the same location after the initial survey and again post-survey completion. After data cleaning, all data from the Excel sheet were imported into SPSS for data analysis. Intervention. Guided reflective practice consisted of a series of questions derived from Creighton Universitys Clinical Reasoning Grading Rubric (Furze et al.,2015). Lab practicals were completed at both midterm and final time points, four weeks apart. The lab practicals were case-based clinical scenarios intentionally designed specific to course content and neurological patient population. Individual video recordings of the lab practicals were completed and sent to each individual student to re-watch. Guided reflective questions on their own performance and application of clinical reasoning during psychomotor performance were completed and submitted to the course instructor (Furze et al., 2015). The following open-ended questions were utilized to guide reflective practice and clinical reasoning in context to patient conditions and the qualitative analysis of the reflective narratives are outside the scope of this study: Affective/Communication: How do you think your professional interaction went with your patient? What parts of the patient interaction did you feel uneasy about? Was your communication clear and in layman terms? Were you relaxed and not rushed? SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 21 Did you appropriately adjust your communication style given your case? Psychomotor/Cognitive: What struggles did you have when determining the best neurological exam component? If you did not choose the most appropriate test, what would you choose? Did you incorporate the ICF model to assist you in making the clinical decision? What was your clinical reasoning behind what you chose? Were there any gaps or uncertainties in your foundational knowledge that created hesitation in your decision making? How was your performance/instructions during your exam components? Conceptual Reasoning: How do you feel the performance of your intervention and home program went? What could you have done better? What did you do well? Did you design a safe activity for the setting? Were you confident in your patient handling skills and facilitation techniques? Why or why not? What would you do differently if you were able to perform this practical again? What struggles or uncertainties from this practical will you use moving forward to improve as a student physical therapist? How will you take information from this practical and apply it during clinical practice? Data Analysis An a priori prospective power analysis was performed that indicated a sample size of fifty-five was needed to show a statistically significant change of self-reflection scores (Faul, Erdfelder, Lang, & Buchner, 2007). Data screening was used to identify accuracy, missing data, outliers, linearity, and heteroscedacity. No violations of the data assumptions were found. Descriptive statistics were used to describe the sample and both pre-intervention and postintervention assessment scores. Nominal data are presented as frequencies and percentages while SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 22 interval and ratio data are reported as means and standard deviations for data that were normally distributed. Normality of the data was assessed using the Shapiro-Wilk test. All hypothesis tests were two-tailed and an alpha value of less than .05 was considered statistically significant. Data were analyzed using IBM SPSS Statistics for Windows, Version 25.0 (IBM Corp, Armonk, NY). Aggregate, de-identified data were exported to and stored within the investigators encrypted, password-protected computers in a locked office for analysis. Only investigators had access to the data. The following were the aims of the study. Analysis by Aim Aim 1: In second-year DPT students, does self-reflection improve as measured by the Self-Reflection and Insight Scale (SRIS) following a semester of reflective clinical reasoning activities? A paired t test was used to determine if there was a significant change in SRIS scores following a semester of reflection practice activities with a Bonferroni correction (p = .013) Intervention effect size was calculated from the results using equations described by Cohen (1992) and interpreted as follows; > -.15 and < .15, negligible, > .15 and < .40, small, > .40 and <.75, medium, > .75 and < 1.10, large effect, > 1.10 and < 1.45, very large effect and > 1.45, huge effect (Thalheimer & Cook, 2002), Aim 2: Do non-cognitive traits such as grit, as measured by the Grit-S, emotional intelligence as measured by the TEIQue-SF and, self-efficacy in coping as measured by the CSE show a relationship to self-reflection among DPT students? To determine if there was a significant relationship between baseline SRIS tests scores and baseline non-cognitive measures (i.e., Grit-S, TEIQue-SF, and CSE) separate bivariate analyses were conducted. For the data that were normally distributed a Pearson correlation was SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 23 utilized, and a Spearman rho was utilized for non-normally distributed data (Plichta Kellar & Kelvin, 2013). The strength of correlation coefficients was interpreted as: r = .00 - .29, negligible; r = .30 - .49, low; r = .50 - .69, moderate; r = .70 - .90, high (Mukaka, 2012). A multivariable linear regression model assessed the relationship between grit, emotional intelligence, and coping and self-reflection among the sample of DPT students. Results A total of 44 participants were enrolled in the study and 41 completed the pre and postsurvey data collection with a 93.2% response rate. An exploratory data analysis using a ShapiroWilk test revealed the following pre-survey variables were normally distributed: SRIS total and all three subscales of insight, need and engagement in self-reflection, Grit-S total and both subscales of perseverance of effort and consistency of interest. The following variables were non-normally distributed; CSE total, subscales of use of problem focused coping, get support from friends and family, and TEIQue-SF subscale of well-being. No variables of the post-SRIS scale deviated from normality beyond p < .05. Participant Characteristics The final sample was comprised 70.7% of individuals in the age range of 20-25-year olds, of which 51.2% female, 29.3% were previous collegiate athletes, and 17.1% had previous careers. Details regarding demographics of the sample are contained in Table 1. Descriptive Statistics Pre-survey total scale scores were found to be the following; Grit-S mean was 3.79 (SD=.07), SRIS mean 85.32 (SD=1.52), CSE mean 177.71 (SD=4.53), and TEIQue-SF mean 5.36 (SD=.08). Subscale descriptive data is contained in Table 2. Post-Survey SRIS mean was 88.04 (SD=1.55) and subscale descriptive data shown in Table 3. SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 24 Results of Pre and Post Survey Aim 1 was addressed through a paired-samples t-test to compare SRIS scores before and after a semester of guided reflective clinical reasoning activities. All variables were normally distributed and therefore a paired t test was utilized with a Bonferroni correction. As shown in Table 3, there was a statistically significant difference in pre and post-total SRIS scores, t = 2.74, p = .009, as well as the subscale of engagement, t = -3.97, p = <.001 showing a medium effect of d = 0.428 and d = 0.621, respectively (Thalheimer & Cook, 2002). Results of Correlational Analysis The relationship of SRIS to other non-cognitive traits. The goal of Aim 2 was to investigate the relationship of the non-cognitive traits of grit, emotional intelligence and coping self-efficacy to self-reflection. Bivariate correlational analysis was performed utilizing a Pearson Product Correlation for normally distributed data and a Spearman Rho for non-normally distributed data. As shown in Table 2, the SRIS score was significantly low to moderately positively correlated to Grit-S total score r = .35, p = .026, TEIQue-SF Global Trait score, r =.41, p = .008, as well as TEIQue-SF subscales of Emotionality, r = .51, p = .001, and Sociability, r = .39, p = .012. Procedure and Results of Multiple Regression Test Procedure for multiple regression. An Enter method for multiple regression analysis was used to examine the relationship between the construct of self-reflection and other noncognitive traits. The F-test was used to assess whether the set of independent variables collectively predicts the dependent variable and was found to be significant, (F (3,36) = 6.94, p = .001). The following three predictors; Grit subscale of Perseverance of Effort, CSE total and TEIQue-E model predicted 31.4% of the variance for self-reflection (R2=0.314). Unanticipated SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 25 multicollinearity between the variables secondary to the small samples size was found and therefore a forward stepwise enter method was then completed to find the model of best fit. This narrowed the following two predictors; TEIQue-E and Grit subscale of Perseverance of Effort to explain 25.3% of the variance of self-reflection (R2 = .253). Analysis of the standardized coefficients revealed Emotionality subscale of the TEIQue-SF ( = .478, p = .001) was a significant predictor of SRIS scores among second year DPT students. Regression coefficients can be found in Table 4. Discussion The metacognitive skill of self-reflection is an essential contributor to ones ability to clinically reason in todays rapidly changing healthcare field. Todays societal needs are becoming more complex and physical therapy curricula should prioritize learning experiences that effectively prepare future practitioners with the skills and knowledge to be active contributors within the healthcare environment (Jensen, Mostrom, Hack, Nordstrom, & Gwyer, 2019). The purpose of the study was two-fold: to determine if self-reflection as measured by the SRIS scale improved following a semester of guided reflective clinical reasoning activities as well as examine the relationship between self-reflection and other non-cognitive traits among second year DPT students. The results of this study provide a framework for an educational methodology aimed at increasing self-reflection of DPT students as well as shows non-cognitive traits contributing to the ability to self-reflect. Self-reflection as measured by the SRIS showed significant improvement following intentional guided reflective clinical reasoning activities in both overall SRIS score and the subscale of engagement in self-reflection. Students were able to view their recorded performance following lab practicals and engage in guided reflective narratives aimed to critically appraise their psychomotor, cognitive as well as affective domains of learning. Students SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 26 were also able to think about the uncertainties that were experienced during the interaction. The students improvement in self-reflection shows that by intentionally designing a learner-centered educational method, students were able to engage in reflective practice of their own performances and explore the experience on a deeper foundation to develop a new application, solution, or understanding for future interactions. The SRIS and Engagement subscale is designed to assess the inspection and evaluation of ones thoughts, feelings and behaviors (Grant et al., 2002). The statistically significant difference noted in overall SRIS and Engagement subscale from before to after intervention suggests that the guided reflective clinical reasoning had a medium effect on the students metacognition d = 0.428 and d = 0.621 respectively. The lack of significant change in Insight and Need for self-reflection is not unexpected as Insight is designed to assess ones clarity of insight about ones thinking. Given that these students were in the beginning of their second year of DPT education with lack of clinical experience and practice, a significant change in clarity of thinking or need for selfreflection would not be expected (Grant et al., 2002). Similar results of improvement in SRIS scores among DPT students were found when utilizing a specific one-credit course designed to develop critical thinking and reflective skills, showing positive effects on improving students willingness and ability to engage in thinking about their thought processes (Huhn, 2017). Practical application of significance of change scores is more difficult to assess (2.73-point change in overall score), but one would expect these scores to improve incrementally; improvement over an 8-week time period can be considered a positive outcome. In previous studies positive change scores were also reported both at 6-week intervals for DPT students (1.35-point change) and medical students at a 1-year interval (2.9point change) (Carr & Johnson, 2013; Huhn, 2017). SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 27 Relationships between non-cognitive traits and self-reflection among DPT students were examined and results show low to moderate positive correlations between SRIS total score and the following; Grit-S total score, TEIQue-SF Global Trait, as well as TEIQue-SF subscales of Emotionality, and Sociability. Emotional intelligence is a set of emotional and social skills that influence the way we perceive and express ourselves, develop and maintain social relationships, cope with challenges and use emotional information in a meaningful way (Cooper & Petrides, 2010). Following a multiple regression analysis, two of the variables, TEIQue subscales of Emotionality and CSE total score were significant predictors of SRIS total score. The Emotionality construct has been defined as the compilation of the emotional perception of self and others, emotional expression, perceptions of relationships, and empathy (Siegling, Vesely, Petrides, & Saklofske, 2015). Coping self-efficacy is defined as ones confidence in their ability or coping resources to make a change in ones life. As emotional intelligence scores increased, it would only make sense that ones ability to self-reflect would improve as well. Emotional intelligence has also been linked to health professional students well-being and life-satisfaction, which could also affect ones ability to self-reflect during both didactic and clinical experiences (Carvalho, Guerrero, & Chambel, 2018). In addition, previous studies have shown that noncognitive traits, specifically emotional intelligence have a positive impact on patient outcomes, teamwork skills, dealing with stress and patient satisfaction (Gribble, Ladyshewsky, & Parsons, 2017). Increasing awareness and targeted interventions to improve and/or develop emotional intelligence skills in DPT students may have a direct effect on self-reflective abilities needed in todays clinical setting and lead to enriched clinical education experiences. Though overall Grit and Global Trait emotional intelligence scores showed low correlation to self-reflection it was not accepted into the predictor model for the sample and therefore should be interpreted with SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 28 caution. The construct of grit is still under exploration and claims tied to success have yet to be rigorously explored directly avenues for future research in physical therapy education (Cred, 2018). Limitations Limitations of this study include a sample of convenience at the primary investigators academic institution and therefore the results may be esoteric and not a representation of the general DPT student population. Another limitation is that the course in which the study occurred, DPT 745, was just one of five courses that the second year DPT students were enrolled in during the 8-week semester. None of the other courses involved reflective activities and prior to this intervention student had not been exposed to watching recordings of their performance. This was a novel experience in the curricula. This cannot rule out potential for cofounding variables contributing to the change in self-reflection scores. Implications for DPT Education and Future Research Variability among reflective educational methodology exists in DPT curricula and currently there is no standardized measure to show change in students self-reflective ability despite ninety-one percent of programs reporting utilization (Christensen et al., 2017). The pedagogy of reflective teaching should not solely be a means to learn knowledge, skills and attitudes and therefore not be a means to an end but continue to draw upon epistemologies of practice and critical inquiry (Ng, Kinsella, Friesen, & Hodges, 2015). Guided reflection that is learner-centered during didactic studies may assist in development of professional formation and life-long learning. Creating adaptive expertise in physical therapy practice is essential for future complex practice and is supported by the theoretical framework of Master Adaptive Learning, where individuals have potential to learn and show innovation in response to challenges in clinical practice (Cutrer et al., 2018). Learners adaptive skills need to be fostered during the SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 29 didactic curriculum so they are prepared for future learning, which is defined as the ability to learn new information, use resources effectively, and invent new methods to support learning and problem solving (Cutrer et al., 2018). Self-reflection is an essential contributor in the development of a master learner (Schumacher et al., 2013). The guided reflective practice activity utilized in this study was intentionally constructed to be complex and similar to clinical practice. This allowed the learners to experience and engage in critical thinking in a safe environment then reflect on multiple domains of performance to include communication, execution and clinical thought processes. This resulted in an improvement in self-reflective abilities among the DPT students in the sample and potential contributor to continued reflective practice and life-long learning. Previous research in the medical model has shown that essential components of adaptive expertise include willingness to reflect on practice, awareness and recognition when previous execution strategies are not working, the ability to critically think and challenge current assumptions, and the ability to reconfigure the context of the problem (Schumacher et al., 2013; Trowbridge, Rencic, & Durning, 2015). The implication and continuation of reflective practice learned from this intervention during clinical education is unknown and should be measured as well as compared to Clinical Performance Instrument (CPI) scores from learners in previous cohorts not exposed to this specific intervention. The guided reflective clinical reasoning through viewing of recorded performance should also be tested in a multi-cite centered study to show application across the general population of DPT students. It is also unknown the best timing for introduction of guided reflective practice and should be examined at various time-points in DPT curricula. Conclusion SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 30 The framework for the intervention chosen in this study related to learner-centered signature pedagogy that has been identified as an essential component contributing to excellence in physical therapy education (Jensen et al., 2019). Recommendations include emphasizing clinical reasoning and multiple ways of thinking, thus creating adaptable learners who are able to successfully engage of habits of the hand, head and heart (Cutrer et al., 2018; Jensen et al., 2019; Shulman, 2005). Creating learners who engage in self-reflection prior to clinical practice is essential to foster development of clinical reasoning skills necessary for todays complex health care environment. The results of this study show a potential method for improving a students ability to self-reflect on performance and make adaptations for future learning situations. Noncognitive traits predicting ones ability to self-reflect include constructs of emotional intelligence and may benefit from exploration and development to assist in ones ability to improve reflection. SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 31 References Atkinson, H. L., & Nixon-Cave, K. (2011). 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Journal of Physical SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS Therapy Education, 32(2), 138144. http://doi.org/10.1097/jte.0000000000000037 39 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 40 Table 1 Descriptive Statistics for Demographic Data (N=41) ______________________________________________________________________________ Characteristic N Percentage ______________________________________________________________________________ Age 20-25 29 70.7 26-30 10 24.4 31-35 2 4.88 Male 20 48.8 Female 21 51.2 Athlete 12 29.3 Non-Athlete 29 70.7 Career 7 17.1 No-Career 34 82.9 Gender Collegiate Athlete Previous Career _____________________________________________________________________________ SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 41 Table 2 Means, Standard Deviations and Correlations for Pre-Survey Variables (N=41) _____________________________________________________________________________________ Variable M SD 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 _____________________________________________________________________________________________ 1. Pre-SRIS 85.32 9.74 - 2. Pre-SRIS-I 33.85 4.31 .31* - 3. Pre-SRIS-N 26.54 4.49 .74** -.26 4. Pre-SRIS-E 24.93 5.69 .89** -.02 .68** - 5. Grit-S 3.79 0.45 .35* .28 .17 .25 - 6. Grit-PE 4.15 0.43 .23 .28 .15 .72** 7. Grit-CI 3.42 0.67 .31 ..31* .05 .25 .89** .33* - 8. CSE 177.71 29.00 .00 .10 .04 -.07 .42** .47** .30 - 9. CSE P 40.63 6.74 .05 .01 .17 -.06 .42** .52** .26 .80** - 10. CSE Stop 24.98 6.99 -.12 .19 -.19 -.20 .19 .20 .13 .78** .55** 11. CSE Support 21.71 5.50 .01 -.12 -.10 .34* .29 .31 .54** .20 12. TEIQue-SF 5.36 0.48 .41** .46** .19 .20 .31 .39* .16 .55** .40** .36* .53** - 13. TEIQue-WB 6.22 0.65 -.06 .04 -.06 -.15 .08 .36* -.12 .42** 14. TEIQue-SC 4.97 0.83 .11 -.01 -.04 .23 .34* .09 .46** .47** .43** .22 .69** .51** - 15. TEIQue-E 5.09 0.74 .51** .54** .18 .32* .28 .16 .28 .31* .25 .18 .41* .76** .36* .32 16. TEIQue-S 4.96 0.77 .39* .08 .37* .09 .01 .12 .06 -.23 -.04 .39* .43** -.10 -.02 .21 - .09 .28 .30 - .30 - .32* .38* .26 - .26 .56** - - _____________________________________________________________________________________________ Note: Grit-S = Short Grit Scale, PE = perseverance of effort, CI = Consistency of Interest; SRIS = Self Reflection and Insight, I = insight, N = need for reflection, E = Engage in self-reflection; CSE = Coping Self Efficacy Scale, P = use problem-focused coping, Stop = stop unpleasant emotions or thoughts, Support = get support from friends and family; TEIQueSF = Trait Emotional Intelligence Questionnaire Short-Form, WB = well-being, SC = self-control, E = emotionality, S = Sociability; *p < .05, two-tailed, **p < .001, two-tailed SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 42 Table 3 Pre and Post-SRIS Survey Results (N=41) _____________________________________________________________________________________ Variable Pre M Post SD M SD p _____________________________________________________________________________________ SRIS 85.32 1.52 88.05 1.55 0.009* SRIS-I 33.85 0.67 33.6 0.72 0.676 SRIS-N 26.54 0.70 27.44 0.71 0.094 SRIS-E 24.93 0.89 27.02 0.80 <.001* _____________________________________________________________________________________ SRIS = Self Reflection and Insight, I = insight, N = need for reflection, E = Engage in self-reflection, *p < .05, two-tailed SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 43 Table 4 Multivariable Linear Regression Predictors of SRIS (Adjusted R2 = .253) ____________________________________________________________________________________ Independent Variable t p _____________________________________________________________________________________ TEIQue-E .478 3.46 .001 Grit PE .183 1.33 .193 _____________________________________________________________________________________ Note: TEIQue E = Trait Emotional Intelligence Questionnaire, E = emotionality, Grit PE = Perseverance of Effort Subscale; SRIS = Self Reflection and Insight Scale SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 44 Appendix A Self-Reflection and Insight Pre-Survey IFC You were selected as a possible participant in this study because you are a student enrolled in Diagnosis and Management of Neurological Conditions (DPT 745) at Wingate Universitys Doctor of Physical Therapy Program. Your participation in this research study is voluntary. If you choose to participate, then you will be one of approximately 44 subjects participating in this study. Why is this study being done? This study is intended to investigate self-reflection and insight abilities in DPT students during a semester of intentional teaching methods to foster clinical reasoning. 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: Complete an electronic pre-semester survey consisting of approximately 100 questions Participate and complete required assignments as part of DPT 745 to include lab practicals and guided self-reflection narratives. Complete an electronic post-semseter survey of approximately 20 questions How long will I be in the research study? Participation will take a total of about 8 weeks, the duration of DPT 745. Are there any potential risks or discomforts that I can expect from this study? Participants may experience mild psychological discomfort when completing the electronic surveys as questions will ask about ability to deal with difficult situations. Are there any potential benefits if I participate? You will not directly benefit from your participation in the research. The results of the research may allow self-reflection and insight to be measured in SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 45 physical therapy students and allow educators to provide intentional teaching methods to target this skill for improvement in clinical reasoning ability prior to clinical education. What other choices do I have if I choose not to participate? If you choose not to participate, you will receive the same interventions as students who participate; there are no other options. All educational interventions will be provided to all students regardless of participation in the study as part of the normal coursework of DPT 745. The investigators will not be able to identify who participates in the study as each participant will create a unique personal identifier and therefore has no effect on course grade. Will I be paid for participating? You will not be paid for participating in this study. Will information about me and my participation be kept confidential? Any information that is obtained in connection with this study and that can identify you will remain confidential. Your identifiable information will be disclosed only with your permission or as required by law. There is a possibility that de-identified data from this study may be shared with the research community at-large to advance science and health. De-identified means that any codes and personal information that could identify you will be removed before files are shared. Confidentiality will be maintained by means of each participant will create their own unique identification code. All data will be collected via Qualtrics electronic survey then exported to an Excel spreadsheet that will be kept on a password protected SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 46 computer. Only the members of the research team will have access to the de-identified data. Despite these measures, we cannot guarantee anonymity of your personal data. 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 questions 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: Sara Scholtes, PT, DPT, PhD, (317) 788 3315 or scholtess@uindy.edu or Becky Bliss, PT, DPT, (910) 644 4898 or r.bliss@wingate.edu University of Indianapolis Office of Human Research Protections Program (OHRPP): 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 UIndy OHRPP by phone: (317) 781-5774 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 47 or (800) 232-8634 x5774; by email: hrpp@uindy.edu; by mail: 1400 E. Hanna Avenue, Health Pavilion, Indianapolis, IN 46227. Electronic consent will be obtained via Qualtrics online survey. If you consent to participate in this study, then you affirm that you satisfy inclusion criteria and your consent is voluntary. To indicate your voluntary consent and proceed with the questionnaire, select one of the following options: o o I voluntary consent to participate in the study I do NOT consent to participate in the study ID Block ID1 What is the first initial of your mother's FIRST name? o o o o o o o o o o o o A B C D E F G H I J K L SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o o o o o o o o o o M N O P Q R S T U V W X Y Z 48 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS ID2 What is the first initial of your mother's LAST name? o o o o o o o o o o o o o o o o o o o o A B C D E F G H I J K L M N O P Q R S T 49 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o o U V W X Y Z ID3 What is the last 4 digits of your phone number? ________________________________________________________________ Demographic Block D1 What is your age? o o o o o 20-25 26-30 31-35 36-40 40+ 50 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS D2 What is your gender? o o o Male Female Prefer not to answer D3 Were you a collegiate athlete? o o Yes No D4 Did you have a previous career prior beginning your Doctor of Physical Therapy studies? o o Yes No SRIS Block SRIS1 I dont often think about my thoughts o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 51 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS2 I am not really interested in analyzing my behaviour o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS3 I am usually aware of my thoughts o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 52 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS4 I'm often confused about the way that I really feel about things o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS5 It is important for me to evaluate the things that I do o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 53 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS6 I usually have a very clear idea about why I've behaved in a certain way o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS7 I am very interested in examining what I think about o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 54 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS8 I rarely spend time in self-reflection o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS9 I'm often aware that I'm having a feeling, but I often don't quite know what it is o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 55 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS10 I frequently examine my feelings o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS11 My behaviour often puzzles me o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 56 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS12 It is important to me to try to understand what my feelings mean o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS13 I don't really think about why I behave the way that I do o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS14 Thinking about my thoughts makes me more confused o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 57 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS15 I have a definite need to understand the way that my mind works o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS16 I frequently take time to reflect on my thoughts o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 58 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS17 Often I find it difficult to make sense of the way I feel about things o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS18 It is important to me to be able to understand how my thoughts arise o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly 59 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS SRIS19 I often think about the way I feel about things o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly SRIS20 I usually know why I feel the way I do o o o o o o Disagree Strongly Disagree Disagree Slightly Agree Slightly Agree Agree Strongly Grit Block 60 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS G1 New ideas and projects sometimes distract me from previous ones. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all G2 Setbacks don't discourage me. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all G3 I have been obsessed with a certain idea or project for a short time but later lost interest. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all 61 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS G4 I am a hard worker. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all G5 I often set a goal but later choose to pursue a different one. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all G6 I have difficulty maintaining my focus on projects that take more than a few months to complete. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all 62 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 63 G7 I finish whatever I begin. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all G8 I am diligent. o o o o o Very much like me Mostly like me Somewhat like me Not much like me Not like me at all Coping Self-Efficacy Block CSE1 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Keep from getting down in the dumps. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 64 CSE2 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Talk positively to yourself. CSE3 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Sort out what can be changed, and what can not be changed. CSE4 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Get emotional support from friends and family. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 65 CSE5 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Find solutions to your most difficult problems. CSE6 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Break an upsetting problem down into smaller parts. CSE7 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Leave options open when things get stressful. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 66 CSE8 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Make a plan of action and follow it when confronted with a problem. CSE9 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Develop new hobbies or recreations. CSE10 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Take your mind off unpleasant thoughts. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 67 CSE11 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Look for something good in a negative situation. CSE12 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Keep from feeling sad. CSE13 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 See things from the other person's point of view during a heated argument. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 68 CSE14 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Try other solutions to your problems if your first solutions don't work. CSE15 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Stop yourself from being upset by unpleasant thoughts. CSE16 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Make new friends. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 69 CSE17 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Get friends to help you with the things you need. CSE18 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Do something positive for yourself when you are feeling discouraged. CSE19 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Make unpleasant thoughts go away. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 70 CSE20 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Think about one part of the problem at a time. CSE21 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Visualize a pleasant activity or place. CSE22 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Keep yourself from feeling lonely. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 71 CSE23 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Pray or meditate. CSE24 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 1 2 3 4 5 6 Certain can do 7 8 9 10 Get emotional support from community organizations or resources. CSE25 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Stand your ground and fight for what you want. 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS 72 CSE26 When things aren't going well for you, or when you're having problems, how confident or certain are you that you can do the following: Cannot do at all Moderately certain can do 0 Resist the impulse to act hastily when under pressure. Emotional Intelligence Block EI1 Expressing my emotions with words is not a problem for me. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree 1 2 3 4 5 6 Certain can do 7 8 9 10 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS EI2 I often find it difficult to see things from another person's viewpoint. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI3 On the whole, I'm a highly motivated person. o o o o o o o Completely Agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI4 I usually find it difficult to regulate my emotions. o o o o Completely agree Agree Somewhat agree Neither agree nor disagree 73 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o Somewhat disagree Disagree Completely disagree EI5 I generally don't find life enjoyable. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI6 I can deal effectively with people. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI7 I tend to change my mind frequently. o Completely agree 74 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o o Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI8 Many times, I can't figure out what emotion I'm feeling. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI9 I feel that I have a number of good qualities. o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree 75 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o Completely disagree EI10 I often find it difficult to stand up for my rights. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI11 I'm usually able to influence the way other people feel. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI12 On the whole, I have a gloomy perspective on most things. o o o Completely agree Agree Somewhat agree 76 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI13 Those close to me often complain that I don't treat them right. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI14 I often find it difficult to adjust my life according to circumstances. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI15 On the whole, I'm able to deal with stress. 77 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI16 I often find it difficult to show my affection to those close to me. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI17 I'm normally able to "get into someone's shoes" and experience their emotions. o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree 78 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o Disagree Completely disagree EI18 I normally find it difficult to keep myself motivated. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI19 I'm usually able to find ways to control my emotions when I want to. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI20 On the whole, I'm pleased with my life. o o Completely agree Agree 79 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI21 I would describe myself as a good negotiator. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI22 I tend to get involved in things I later wish I could get out of. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree 80 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS EI23 I often pause and think about my feelings. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI24 I believe I'm full of personal strengths. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI25 I tend to "back down" even if I know I'm right. o o o o Completely agree Agree Somewhat agree Neither agree nor disagree 81 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o Somewhat disagree Disagree Completely disagree EI26 I don't seem to have any power at all over other people's feelings. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI27 I generally believe that things will work out fine in my life. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI28 I find it difficult to bond well even with those close to me. o Completely agree 82 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o o o o o o Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI29 Generally, I'm able to adapt to new environments. o o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree Completely disagree EI30 Others admire me for being relaxed. o o o o o o Completely agree Agree Somewhat agree Neither agree nor disagree Somewhat disagree Disagree 83 SELF-REFLECTION IN PHYSICAL THERAPY STUDENTS o Completely disagree 84  ...

... USE OF A NOVEL COLLABORATIVE MEDIA TECHNOLOGY TO PROMOTE KNOWLEDGE TRANSLATION IN ONLINE CONTINUING EDUCATION FOR PEDIATRIC PHYSICAL THERAPISTS 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: Danielle Moeske Bellows, PT, DHSc, PCS Copyright March 27, 2018 By: Danielle Moeske Bellows, PT, DHSc, PCS All rights reserved Approved by: Kathryn Martin, PT, DHSc Committee Chair Lisa Borrero, PhD Committee Member Sandra Saavedra, PT, PhD Committee Member Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program University of Indianapolis Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis NOVEL TECHNOLOGY FOR ONLINE LEARNING Use of a Novel Collaborative Media Technology to Promote Knowledge Translation in Online Continuing Education for Pediatric Physical Therapists Danielle Moeske Bellows, PT, DHSc, PCS University of Indianapolis 1 NOVEL TECHNOLOGY FOR ONLINE LEARNING Abstract Background: Online continuing education is a convenient and cost-effective option for professional development with the potential to speed the translation of evidence to clinical practice. Integrating innovative technology with online course design that reflects best practices in adult education and knowledge translation is one promising approach to meeting this need. Understanding how available technology and course design interact to promote learning in an online environment and what impact these factors have on therapists intention to implement new skills in clinical practice will better inform online continuing education design. Purpose: The purpose of this grounded theory study was to understand the processes that pediatric physical therapists use to learn a hands-on clinical assessment in a selfpaced asynchronous online continuing education course that utilized an innovative interactive media player. Method: Data was concurrently collected and analyzed using a constructivist grounded theory approach informed by the Diffusion of Innovations Theory. Nineteen pediatric physical therapists from three organizations who completed an online course on the Segmental Assessment of Trunk Control were recruited using theoretical sampling. Two researchers analyzed transcripts of semi-structured individual interviews and open responses to learning module prompts using constant comparative analysis and a consensus coding process consistent with grounded theory. Results: The online course design provoked cognitive dissonance for learners when they attempted to assimilate new information on posture control assessment and treatment with their clinical experience. Three approaches to reducing this dissonance emerged: accommodating new concepts without practice change, waiting for others to provide solutions to implementation challenges, and experimenting or adapting information for practice change. The development and resolution of cognitive dissonance was an iterative process embedded within participants reflective clinical practice. Individual clinicians often demonstrated more than one approach to resolving the dissonance at any given point in time. Conclusion: Designing online learning experiences that provoke cognitive dissonance using innovative technology may be effective in enhancing clinicians awareness of gaps in knowledge and practice, confidence in trialing new practice behavior, and motivation to engage in the sustained effort necessary for translating evidence to real-world clinical settings. Instructional designers must also recognize the personal and organizational factors that color the contextual lens through which healthcare professionals consider how and when to use information learned online in clinical practice. Key words: online education, continuing professional development, knowledge translation, cognitive affective processes. 2 NOVEL TECHNOLOGY FOR ONLINE LEARNING Acknowledgements Many people have contributed to the successful completion of this project. I will be eternally grateful to my committee chair, Dr. Kathryn Martin, for her supportive leadership, guidance, ability to demolish all obstacles, and humor throughout this study. I am thankful for Dr. Lisa Borrero, who introduced me to qualitative research, asked insightful questions throughout the project, and kept me from going down a rabbit hole during data analysis. Thank you also to Dr. Larissa Schroeder for agreeing to be the second coder in this study and for introducing me to the TrACE media player. I would also like to thank Dr. Sandra Saavedra for inviting me to join her DPT research class as an adjunct instructor 5 years ago and for being an ongoing mentor and friend in the journey from clinical practice to academic teaching and research. I would be remiss if I did not also recognize Maryleen Jones who has travelled with me on this DHSc journey. Mary is always been willing to offer honest, insightful feedback and support, and I am honored to have had the opportunity to learn with her in this program. Lastly, I am grateful to Dr. Jennifer Fogo and the entire University of Indianapolis faculty who encouraged me to make the DHSc program work for my career goals in an area of scholarship few faculty were familiar with. The flexibility to adapt my program of study to pursue research in knowledge translation and implementation science has been invaluable. I would also like to thank the participants in this study. They not only volunteered to complete a pilot online continuing education course using unfamiliar technology while continuing to work full time in busy school and clinic settings, but they also graciously offered their time and honest reflections on their experiences during the interviews. I am grateful for your dedication to furthering our understanding of segmental assessment and treatment concepts and your willingness to give back to pediatric therapy by participating in research. 3 NOVEL TECHNOLOGY FOR ONLINE LEARNING Finally, I would like to thank my family Rick, Elanna, and Jacob Bellows. I never cease to be amazed by my husband Ricks ability to believe in me unconditionally, and he has taken on the lions share of household management while I was engaged in this research. My family is my top priority, and I am very grateful for their willingness to support me on this journey with humor, love, and grace. This project was supported by the National Science Foundation Cyberlearning Grant #1318345 and grants from the University of Hartford Institute for Translational Research. 4 NOVEL TECHNOLOGY FOR ONLINE LEARNING Table of Contents Abstract 2 Acknowledgements 5 Table of Contents 6 Chapter 1: Introduction 8 Chapter 2: Literature Review 11 Health Professionals as Learners 11 Current Challenges in Online Continuing Education and Research 13 Technology and Online Course Design 16 Online Training for Outcome Measures 18 Chapter 3: Method 20 Study Design 20 Informed Consent 22 Sampling 22 Procedures 24 Intervention 24 Online Course Design 25 Data Collection 27 Data Analysis 28 Chapter 4: Results 29 Participants 29 Learning a Clinical Skill Online with TrACE 30 5 NOVEL TECHNOLOGY FOR ONLINE LEARNING Cognitive Dissonance 31 Cognitive dissonance provoked by course design 34 Cognitive load, interaction, and attitudes toward online learning 36 Cognitive dissonance provoked by characteristics of the SATCo 38 Viewing Dissonance Through a Contextual Lens 41 Organizational Context 41 Personal Confidence 44 Resolving the Dissonance 45 Accommodating Information Without Practice Change 45 Waiting for Solutions to Implementation Challenges 46 Experimenting and Adapting Information for Practice Change 47 Chapter 5: Discussion and Conclusion 51 Research Question 1: Attitudes Toward Online Learning for Clinical Skills 51 Research Question 2: The Role of TrACE in Learning a Clinical Skill Online 52 Research Question 3: The Role of Asynchronous Interaction in TrACE 53 Research Question 4: Intention to Implement SATCo After Online Learning with TrACE 54 The Conceptual Lens and Practice Change 55 Cognitive-affective Processes in Knowledge Translation 56 Dissonance Resolution and Practice Change 58 Implications for Future Research 60 Limitations 61 Conclusions 61 References 63 6 NOVEL TECHNOLOGY FOR ONLINE LEARNING Table 1 71 Table 2 72 Figure 1 73 Figure 2 73 Figure 3 74 Appendix A 75 7 NOVEL TECHNOLOGY FOR ONLINE LEARNING Use of a Novel Collaborative Media Technology to Promote Knowledge Translation in Online Continuing Education for Pediatric Physical Therapists In the current healthcare marketplace, all health professionals are charged with providing cost-effective care utilizing the best available evidence.1 Rehabilitation therapists report that formal continuing education is the primary strategy they use to keep up with rapidly emerging evidence and best practice recommendations.2-5 Online continuing education promises to provide convenient, flexible, and cost-effective alternatives for busy physical therapists (PTs) that are as effective as face-to-face conferences.6-9 However, current models of both traditional and online continuing education are not effective for changing clinical practice.10-16 To achieve higher level learning outcomes needed to change clinical practice, online courses must incorporate educational strategies that facilitate collaborative social learning as well as simulated skills practice and guided reflection on complex, real-world clinical cases.17-21 Multimedia technology has the potential to facilitate these learning outcomes. However, multimedia strategies in most courses are utilized primarily to transmit didactic knowledge to participants, current media players are physically separated from the discussion forums that learners must use to engage with instructors or each other, and video viewing is a passive activity.17,22,23 As a result, the potential for technology to link multimedia content to authentic skills practice and collaborative discussion has not been realized. Several authors have studied the impact of current technology on collaborative learning in online continuing education using asynchronous discussion of video case examples within platforms including wikis, blogs, moderated discussion boards, or virtual reality systems.12,17,21,24-27 Even though this technology links videos to interactive discussion, current media players are physically separated from the discussion forums that learners must use to 8 NOVEL TECHNOLOGY FOR ONLINE LEARNING engage with instructors or each other, and video viewing is often a passive activity.23 The lack of a direct physical linkage between visual media and discussion platforms limits the effectiveness of both strategies because it requires busy professionals to shuttle back and forth between multiple areas of the online environment.23 Furthermore, learner use of online discussion forums is often limited which diminishes the effectiveness of this strategy for both collaborative learning and individual reflection on clinical cases.12,21,28 There is a need for integrated media technology in online course design that better supports the unique learning needs of health professionals for asynchronous online discussion, collaborative learning, and reflection in continuing education. The Transformative Anchored Collaboration Environment (TrACE) is a novel spatial-temporal anchored media-player that has been used to support both synchronous and asynchronous collaborative discussion in undergraduate science and math education.23 However, neither TrACE nor any similar anchored media system has been utilized to teach clinical skills in online continuing education. Furthermore, no studies were found that investigated the interaction between the available technology, course design, and collaborative discussion among working health professionals who are learning a clinical skill online. Educators need to learn more about how pediatric PTs and other health professionals engage in learning in multimedia online education environments so that online courses can be designed to maximize the effectiveness of this active learning strategy. We also need to understand how the available technology and the course design interact to facilitate the selfassessment, reflection, and social learning processes that support practice change. Finally, to design online education that facilitates improved patient outcomes, we need to understand how 9 NOVEL TECHNOLOGY FOR ONLINE LEARNING health professionals view technology-mediated online collaborative discussion relative to their intention to implement skills learned online in clinical practice. Purpose The purpose of this grounded theory study was to understand the processes that pediatric physical therapists use to learn a hands-on clinical assessment in a self-paced asynchronous online continuing education course that utilized TrACE to facilitate individual reflection and collaborative asynchronous discussion of video case examples. Learning a clinical assessment was defined as confidence with identifying tester errors and patient compensations for inadequate trunk postural control when scoring a video example of the Segmental Assessment of Trunk Control (SATCo) within TrACE. Specifically, the following research questions were addressed: 1. How do pediatric physical therapists describe their attitudes about learning a hands-on skill online after completing the pilot Introduction to SATCo course? 2. How do pediatric physical therapists conceptualize the role of the spatial-temporal anchored media system and the course design in learning to identify postural control compensations and tester errors for the Segmental Assessment of Trunk Control (SATCo)? 3. What role does interacting asynchronously with other participants within the spatial-temporal anchored media system play when learning a clinical assessment? 4. How do pediatric physical therapists describe their intention to implement or not to implement the SATCo in clinical practice after using the spatial-temporal anchored media system in an online education course? 10 NOVEL TECHNOLOGY FOR ONLINE LEARNING Literature Review Online continuing education is becoming increasingly popular among health professionals and their employers because it allows a convenient and flexible balance between personal and professional responsibilities.29 However, the quality of these courses varies widely,8,30 and their ability to facilitate learning that results in practice change and improved patient outcomes is unknown.8,22,24,27,31,32 This section will review current challenges in online continuing education including the unique needs of health professionals as learners. The interaction of media technology and course design in programs that aim to teach clinical skills to health professionals and to change practice behavior will also be discussed. The benefits of online education programs for health professional learners and their employers include reduced cost of courses, minimal travel, less time away from work, and flexibility in scheduling.22 For researchers and educators, online learning allows the dissemination of up-to-date information quickly over a wide geographic area.17,30 With constantly improving technology available, educators have the potential to design highly interactive courses that are specifically tailored to health professionals learning needs and practice contexts more easily than in traditional face-to-face workshop settings.17,22,30,33,34 In addition, online education may facilitate the development of ongoing communities of practice through peer to peer discussion and support.33,35 However, the potential for online course design to support both continuing clinical competency and the translation of new evidence into practice has not been optimized.17,22 Health Professionals as Learners Adult learners are self-directed and appreciate self-paced learning environments.10,34 They desire high quality educational programming that incorporates timely, practical knowledge 11 NOVEL TECHNOLOGY FOR ONLINE LEARNING which is relevant to the complexity of real-world settings.10,27,34,36 Even though health professionals are adult learners, their needs are unique because learning clinical skills also requires actual or simulated skills practice.19 In order to address these higher level competencies, the course design must provide opportunities for health professionals to demonstrate procedural and process type knowledge with simulated practice and feedback in an authentic context.17,19 Research is lacking regarding which elements of course design best support learning clinical skills online.8,37,38 Finally, integrating knowledge translation principles in course design is important to facilitate practice change. Knowledge translation is the timely and effective integration of current evidence into routine clinical practice by health professionals in order to optimize healthcare outcomes for patients and maximize efficiency within the healthcare system.39 Several authors have proposed key design principles essential for achieving the higher level learning needed to change clinical practice based on theories of adult education and knowledge translation.19-21,33,40 A foundational principle is that the objectives of online continuing education courses for health professionals must extend beyond declarative knowledge.19,34,41 In addition, activities designed to teach clinical skills must include simulated trial and error practice linked to competency assessment.17,26 Multimedia and other technology-based strategies must incorporate neuroscience principles that optimize cognitive load and facilitate social construction of knowledge in a non-linear, collaborative environment that reflects the complexity of real-world clinical practice.17,19,42,43 Active learning strategies, ongoing self-assessment, guided reflection, opportunities for critical thinking about complex cases, and formative feedback from instructors or peers are also important.17-19,33,34,41,44,45 In particular, opportunities to problem-solve solutions to complex cases with peers have been found to improve physical therapists confidence for 12 NOVEL TECHNOLOGY FOR ONLINE LEARNING initiating practice change46,47 and to help health professionals identify the gap between current and recommended practice.3,33,47-49 Even though the most effective combination of strategies is currently unknown, research on knowledge translation in rehabilitation suggests that educational programs that incorporate multifaceted knowledge translation and interactive learning strategies are more effective than lecture-based or other passive learning approaches.3,10,14,50,51 Current Challenges in Online Continuing Education and Research Despite expert recommendations to decrease reliance on didactic lectures in continuing education,11,22,40,41 online course design has not kept pace with best practice recommendations for education. In fact, the same instructor-driven focus found in traditional face-to-face courses prevails online.8,17,24,43,52 The most common multimedia strategy utilized is the narrated lecture with audio or video slide presentations8,20,22 with asynchronous discussion of video content emerging as the most utilized active learning strategy.21,27 Participants in online courses report frustration with the paucity of ideas and conversation in discussion forums for both formal and informal learning environments.15 Most of the interaction that does occur in these discussion forums is between instructor and participant rather than as a collaborative knowledge creation process among learners.44 Some participants have reported concerns about confidentiality or how their ideas are received by other participants in online discussion boards.38,53 This lack of a trusting and supportive collaborative learning community in some online continuing education programs has been proposed as one reason that up to half of all health professional learners fail to complete these courses.8,20 Current research on the effectiveness of online continuing education also reflects the didactic focus of most online continuing education. Changes in knowledge, intention to implement new knowledge, confidence in performing clinical skills, and self-reported practice 13 NOVEL TECHNOLOGY FOR ONLINE LEARNING have been studied primarily using quantitative methods.15,17,20,24,54 Other quantitative outcomes studied include learner satisfaction with the online environment,17,20,24 frequency of participant access of online resources,8,37 and frequency of participation in online discussions.44 As a result, there is little evidence regarding which online course design factors or combination of factors are effective in facilitating critical thinking and clinical skill competence needed for practice change32,55or how the interaction between available multimedia technology and course design influences the learning process or intention to change practice behavior. The few qualitative studies have focused on barriers to and facilitators of learning in online educational design 38,56 or learner perceptions of online discussion forums.53 MacNeill et al53 reported improved understanding of interprofessional roles for 15 multidisciplinary health professionals who participated in a 12-week collaborative online course on either traumatic brain injury or diabetes. These health professionals reported challenges with online group processes but appreciated the flexibility of the online environment, immediate feedback from other learners, and an enriched learning experience. In contrast, other researchers have reported that physicians who were motivated to seek online continuing medical education primarily due to workload and personal constraints demonstrated a superficial approach to learning.57 Another commonly reported motivation for engaging in online discussion-based learning programs is networking with other professionals to solve common clinical problems.38 However, whereas some online learners appreciate the anonymity of e-learning, others report feeling exposed, vulnerable, and unable to risk contributing to online discussions.28,44,53 Learner frustration with the paucity of knowledge sharing and conversation in online courses limits the effectiveness of this strategy for both professional networking and knowledge construction.12,28,38 Even though social learning is viewed as paramount for knowledge translation in continuing 14 NOVEL TECHNOLOGY FOR ONLINE LEARNING education, no studies were found on the nature or role of these discussion activities in effective online collaborative learning. Instead, the few studies available focused on the role of the facilitator in promoting online discussions.24,44 Research is also lacking regarding the impact of online continuing education on patient outcomes.8,17,20 There is some evidence that online continuing education programs can be designed using multifaceted educational and knowledge translation strategies informed by adult learning and behavior change theory to facilitate practice change.17,24,26,58 Pullen 24 found that incorporating immediate and asynchronous feedback, opportunities to respond to clinical questions, and a point-of-care clinical tool facilitated increased knowledge and self-reported practice change for 300 healthcare professionals who participated in asynchronous online continuing medical education courses in Australia. Pediatric physical therapists in the United States reported improved knowledge and skill in selecting, administering, interpreting, and sharing standardized tests and measures after participating in a hybrid education experience including a two day faceto-face workshop followed by a 16 week discussion-based online program.58 Renal nurses reported increased confidence in performing button-hole cannulation skills following a selfpaced asynchronous online learning module using an interactive ultrasound and cannulation training software application.26 No studies were found that investigated the use of interactive media or other software applications for continuing education in rehabilitation. In addition, no studies were found that investigated the process by which physical therapists learn clinical skills in an entirely online educational program or the processes they used to determine how new knowledge and skills would be used in practice. 15 NOVEL TECHNOLOGY FOR ONLINE LEARNING Technology and Online Course Design Aside from streaming videos, the most common technology used to support online teaching and learning in healthcare is the threaded asynchronous discussion forum.15,17,38 Several authors have proposed that asynchronous discussion promotes collaborative learning, reflection, self-assessment, and social construction of knowledge.59,60 In order to achieve the higher level learning needed for health professionals to implement learning in practice, the structure of the discussion environment must support a variety of purposes including knowledge comprehension, critique, construction, synthesis, and sharing.59 Asynchronous discussion provides increased time for learners to process and reflect on new knowledge before responding as well as to revisit content, questions, and discussion over time.61-63 However, it is difficult to facilitate focused, interactive, and in-depth asynchronous discussion in traditional threaded forums because participants frequently focus on the most recent posts and subsequently respond with condensed expressions of their own ideas rather than attending to, and reflecting on, the ideas of others in order to apply and synthesize new information across threads.59 Furthermore, current media players for multimedia course content are physically separated from the discussion forums that learners must use to engage with each other.23 This lack of a direct physical linkage between visual media and discussion platforms limits the effectiveness of both strategies because it requires busy professionals to shuttle back and forth between multiple areas of the online environment.64 Several authors17,59,65-68 have attempted to integrate course design and media technology to reduce barriers to online discussion and better facilitate collaborative learning in distance education and flipped or hybrid classroom environments for undergraduate and graduate level programs. Strategies have included scaffolding participant discussion using pre-structured 16 NOVEL TECHNOLOGY FOR ONLINE LEARNING activities as constraints within the forum, using concept maps or tables to visually represent the relationships among key concepts in the discussion, and anchoring the discussion to specific places within text documents to focus the conversation.59 While each of these strategies has improved some aspects of discussion, none of them fully addresses the need for practicing healthcare professionals to engage in contextually relevant and complex case-based reasoning through both discussion and trial and error practice in order to learn clinical skills online. In contrast, the Transformative Anchored Collaboration Environment (TrACE) is a novel spatial-temporal anchored media-player that has been used to support both synchronous and asynchronous collaborative discussion in undergraduate education.23 The TrACE media player is designed to facilitate interaction and asynchronous collaboration around video content by allowing users to place an annotation and an anchored comment thread at any time and physical location in a video. The type and structure of each annotation can be customized to meet specific instructional goals that support knowledge translation including facilitating critical observational and reasoning skills, self-assessment, reflection, synthesis, and co-construction of knowledge through collaborative discussion. Learners can ask anchored questions that can be answered by other participants as well as the instructor, and the annotations may be made anonymously. Instructors may also insert special discussion type questions that automatically pause the video to allow free-text responses. As a result, TrACE is a promising interactive learning environment for health professionals to engage in individual skills practice and both individual and collaborative reflection, problem-solving, and other knowledge creation activities within an online continuing education course. However, no studies were found that utilized TrACE or any other anchored collaborative media environment in online continuing education for healthcare professionals. 17 NOVEL TECHNOLOGY FOR ONLINE LEARNING Online Training for Outcome Measures Research regarding online training of physical therapists for clinical skills such as administering and scoring an outcome measure is lacking. Only one study was found that describes a self-paced continuing education course for a pediatric outcome measure. Pediatric physical therapists were able to reliably score the Test of Infant Motor Performance (TIMP) after either attending a four-hour face-to-face workshop or completing a self-paced CD-ROM training program. Participants in the CD-ROM group were able to learn the test more quickly than those in the face-to-face group, and they were less lenient in their scoring. However, 40% of the pediatric PTs in both groups would have required further training to reach the desired reliability standard for scoring the TIMP. No other studies were found describing self-paced training for outcome measures in physical therapy in any format. However, developing online training for outcome measures is important to provide physical therapists with improved access to continuing education on for improved reliability of administration and scoring of these assessments as part of the delivery and reimbursement of quality patient care. One such outcome measure is the Segmental Assessment of Trunk Control (SATCo). The SATCo is a valid tool that provides a systematic way of assessing specific levels of trunk control for children with neuromotor disorders.69 Manual support is provided at seven segmental levels while maintaining both the pelvis and spine in neutral vertical alignment. Static, active, and reactive control are systematically assessed at each level. Accurate and reliable scoring depends on the ability of the clinician to identify both errors in testing and compensatory postural control strategies. Since the SATCo is currently the only measure which allows specific assessment of trunk control for children with moderate to severe motor impairments,69,70 it is important to provide 18 NOVEL TECHNOLOGY FOR ONLINE LEARNING training to researchers and pediatric therapists in a wide variety of geographic locations and practice settings as efficiently and effectively as possible. Therefore, an online or hybrid training program for SATCo is appropriate. Scoring for SATCo is specific and complicated which can be challenging for physical therapy students, pediatric PTs, and researchers who are trying to reliably implement this assessment tool even when provided with face to face instruction (Sandra Saavedra, PT, PhD, email communication, March 11, 2018). A hybrid course design integrating self-paced learning using the TrACE media player with face to face skills practice demonstrated improved competence and confidence with SATCo administration and scoring for physical therapist student researchers.71 Therefore, online course design that integrates cutting-edge media technology such as the TrACE media player may also facilitate the higher level of learning needed for pediatric PTs to implement SATCo in their clinical practice. However, online interactive training for SATCo does not currently exist. Furthermore, there is currently no literature describing how health professionals engage in collaborative learning in online training for outcome assessments, how effective this training is for teaching clinical skills to rehabilitation therapists, or whether therapists intend to implement information learned online in their own clinical practice following online training. In conclusion, current online course design in continuing education for health professionals does not support the kind of collaborative discussion, reflection, and higher-level learning needed to improve clinical practice and patient outcomes. Integrating novel technology such as the TrACE media player with course design that reflects best practices in adult education and knowledge translation is one promising approach to addressing this gap. Since research is lacking, it is important to learn more about how rehabilitation therapists engage in collaborative discussion in multimedia online education environments, how the available technology and the 19 NOVEL TECHNOLOGY FOR ONLINE LEARNING course design interact to promote higher level learning, and what impact these factors have on therapists intention to change their clinical practice. This study will explore how pediatric PTs learn a clinical skill in a collaborative online environment. The development of an initial theory of the processes that pediatric PTs use to decide whether or not to implement a hands-on clinical assessment learned in a self-paced, asynchronous online continuing education course will allow further exploration of the best ways to design and implement online continuing education courses to promote knowledge translation in pediatric physical therapy. Method This section will describe the rationale and methods for a qualitative research approach to the study of pediatric physical therapists intention to use information learned during an online continuing education course utilizing TrACE to facilitate collaborative asynchronous discussion of video case examples and open-ended narrative prompts to facilitate critical reflection on clinical practice change. It will provide a description of the participants and sampling method, the online continuing education intervention, data collection and analysis, and ethical issues for this constructivist grounded theory study which is part of a larger mixed methods study. Trustworthiness and the role of the researcher will also be discussed. Study Design Both collaborative online learning and the application of that learning to clinical practice are complex social phenomena.17,34,72 Therefore, research on how the available technology and the course design interact to facilitate the self-assessment, reflection, and social learning processes that support practice change must move beyond a focus on quantitative measures related to didactic knowledge, frequency of participation, and learner satisfaction. Instead, a process-oriented approach to understanding how health professionals interact with technology 20 NOVEL TECHNOLOGY FOR ONLINE LEARNING and each other in online continuing education is warranted. Qualitative methods provide an alternative approach to exploring ways that health professionals respond to didactic information and create their understanding of a new clinical assessment when engaged in an online education course using a novel spatial-temporal anchored media player to facilitate a discussion-based collaborative learning community. A constructivist grounded theory approach places the focus on the phenomenon being studied in a particular time, place, and situation73 so that data collection and analysis are interrelated concurrent processes.74 The analysis is grounded in the data through constant comparison of emerging categories until theoretical saturation is achieved. A grounded theory approach is appropriate in areas such as collaborative learning in online continuing education where there is little or no current theory.74 This approach considers the research situation and the subjectivity of the researcher part of the data and analysis process73 which is important in a study where the primary researcher is also involved in the online course design and delivery. Finally, studies on the process by which implementation of educational strategies facilitates the movement of research evidence into practice must be informed by knowledge translation theory.75 One commonly cited knowledge translation theory is Rogers Diffusion of Innovations Theory.76 This theory recognizes the complex nature of clinician behavior across a five-stage continuum from awareness to persuasion, decision, implementation, and finally adoption of innovative practices. A grounded theory approach informed by the Diffusion of Innovations Theory76,77 allowed a broad exploration of the impact of the anchored spatial-temporal media technology and online course design on discussion-based collaborative learning in a real-world continuing education context. 21 NOVEL TECHNOLOGY FOR ONLINE LEARNING Informed Consent Approval for this study was granted by the Human Subjects Committee (HSC) at the University of Hartford and a reliance agreement was established between them and the IRB at the University of Indianapolis in advance of participant recruitment. A packet with information on the study including the purpose, duration, inclusion and exclusion criteria, and consent form was provided to participants during the first week of each online course as part of the course design. Participants who agreed to participate in the study submitted the informed consent form online. The lead researcher also obtained verbal consent at the start of each semi-structured interview following the completion of the online course. The consent process for this study and for a concurrent mixed methods study related to the same online continuing education course were separate, and learners were able choose to participate or decline for each study. Sampling Recruitment and Enrollment. Participants for this study were recruited from two online course cohorts. The first cohort included 34 PTs who were employed by a large public school district in the northeast and who were enrolled in the pilot Introduction to SATCo online continuing education course between February and May 2017. The second online course cohort included 16 pediatric outpatient PTs employed by four childrens hospitals who were enrolled in a second pilot Introduction to SATCo online course between April and July 2017. Two of the hospitals were in northeastern states and two in Midwestern states. Due to the ongoing development of the online course, the pilot courses were offered to all the therapists free of charge. For the school therapists, the online course was a pre-requisite to a one-day in-person training (hybrid course) that was sponsored by their employer in May 2017. The hospital pediatric therapists participated only in the online course. 22 NOVEL TECHNOLOGY FOR ONLINE LEARNING The physical therapy supervisor for the school district assisted with providing staff a brochure that included information about the hybrid course and the possibility of participating in the two related research studies. This brochure detailed the course objectives, timeframe for course completion, information about the instructors, and the overall purpose of the study. Pediatric therapists in the online only course were recruited to participate in the second pilot online course through personal contacts of the primary researcher with leaders in each childrens hospital. They were provided with the same brochure as the school therapists. The primary researcher was one of the course designers and a course instructor for both the hybrid and online only courses. The sample for this study was a sub-sample of the convenience sample for a related mixed methods study on the use of the TrACE media player for online continuing education of health professionals. Participants in the sub-sample were selected from all pediatric practice settings in which course participants worked in order to maximize transferability of the research findings. These settings included early intervention, preschool, and K-12 school based physical therapy as well hospital based outpatient clinics in two of the four childrens hospitals. Purposive sampling is appropriate for grounded theory studies before theoretical sampling is possible.78 All learners in the online courses completed a brief informational questionnaire including demographic information and five questions about SATCo based on the five categories of Rogers Diffusion of Innovations theory: knowledge, persuasion, decision, implementation, and confirmation.76 Since the hybrid cohort completed the online course earlier than the hospital based PTs, information from this questionnaire was used to establish an initial maximum variation purposive sample78 of four PTs from the hybrid course. At least one PT was recruited from early intervention, pre-school, and school based practice settings. Theoretical sampling70 23 NOVEL TECHNOLOGY FOR ONLINE LEARNING of subsequent health professionals from both the hybrid and online only courses was used to identify participants who could best provide information related to emergent questions and categories developed from the initial interview codes and themes. Each PT was interviewed once, and theoretical saturation was established after 19 interviews. Open responses from the Blackboard modules were also analyzed for the 29 online learners who consented to participate in this study and data were triangulated with interview data to promote credibility. (See Figure 1 for online course and interview sampling flow.) Inclusion and Exclusion Criteria. Licensed physical therapists employed by the school district or one of the three childrens hospitals working with infants or children of any age who had not received prior hands-on training for SATCo and who completed the entire pilot online Introduction to SATCo course were included in the study. All three PTs from one organization in the online only cohort did not complete the full Introduction to SATCo course and were excluded from the study. In addition, all PTs from the hospital that had received prior hands-on training for SATCo were excluded because they were concurrently utilizing this outcome measure in clinical research. Procedures Intervention. The pilot online course consisted of ten self-paced modules that were completed asynchronously within a defined 12-week time-period. Interactive learning activities were designed to introduce pediatric PTs to the administration and scoring of the SATCo. Journal article readings, narrated video slide presentations, and video case examples were utilized in each module. Narrated video lectures and case examples were presented in the learning management system. In addition, PTs completed knowledge checks in the learning management system and TrACE media player for the modules. Open ended questions at the end 24 NOVEL TECHNOLOGY FOR ONLINE LEARNING of the modules on open and closed chains, SATCo administration and scoring, common tester errors, and compensatory strategies were utilized to prompt critical reflection on PTs current practice and attitudes toward using information learned in the online course. (See Table 1 for end of module open response prompts.) Activities in the TrACE media player were also designed to facilitate critical reflection and asynchronous discussion of key concepts throughout the course. The TrACE media player activities were designed to facilitate critical reflection along with interaction and asynchronous collaboration around video content by allowing users to overlay comments at any specific time and physical location in a video.23 To link a comment to a specific location in a video, PTs would click or tap at the desired location in the video to place an annotation and anchor their comment thread. In addition, the type and structure of each annotation prompt was customized to meet specific instructional goals. For example, multiple choice questions allowed for self-assessment of critical observational skills, whereas open-ended prompts were designed to promote critical reflection and clinical reasoning skills. Learners were also able to post a question about a specific time and place in the video that could be answered by other participants or the instructors. Finally, TrACE activities included options for anonymous posting to comment threads to facilitate increased participation in collaborative discussions by learners who feared sharing their questions or opinions publicly. Online course design. The online course was designed to incorporate multiple evidencebased strategies including the ability for participants to progress at their own rate,10,12,20,79 to navigate within current and earlier modules from the course in a non-linear manner,17,21,24,79 to participate in knowledge checks,17,43 to practice simulated skills,17,35,43 to reflect on clinical practice,18,53,80 to identify potential barriers and supports for implementing SATCo in practice,81,82 and to provide asynchronous two-way communication44,53 with peers and the 25 NOVEL TECHNOLOGY FOR ONLINE LEARNING instructors within the TrACE media player. Course participants also engaged in scoring the SATCo on video case examples of a typically developing infant and a child with cerebral palsy at both the beginning and end of the course. During the first course module, all participants completed a brief learner information questionnaire and the research study consent process, introduced themselves asynchronously to other participants, viewed a video demonstration on how to use the TrACE media player, and practiced making annotations within TrACE. They then read the published journal article on the administration and scoring of SATCo, reviewed the provided SATCo score form, and completed a pre-test by independently scoring two case videos in TrACE via private responses to the instructors. Reflective prompts designed to elicit clinical reasoning during scoring were incorporated in the pre-test. Participants were not able to progress in the online course until these elements had been completed. Each module unfolded sequentially when the requirements of the previous module had been completed. Participants could freely navigate through any module they were currently working on or had already completed, but could not skip ahead in the course. Modules two and three presented foundational concepts in the assessment of trunk control in children with neuromotor disability. Modules three through nine included video case examples in TrACE with asynchronous discussion prompts, multiple choice knowledge checks, and open-ended reflective prompts designed to develop therapists ability to identify common tester errors and compensatory strategies for inadequate trunk control during SATCo administration and scoring. Modules four, seven, and eight also included open response questions completed within the learning management system that prompted critical reflection on use of concepts from each module in clinical practice.(See Table 2.) Participants completed a 26 NOVEL TECHNOLOGY FOR ONLINE LEARNING post-test in module ten by scoring the same case example for SATCo that they scored in the first module pre-test. Therapists were provided with individual feedback regarding their performance on the post-test by an instructor. Therapists were also required to complete a post-course evaluation to receive continuing education credit for the pilot online course. Data Collection. Data collection occurred concurrently with mixed methods data collection for a related study on using the TrACE media player in online continuing education course design. Participation in both studies was voluntary and did not affect learners ability to complete the hybrid or online only educational activities or to receive continuing education credit. Data from the pre-test and post-test during the online course along with analysis of other quantitative and qualitative data available in TrACE will be analyzed as part of the concurrent mixed-methods study following the completion of this grounded theory study to improve trustworthiness. Data was collected and analyzed concurrently using constant comparative analysis consistent with a grounded theory approach.74 Each participant was interviewed by telephone once within the three months following completion of their Introduction to SATCo course at a mutually convenient time. Semi-structured individual interviews73 lasting 30-60 minutes focused on the participants experience in the online education course and intention to use the SATCo in clinical practice were conducted by the primary researcher using an interview guide. The initial interview guide (see Appendix A) was developed based on results of graduate student experiences with TrACE in flipped classroom models at the University of Hartford,71 a review of the literature on online continuing education in healthcare, and the Diffusion of Innovations Theory.76 The interview guide was adapted twice during data analysis based on concurrent conceptual and theoretical analysis. Interviews were recorded using freeconferencecall.com with 27 NOVEL TECHNOLOGY FOR ONLINE LEARNING a back-up recording on a mini digital recorder. Typed verbatim transcriptions were completed within two weeks of each interview by a transcription service and reviewed by the primary researcher for accuracy within two weeks. Data Analysis. The researchers employed multiple strategies throughout data collection and analysis to promote credibility, confirmability, and transferability in order to enhance the trustworthiness of the study. Audiotapes were reviewed within 48 hours of recording by the primary researcher and written memos on initial impressions and main concepts were created.74 The typed verbatim transcript of each interview was reviewed for accuracy within 14 days by the primary researcher and uploaded to the QSR NVivo 11 (QSR International Pty Ltd., Victoria, Australia) software package. Transcripts were read a second time as a whole to obtain an overall sense of the themes from each interview.74,83 On the third reading, line by line codes and analytical memos 74 were recorded by the primary researcher for each transcript in NVivo 11, and initial codes were developed using a constant comparative analysis process.73 Narrative data from the open response questions on tester errors and compensatory strategies were also analyzed for all study participants and these data were triangulated with the interview data to promote credibility. Next, a second researcher with experience in instructional design and qualitative analysis who was not affiliated with the online continuing education courses independently coded the initial data to enhance credibility of the findings.84 The primary and second researchers used a consensus decision-making process to determine the initial codes and subsequent focused codes. The researchers met several times during the course of analysis to refine emerging themes and categories in order to enhance credibility and confirmability through analyst triangulation85 and to facilitate reflexivity through inclusion of researchers from multiple disciplines.73,86 28 NOVEL TECHNOLOGY FOR ONLINE LEARNING Conceptual and theoretical memo writing was utilized throughout the data analysis process to explore relationships among categories, develop the emerging theory, and support ongoing theoretical sampling.73,83 Theoretical sampling continued with concurrent data analysis until saturation of the categories was reached and a central code was established.87 Both researchers maintained an audit trail including detailed descriptions of the initial and focused coding as well as the iterative theoretical sampling process to promote confirmability.83,84 Member checking of the analysis was conducted with participants by email after the theoretical codes had been developed in order to ensure that the findings were credible and reflected a reasonable account of participants experiences.84,87 The inclusion of PTs with varying levels of clinical and online learning experience who were working in different pediatric practice settings through the theoretical sampling process promotes transferability of the theory.83 Since the primary researcher was also involved with the development and delivery of the online education course, reflexive journaling was used throughout data collection and analysis to identify and address potential bias for improved confirmability of the analysis and trustworthiness of the emerging theory.87,88 Results Participants All of the hospital therapists and 20 of the 34 school-based therapists who were eligible consented to participate in this study. Nineteen pediatric physical therapists were identified through theoretical sampling as described above. Years of pediatric experience ranged from 1 to 42 with a mean of 17 years for study participants and 18 years overall. Seventy-four percent of the online participants and the study participant group had completed online education activities prior to the Introduction to SATCo course. Therapists self-rated confidence in online learning 29 NOVEL TECHNOLOGY FOR ONLINE LEARNING prior to the SATCo course ranged from 5 to 10 on a 10-point ordinal scale for study participants and 4 to 10 overall with a mean confidence rating of 8 for both groups. Study participants were evenly distributed among pediatric practice settings. (See Table 2 for participant characteristics) Learning a clinical skill online with TrACE The online course design was instrumental in provoking cognitive dissonance for learners in both the hybrid and online only courses. The SATCo course content encouraged participants to reexamine their assumptions regarding how posture control develops and can be trained in children with neuromotor impairment. As a result, some PTs were required to think about posture control assessment and treatment in a new way. They were required to reorganize and re-conceptualize prior understanding of trunk control and to consider implementing this new approach in practice. The clinical reasoning questions and open-ended prompts in the TrACE video cases, and the reflective prompts at the end of the Blackboard modules, provoked health professionals cognitive dissonance about using the SATCo and related treatment concepts in practice. As a result, therapists accessed, identified, reflected on, and compared prior knowledge and practice to new concepts within the context of personal and organizational factors during and after the online course. Our grounded theory analysis uncovered three approaches that participants used to reduce cognitive dissonance: accommodating new concepts without practice change, waiting for others to provide solutions to implementation challenges, and experimenting or adapting information for practice change. The development and resolution of cognitive dissonance was an iterative process embedded within participants reflective clinical practice. Individual clinicians often demonstrated more than one approach to resolving the dissonance at any given point in time. (See Figure 2) 30 NOVEL TECHNOLOGY FOR ONLINE LEARNING Cognitive Dissonance According to Festingers theory of cognitive dissonance,89 individuals experience psychological tension or discomfort when their beliefs or attitudes are inconsistent with their actions. This discrepancy must be resolved to restore consistency among the individuals cognitions and behavior. Participants experienced cognitive dissonance in the online course when they attempted to reason through video case examples and critical reflection activities while considering two conflicting beliefs about the assessment and treatment of postural control in children. New information was assimilated with prior knowledge grounded in clinical experience. Most participants were motivated to contemplate incorporating the segmental approach in their practice because their clinical experiences with the current assessment and treatment approach was not optimal. All therapists had experienced difficulty with assessing and treating children with moderate to severe deficits in head and trunk control prior to participating in the online course. After learning about the SATCo, they believed that the segmental approach had the potential to help solve this persistent problem. When reflecting on their current practice during the course, PTs shared their surprise in finding examples from their current caseload where children demonstrated a new concept that they had not recognized before such as the use of closed chain compensatory strategies for inadequate trunk control. So, I think particularly interesting for me in the course was some of the compensatory strategies that maybe I dont think about. So, stuff like where their arms are positioned, and whether or not theyre positioned, like, touching another body part or if theyre free. And even just the toy to mouth with their hands. Those kinds of things I dont think I was thinking of quite as in depth before the course. And so, I think that I willIm thinking a little bit differently when Im watching kids, and Im trying to support them about what theyre maybe doing to maintain that posture that maybe I didnt think of as a compensatory strategy before the course. (P12) 31 NOVEL TECHNOLOGY FOR ONLINE LEARNING Therapists were also surprised by children they were assessing or treating who did not have as much trunk control as they had previously given them credit for. Some PTs were surprised by the difference in function that was achieved when they tried providing increased segmental support to a child. These experiences contrasted starkly with therapists prior expectations of how trunk control could be improved through treatment, and this discrepancy heightened PTs feeling of cognitive dissonance. And previously, when Ive been working with [this child], we had still been working on sitting. And before, mom would be happy when wed be able to get him to sit independently for a couple of seconds statically, but thisIve noticed he really doesnt have control from his axilla all the way down. So even though I wasnt providing him with support and it looked like he was sitting independently, he truly still doesnt have the control in those areas. (P18) Participants wrestled with giving up their prior strategy of fading or removing support when working on upright posture rather than supporting a child up to the segmental level where they were learning trunk control. Prior to the online course, diminishing the amount of support was viewed as a way of demonstrating gains in function and posture control by PTs in all practice settings. In contrast, the segmental approach focuses on optimizing alignment and providing adequate support for learning trunk control at the segmental level where a child loses static, active, or reactive control. Some PTs experienced dissonance when trying to fit this new approach into a current treatment philosophy focused on the child demonstrating progress in functional skills by minimizing supports and using compensatory strategies to maximize function. So if I set a kid up that the staff is going to do a gait training with them, I might have it set to be a little bit higher because that way I know that they wont worry about that child, you know, losing it. And they can go to adaptive P.E. class so they can do the work in the class. But then when I work with them, I might actually lower the prompt or take away a prompt because Im trying to get it where they have to work at it. But I want them 32 NOVEL TECHNOLOGY FOR ONLINE LEARNING to be able to do what they need to do with their supports. But then if I want them to get better [posture control], then during therapy I might change it up. (P03) And I think it just brings me back to, like I said, not overriding my concern for those compensations. I sometimes will. Im aware of them. I will document them. But Ill say, You know what? The kids got to be able to participate in circle time. And thats valuable at that point in time in his life So, they participate that day, but maybe the next day, a more difficult task, they wont be able to participate with. So, you just have to really be able to predict the outcome of ignoring those compensations. (P01) Early in the online course, some PTs assimilated information learned online by merging new information about segmental assessment with prevailing conceptual models of treatment for postural control deficits such as strengthening trunk muscles or working on shoulder and pelvic stability in prone and quadruped. Others debated the relevance of segmental concepts compared to current approaches to treatment for their children on their caseload. Now that Im learning how to assess trunk stability at different levels I can see where specifically a child is demonstrating weakness and work on those levels in order to decrease their compensatory strategies I will start to focus primarily on strengthening areas of weakness and much less on the child developing compensatory strategies. (P04) I guess it would be advantageous for them to be working on gaining some trunk control with some support in the lower thoracic area. But I also think this is a kid who really needs a lot of time on strengthening abdominals in general, and then working on hands and knees and rocking to get pelvic and shoulder girdle stability. (P08) Gaining trunk control from therapeutic work in prone and quadruped has been a mainstream treatment philosophy in pediatric physical therapy for decades, and working on segmental control in upright postures was a novel idea for most participants. In addition, even though trunk strengthening and stabilization are important therapeutic goals for children with motor disability, they are not part of the segmental approach to gaining trunk control. PTs had difficulty reconciling this prevailing approach with the information they were learning online. 33 NOVEL TECHNOLOGY FOR ONLINE LEARNING Engaging in multiple case-based and reflective activities in the online course helped many PTs to move beyond these initial conceptions and to refine their understanding of how segmental assessment can inform trunk control interventions. Together with characteristics of the SATCo, the course design promoted cognitive dissonance in learners by continually engaging them in reflection regarding their current practice and the potential for practice change. Cognitive dissonance provoked by online course design. Active learning through video case examples in TrACE and the open-ended reflection questions at the end of each module encouraged PTs to make meaningful connections between the information they were learning online and their own clinical practice. This resulted in varying degrees of cognitive dissonance for most participants. An overview of the link between segmental assessment and treatment was provided in the online modules and TrACE activities, but the focus of the course was on administering, scoring, and interpreting SATCo. The reflective questions at the end of each module also allowed brief asynchronous exchanges between each participant and the instructors. Instructors were able to pose additional questions to participants in order to facilitate deeper reflection and critical thinking and promote clearer identification of differences between participants current understanding or clinical practice and the course content. PTs were encouraged to reflect on how they might approach implementing SATCo and segmental concepts in their own practice and to consider what barriers to implementation they might encounter. Instructors provided feedback on learners questions about the course content, acknowledged challenges and successes with PTs attempts to trial information in their practice, and gently prompted further reflection to stimulate awareness of the gap between a participants prior mental models for posture control and segmental concepts when appropriate. Learners 34 NOVEL TECHNOLOGY FOR ONLINE LEARNING found these activities valuable in facilitating reflection and making their clinical reasoning more explicit as they moved through the online course modules. And that part of the open-ended questions where I was put on the spot to say what I thought. And I had to write it out. And so, theres that point of reflection where you have to articulate what your reasoning is. (P01) The TrACE activities provided learners with multiple opportunities to practice SATCo skills in video case examples and to reflect further on their clinical reasoning. Some questions required learners to submit scores for video SATCo tests on a typically developing infant or a child with cerebral palsy. Scoring was done through private replies to the instructors to allow each participant to practice scoring the test independently. Learners were also asked to identify and publicly comment on open and closed chain strategies, tester errors, and compensatory strategies that they observed in TrACE video cases during those course modules. Although these open-ended prompts were designed to facilitate discussion and peer feedback among course participants, this did not occur in either cohort during the online course due to the self-paced and asynchronous nature of the modules. However, these activities did promote cognitive dissonance in participants by forcing them to engage deeply with course material, requiring them to commit to their observations for the video cases, and encouraging them to explain their clinical reasoning. In addition to promoting cognitive dissonance, these activities helped learners synthesize information across modules in the course and gain confidence in their ability to complete specific skills related to SATCo administration and scoring. My favorite thing was the actual TrACE where you could actually see a real patient and actually be able to do some clinical thinking, which is the first time Ive had to do that on an online course because its usually just a presentation and then you took a small test. This time you actually got to use your clinical thinking and look at the patient and be able to answer what you believed was going on. (P18) 35 NOVEL TECHNOLOGY FOR ONLINE LEARNING Well, that activity, you had to take everything that you had learned before and actually apply it. Rather than just learning individual pieces and making comments, that particular activity [open ended prompt on TrACE] you had to have some knowledge and be able to kind of synthesize everything and use it in a practical way. Not just learning information, but putting it together. (P11) Cognitive load, interaction, and attitudes toward online learning. Some learners in the school based cohort experienced significant technical difficulty when using TrACE. These challenges with usability increased the extraneous cognitive load for these learners and added to the cognitive tension provoked by cognitive dissonance during the online course. Hospital based therapists described an initial learning period after which they found TrACE easy to use, and they related this ability to overcome technical challenges to their regular use of technology for clinical documentation. Overall, most PTs learned to use TrACE effectively during the first three weeks of the course with support from the instructors. For all participants, TrACE activities required greater active participation, time, and engagement with the course material than a traditional online or face-to-face continuing education course. This was significantly different than many participants prior experiences with continuing education in either format, and most PTs had to adjust their expectations and their approach to completing the course material. Even though not all learners enjoyed using TrACE, most participants found the online course valuable and stated that they would consider additional online learning courses in the future. They appreciated the opportunity to practice critical elements of SATCo administration and scoring on real video cases. Like the open-ended prompts on Blackboard, TrACE activities provided the opportunity for learners to assess their understanding of key concepts and to make their clinical reasoning explicit. These activities also created a desirable difficulty that forced 36 NOVEL TECHNOLOGY FOR ONLINE LEARNING clinicians to slow down and reflect on their observations and clinical decisions in the online course. Ive been a clinician for several years; Im used to real-time and not really doing the videos. So, kind of using the video and trying to figure out when can I do slow motion to kind of help me figure out where I need to be. And a lot of kind of, Okay, start again. Where did this happen that I saw it? So, I think its just trying to figure out when I should replay it to get a better look, when I should slow it down, and figuring out the exact points where I saw what I saw. (P19) Those are good too when youre just learning about specificlike you had to make a comment, Okay, what compensatory strategies is the child using? Or, Look at the examiner in this one. What do you think? Is there something the examiner could do better? There were things like that where you could look at specific pieces and sort of develop your competencies for the childs compensatory strategies, examiner error. (P11) Since the courses were self-paced, instructors attempted to promote peer discussion and problem solving by limiting their engagement with participants in TrACE during the online modules. Most individual feedback was provided to learners at the end of each course. Only one learner took advantage of the ability to add their own question within TrACE. Most PTs described the need to balance work, family, and online learning responsibilities by focusing on completing all the course requirements within the allotted time frame as a reason for not engaging in discussion with peers across modules over time. Because discussion among participants did not occur, learners received delayed feedback on performance of TrACE activities. The lack of discussion also limited the ability of learners to utilize social relationships and supports to confidently construct new models and conceptions for the assessment and treatment of trunk control during the online course. Participants also talked about missing hands on practice and immediate feedback from instructors on their performance compared to prior experiences with in-person continuing education experiences. 37 NOVEL TECHNOLOGY FOR ONLINE LEARNING So. there were certainly times when I was kind of trying to figure out, in the midst of Hmm, I think this one has control and I think this one doesnt, just from watching videos and trying to figure it out for myself. And I kind of wish the response could have been more immediate, so I could get it stuck into my brain in that moment I mean, I guess its not hard because I can put the dot, but still, do you mean this, or do you mean this? Its a little bit harder. (P07) Watching the videos, I mean, Ive never heard of this test before. Everything was helpful. The videos as part of the learning, where you can watch, you can flip through a PowerPoint, were helpful. The TrACE videos were helpful in actually seeing it performed. But I still feel like I need that clinical hands-on time to really be able to go and implement it into practice. (P02) Overall, participants in both courses demonstrated positive attitudes towards the course design but desired opportunities for synchronous conversation, hands on practice, and more immediate feedback from the instructors. Despite these challenges, being forced to commit to decisions within the TrACE activities and to reflect on the implications of the new knowledge for current practice created a desirable difficulty that stimulated cognitive dissonance for practice change in learners. Most participants expressed confidence in their ability to identify tester errors and compensatory strategies in the video cases by the end of the online course. They understood how to administer and score the SATCo, but they were unsure of their ability to physically carry out the assessment within their individual practice settings due to characteristics of the SATCo and a lack of confidence in their hands-on skills. Dissonance provoked by characteristics of the SATCo. Even in the organization where all staff were required to complete the online course, most participants were motivated to learn the SATCo and related segmental treatment concepts. Therapists were excited to have a more specific approach to treating impaired head and trunk control for children with moderate to severe motor disability. They believed that the SATCo could provide valuable information to inform treatment planning and potentially improve outcomes for children on their caseloads. 38 NOVEL TECHNOLOGY FOR ONLINE LEARNING Therapists recognized the emerging level of evidence for the SATCo but expressed a pressing need for implementing segmental concepts in their clinical practice even though the approach was relatively new. I think what it gets down to for me is this is really useful-- this is a really great tool because weve never had anything close to-- any kind of tool to objectively look at trunk control. Thats always something thats been missing. (P11) I think this environment, its so key for kids to be able to look and use their eyes. And so we have a lot of kids that, in some of our more intensive programs, that have real issues with maintaining their heads in a position where they can benefit from even looking at things, or visually engaging with a switch or a scanner or something. So, it gives us a way to approach it maybe differently. (P09) However, this interest in immediately applying segmental assessment concepts learned online to treatment activities provoked additional cognitive dissonance. The online course provided an overview of the implications of segmental concepts for treatment of these children, but it lacked specific actionable strategies for therapists to utilize the results of segmental assessment for treatment. The tension between PTs excitement about segmental concepts and their uncertainty about how to use information from SATCo to develop a segmental intervention program for children on their caseloads resulted in some therapists dismissing the immediate usefulness of performing a formal SATCo in their practice. If I knew I had the resources to treat them effectively, I probably would be more inclined to try and do more assessing other than my little, more informal assessing, but more specific assessing. (P16) Thinking about mastering the complexity of performing a formal SATCo in their practice setting was also challenging for many participants. Acquiring specialized equipment, including a bench with specialized strapping and a video recorder, was a potential barrier for therapists in all 39 NOVEL TECHNOLOGY FOR ONLINE LEARNING practice settings but particularly for those providing home-based services. All participants expressed difficulty with arranging for two or more testers to perform a single assessment. SATCo was also perceived as a demanding assessment, requiring the testers to watch for errors and compensatory strategies in real time while simultaneously maintaining a neutral vertical trunk alignment throughout the testing. PTs viewed these aspects of the SATCo as barriers to implementation. Therefore, the therapists desire to access specific information about a childs segmental trunk control to facilitate more specific intervention planning was at odds with the perceived difficulty of carrying out the assessment in a real-world clinical setting. We practice in the school or home environments which can be challenging to get two or three PTs together for one student. (P20) I think the SATCo, in general, is challenging for a lot of our patients, not having the bench, and trying to keep the patient in the best alignment. So that can be hard for some kids and especially if I have a parent whos not engaged and its just me. (P17) Finally, therapists experienced dissonance when comparing rigorous administration of SATCo to less formal use of segmental assessment concepts in real-world practice settings. They wondered whether adapting information they had learned online to fit their routine practice was valid and acceptable. Some PTs viewed rigorous, competent performance of a formal SATCo as the only possibility. These therapists felt cautious about adapting or experimenting with SATCo in their clinical practice because they did not believe they had the skill and resources to perform it with fidelity. Well, I think the big difference is that this is an assessment, versus a treatment approach. So sometimes the treatment approach is, of coursetheres a lot more trial and error, depending on the individual. But if this is an assessment, I guess theres a little bit more pressure on my end if it feels like Im not getting it right. (P02) 40 NOVEL TECHNOLOGY FOR ONLINE LEARNING I think my challenge would be doing the test 100% correctly. I feel like I could do the test and get more of a general result, because I dont know if Ill be able to take a look at everything and make sure everything is done correctly, like my hand placement, and the childs position, and their hands, and notice that the childs touching my arm andSo, I know how its supposed to be done, Im just not sure it could be done 100% correctly in the home. (P04) PTs expressed the need to balance their interest in the more specific information about segmental trunk control that could be gained from formal SATCo administration with contextual factors that constrained their ability to fully implement it immediately. Overall, PTs experienced cognitive dissonance in their clinical reasoning and practice for children with moderate to severe motor disability related to both characteristics of the SATCo and the course design. Engaging in reflective practice both within the online course and within their routine clinical practice during and following the course provided therapists with a heightened awareness of the gap between their current practice and a segmental approach to assessment and treatment for trunk control. PTs viewed this dissonance through a contextual lens that included both personal and organizational factors as they worked to reduce or resolve the psychological tension. Viewing Dissonance Through a Contextual Lens All therapists identified organizational factors as barriers or supports to implementing segmental assessment in their own practice setting. For many participants, the process of resolving cognitive dissonance also required further reflection on personal factors including their beliefs and self-concept related to evidence-based practice and their confidence in performing a formal SATCo. Organizational context. Therapists described multiple barriers to implementing the SATCo in their routine clinical practice across all settings. These barriers included lack of time, 41 NOVEL TECHNOLOGY FOR ONLINE LEARNING scheduling and other workflow challenges, caseload demands, documentation requirements, multiple sites within a single organization, varying levels of parent or staff engagement during treatment sessions, and the lack of specialized equipment. For therapists treating infants and toddlers in natural environments such as home or daycare, another barrier was the frequent presence of siblings and the need to work within family routines during sessions. Therapists had also developed strong mental models representing a treatment philosophy specific to their practice setting. As a result, PTs sometimes perceived the segmental approach as inconsistent with their practice setting philosophy, and this perception influenced their opinion regarding whether or not SATCo might be useful. This tension was most prevalent among PTs working in early intervention or school based practice where the program philosophy is well established for each context. Early intervention PTs felt uncomfortable bringing specialized equipment and a video camera to a familys home or other natural environments to perform a formal SATCo. They described good coherence between coaching families to use segmental concepts and their current intervention approach, but they perceived the formal testing protocol and equipment as medical and inconsistent with their usual practice. For school therapists, the tension was related to integrating a more specific focus on segmental alignment and postural control with their primary focus on promoting the functional skills necessary to participate in the educational program. The school system is restrictive in ways that the medical health system- you know when youre in a purely medical model it doesnt restrict. But theres more issues that you have to deal with. So, you combine that with trying to absorb an approach thats looking at an impairment level trying to apply those concepts within the parameters of a school-based therapy model, you just found yourself weaving through concepts and saying, Well thats a great concept. How would that fit in my environment? (P01) 42 NOVEL TECHNOLOGY FOR ONLINE LEARNING The positive impact of supportive leadership was also evident for interview participants in two of the three organizations. Leaders in both organizations encouraged and supported staff to facilitate integration of SATCo into routine practice across multiple sites. Supports provided included dedicated meeting time, acquisition of necessary equipment, and staff development events to promote improved confidence with hands-on skills and to collectively agree on when and how SATCo could be implemented in each setting. We have four people that went through the course and so, we picked two for each site so that we could have a partner at each site, and that we can collaborate to kind of make it happen here, so its nice to get some peer feedback on it. And we have a meeting coming up next week that were going to meet and try to pull it together for all that. (P12) There was a leadership meeting all day on Thursday. And Im no longer on the leadership team. But a couple of the people were telling me that theyve already recommended that we do structured time for us to get into small groups and administer the SATCo in different settings. (P05) The presence of strong leadership support helped to facilitate optimism regarding the potential to overcome contextual barriers. Both organizations had well-established processes in place to encourage the translation of new evidence to routine practice prior to the online course. This structure provided an organizational evidence-based practice culture for staff which contributed to a general expectation that problems with implementation would be solved and that SATCo would be used across all sites and settings over time. In contrast, the culture of evidence-based practice at the third organization was focused on the individual clinician. All participants from this organization perceived the barriers related to implementing formal segmental assessments as prohibitive of routine use. Even though they recognized the value of the approach, they did not see a way forward that would allow them to integrate it into their practice. 43 NOVEL TECHNOLOGY FOR ONLINE LEARNING I feel like just logistically it would be hard to use it in our setting, just trying to get a second person and videoing, I feel like just because of time constraints and getting a second staff member, it would be hard to actually carry out the exact test. I think Ill definitely take components of it and in kind of an evaluation way, not the standardized test, take what Ive learned from learning the test. But I think, to do the test in the way it was intended, I think its hard logistically in our setting. (P19) Personal confidence. Participants intertwined their contemplation of practice change with considerations about both the complex organizational system within which they worked and their personal mental models related to the perceived difficulty and benefits associated with practice change. In addition, most therapists lacked adequate confidence in their hands-on skills to implement the assessment without additional support. They weighed their individual confidence against the organizational barriers and supports to determine if they would be able to incorporate segmental concepts into routine practice. Participants who were leaning toward implementing segmental concepts longed for live instruction of SATCo administration skills and feedback on their performance. This instruction was lacking in the online course. I would like a hands-on piece. Because I think I can watch the videos, and I see how to do it. So- I havent tried it yet, so I guess thats the- I will have to try it and see if I felt that I was given enough information in order to do it on my own or that- but I do. I think it would be more beneficial yet to have the in-person component. But, I see what theyre doing through the videos so I think I could do it. I would just want someone evaluating to see that Im doing it correctly. (P04) And I think thatll help people, to be able to do it [SATCo] in teams, and know that everybodys trained. And we can all give each other feedback and stuff. I think thatll really help raise, I mean, for me, and Im sure everybody else, confidence level in being able to do it. (P05) These participant quotes also demonstrate the variation in attitudes about responsibility for closing the gap related to contextual barriers and inadequate confidence when PTs were considering adoption of segmental assessment in practice. Some PTs expressed a desire for 44 NOVEL TECHNOLOGY FOR ONLINE LEARNING instructors or future courses to provide the practice and feedback they required, while other therapists took the initiative to plan for practice and feedback with peers to improve their confidence following the online course. Individual attitudes toward responsibility for solving organizational and personal contextual challenges also contributed to the varied ways that therapists resolved their cognitive dissonance. Resolving the Dissonance All participants who experienced cognitive dissonance were compelled to find a way to resolve this tension. Although the dissonance was mediated by organizational and personal contextual factors, these factors alone did not dictate the process of resolving the tension. Therapists used three different strategies to reduce or resolve cognitive dissonance when considering individual practice change following the online course: accommodating new information in current practice, waiting for solutions to overcome barriers to use, and experimenting with adapting information for practice change. This was an iterative process in which a therapist often demonstrated behavior and attitudes characteristic of more than one strategy simultaneously or over time. Accommodating new information without practice change. For some therapists, the perceived benefit of incorporating the SATCo in their practice did not outweigh the perceived mismatch with their practice philosophy, workflow challenges, or SATCo requirements. Organizational or opinion leader support for practice change was not always adequate to overcome these challenges with implementation. Instead, therapists elected to accommodate the new information with prior conceptions and clinical reasoning. Therapists in all three organizations demonstrated this strategy for dissonance resolution. These PTs valued what they 45 NOVEL TECHNOLOGY FOR ONLINE LEARNING learned online, and they worked to find a way to integrate this new information with their current concepts without changing their approach to clinical reasoning or practice behavior. You know when you do something for a really long time and you dont necessarily label it anymore, you just know its there. Thats kind of where it was. Like, Oh yeah, yeah thats what theyre using. You know its there, but you dont necessarily label that. (P03) I mean, I can still do all those things that I was doing, as far as trying to build better control of the trunk, in terms of extension, flexion, rotation, and all those things. I can still do those without the SATCo. And in my mind, the SATCo gives you more information, but it makes it harder to specifically target [treatment]. (P16) Accommodating new concepts within their current practice allowed therapists to reconcile their belief in the value of a segmental approach as part of evidence-based practice with their desire to maintain their current clinical reasoning and practice behavior. Therapists resolved the dissonance provoked by acquiring new knowledge about segmental concepts without changing their prior conception of how to approach posture control assessment and treatment for children. Waiting for solutions to overcome barriers to practice change. A second strategy for reducing cognitive dissonance emerged when therapists believed that the benefit was greater than the cost of change but did not believe that they could personally overcome these barriers in their practice setting. Therapists in all three organizations utilized this strategy. These PTs elected to wait for others, either organizational leaders or course instructors, to adapt the information or solve other challenges that made it difficult to use the SATCo and related treatment concepts in their routine practice. I feel like I have the assessment now. I can handle that, but give me some ideas of how, more specifically, I can use this in my daily work. And certainly, there are people out there who will come up with ways to use it that will be valuable to a lot of people. (P16) 46 NOVEL TECHNOLOGY FOR ONLINE LEARNING You know, maybe have another module for practical application of this [assessment] protocol or something like that, and maybe do a little segment on showing people how it can be modified to their practice setting. (P10) Therapists who used this strategy for dissonance resolution often described applying concepts from the online course in their clinical reasoning, goal setting, and documentation of the quality of trunk control for children with moderate to severe motor impairment. The PTs working in one of the two organizations with formal leadership support for SATCo implementation also talked about their expectation that the leadership team would address implementation challenges. These therapists expected that the segmental approach would be part of routine practice within their organization over time. Therapists in the third organization were resigned to using parts of the new information learned online without any expectation of full implementation of the segmental approach in practice. Overall, PTs who were waiting for others to find solutions changed their conceptions of posture control but only implemented information that was easy to incorporate in their routine practice. Experimenting and adapting information for practice change. The most common strategy that PTs in both online cohorts used to resolve inconsistencies between prior and new conceptions of pediatric posture control was to trial small amounts of information in their own clinical practice. This experimentation involved what therapists described as informal assessment that was applied during treatment sessions in the form of caregiver education, manual handling, or adjustment of positional supports without specialized equipment. And I kind of tried the other day with one of my patients. I dont have the straps but I just kind of used my legs to secure over their lap and just kind of played with the handling at different levels. (P12) 47 NOVEL TECHNOLOGY FOR ONLINE LEARNING I feel like I was doing it a little bit more informally going through because I didnt have a bench and things at the time. So, Im just more looking at hand placements along the different levels, like different parts of the rib cage, or things like that, and just trying to communicate to the families or caregivers to look at smaller segments, and challenge them a little bit more. Or say, Oh, look theyre really falling over. You need to move your hands up a little bit higher. More in a treatment perspective I guess, than formal assessment. (P06) Therapists utilized reflection during and following clinical practice experiences to process the results of trialing segmental concepts with infants and children on their caseload. At times, PTs were surprised to notice segmental principles of trunk control influencing their actions even when they were not yet fully convinced that the approach would work in their setting. They talked about finding themselves using segmental manual support during treatment or adjusting a childs adaptive equipment to provide support closer to the level of informally assessed trunk control. I dont know why I didnt make this connection- I guess because it was before the [live] class where you guys really showed the positioning and stuff. Now that I think about it, this same kid, the last time I went in to see her, and they had her in the prone stander, and I actually its funny, I just realized this-- I actually did just that. I raised up the straps, and I raised up a couple of different things, and I changed some of the supports, and she looked better. (P03) So, when I was working with the student, it was really interesting to me, because when I would give her, just say, axillary support, she had head control. But as soon as I moved down to upper thoracic, or mid-thoracic, or whatever it was, she lost it completelyAnd it was really interesting to assess control segmentally like that. And I thought, Okay. Theres something to this. (P05) These experiences led to further experimentation and reflection in clinical practice which built their confidence with adapting information and willingness to use a segmental approach more consistently in practice. Some therapists integrated segmental language into caregiver education for children with moderate to severe trunk control impairments. Other PTs considered 48 NOVEL TECHNOLOGY FOR ONLINE LEARNING ways to use existing positioning equipment to provide more segmental support in the classroom or during standardized assessments. So, he [a toddler] is going down the chain, and Ive had quite a bit of discussion with his parents about where his control is at right now. And even though I havent taken him through the test, we can kind of see where his level of control is. And his parents really started understanding. They were like, Why isnt he doing this? Why isnt he doing that? And when we break it down, and I showed them where along the chain hes starting to get control, that seemed to help them quite a bit in understanding what they had to do for him. (P02) I could immediately try some of the things, you know, try different segments. I was immediately telling parents or staff members, Well, try moving your hands down a little bit. They seem pretty sturdy there. Lets see, their headtheyre not only able to keep it in static for five seconds, they can also look around and reachso lets challenge them a little bit more and move your hands down a little bit lower. (P06) The iterative process of trialing new practices, observing the results, reflecting on these observations, and adapting new information in clinical practice rekindled PTs desire for additional problem-solving and practice with peers. They anticipated that peer practice would further increase their confidence in manual skills as well as confirm that their individual results were valid. Therapists in two of the three organizations worked with leaders to plan both formal and informal collaborative learning activities with peers to further problem solve how to adapt information and to spread the use of segmental concepts in their practice setting. If we worked in groups, or you know small groups, or things like that to be able to record some videos once we got parent permission, and then show them and talk about themdiscuss them at one of our PT meetings about who would be performing the SATCo, to be able to review it and see how we felt, see how other people feel. Get a little bit more knowledge about it, and then try and have people be, you know, participating and using it a little bit more. (P05) I think we need to get together and maybe practice it on a mutual patient or on each other and just kind of review it. And then well probably have to talk about presenting it to our other co-workers once we feel confident, and then well just figure out how to order the equipment. (P14) 49 NOVEL TECHNOLOGY FOR ONLINE LEARNING Participants who engaged in ongoing critical reflection, peer discussion, and experimentation within a supportive organizational context following the online course described increasing consistency of using segmental concepts in treatment and strong intentions to fully implement the SATCo over time. This decision represented an important change in therapists conceptions of postural control development, assessment, and treatment for children with moderate to severe motor impairments. Changes in conceptions appeared to correlate with the individual therapists creativity, depth of critical reflection, attitudes toward responsibility for overcoming barriers to change, and tolerance of uncertainty or failure when experimenting with the new approach in practice. Compared to the PTs who were waiting for solutions, therapists who were reducing dissonance through experimenting and adapting information also expressed greater self-efficacy and more interest in collaborating with peers to overcome barriers to implementation. Each therapists effort to use clinical reasoning and critical reflection to navigate the dissonance was interrelated with personal and organizational contextual factors. Few therapists utilized a single strategy to reduce the tension between prior and new conceptions of trunk control assessment and treatment. Moreover, strategy selection was mediated by the therapists available social network, how they weighted their confidence in trialing new behaviors, and the presence or lack of peer support for practice change. For some participants, resolution of cognitive dissonance signified the end of attempts to integrate new information in practice. However, other therapists viewed the process of implementation as iterative and ongoing. The degree of responsibility that each therapist accepted for continuing the implementation process 50 NOVEL TECHNOLOGY FOR ONLINE LEARNING varied, and this factor appeared to relate to their primary strategy for resolving the cognitive dissonance. Discussion Overall, the results of this study provide information to help bridge the gap in knowledge about the interaction between course design and the psychological processes therapists use to navigate the tension created by simultaneously holding prior and new conceptions when learning a new clinical skill online. This section will compare current literature about course design and clinician attitudes about learning clinical skills online, collaborative social learning, contextual factors influencing practice behavior following continuing education, and the role of reflective clinical practice in knowledge translation with the findings of this study. Therapists conceptualization of the role of TrACE in online learning will be explored. Literature related to the theme of cognitive dissonance and other cognitive affective processes which emerged during the grounded theory analysis and therapists intention to change or not change clinical practice will also be discussed. Finally, limitations of the study will be outlined, and directions for future research will be suggested. Research Question 1: Attitudes toward online learning for clinical skills Reported learner satisfaction with the pilot Introduction to SATCo course was consistent with findings of other studies where online courses were based on adult learning principles.20,24,27,37,90 Even though many participants experienced significant usability challenges associated with the TrACE media player which increased the extraneous cognitive load91 of the course, most PTs described an enriched learning experience and positive attitudes toward learning online. Elements of evidence-based course design10,17,18,20,34,36,43,81 that were supportive of learning the SATCo online included scaffolding information through sequential unfolding of 51 NOVEL TECHNOLOGY FOR ONLINE LEARNING course modules, opportunities for ongoing practice and self-assessment, and guided reflection activities. The course design was effective in generating both excitement and cognitive dissonance about the segmental approach to trunk control, and many therapists expressed interest in exploring how these concepts could be implemented in their practice setting. Research Question 2: The role of TrACE in learning a clinical skill online. Like other studies of online learning for clinical skills,26,47,92,93 the requirement to respond to clinical questions about realistic video case examples and the multiple opportunities for simulated practice in TrACE contributed to increased confidence in specific skills following the online course. In particular, PTs were confident in their ability to identify compensatory posture control strategies or test administration errors after practicing these skills within the TrACE media player. However, administration of the SATCo was more complicated than the clinical skills taught in other studies, and confidence gained online was not adequate to overcome therapists desire for additional in-person training prior to implementing the formal assessment in practice. PTs in the online only course did not receive any hands-on skills training, but clinicians in the hybrid course benefitted from hands-on practice and immediate feedback on performance from instructors during a one-day in-person workshop. All participants agreed that even though the online modules and practice provided a good understanding of how to perform the SATCo, hands-on training with feedback would be essential to master this assessment. This finding from our study brings into question the assertion by Butler et al69 that the SATCo can be reliably administered and scored by diligently following the protocol without extensive training or practice. 52 NOVEL TECHNOLOGY FOR ONLINE LEARNING Research Question 3: The role of asynchronous interaction in TrACE The self-paced asynchronous design of the online course was appealing to PTs, but this element of the course design also limited collaborative learning and discussion. Although some therapists did read comments posted by peers during the TrACE activities, no meaningful discussion between participants occurred during the course. Social interaction is considered paramount for translating knowledge from continuing education into clinical practice,13,94-96 however our findings agree with other authors who describe online discussion occurring primarily between learners and the instructors rather than among peers in asynchronous learning online. The lack of common deadlines within the 12-week timeframe for completing the modules contributed to missed opportunities for discussion with other participants. It is also possible that usability challenges with TrACE discouraged participants from returning to prior modules once completed. Another factor which may have influenced online discussion was the ease of more immediate communication among participants within the same organization. The participants in these online continuing education courses differed from a more typical online cohort in which learners are distributed over a wide geographic area. Multiple clinicians from each organization completed the course within the same time period. This provided a unique opportunity for inperson collaborative learning within two of the three organizations that had an organizational evidence-based practice culture with supportive leadership. As a result, several therapists reported discussing course concepts or problem-solving technological challenges with peers during the online course, and some PTs were planning collaborative learning to improve confidence with hands-on skills in their practice setting following completion of the course. 53 NOVEL TECHNOLOGY FOR ONLINE LEARNING Using the TrACE media player within this self-paced asynchronous course design effectively provided increased time for clinicians to process information and facilitated knowledge comprehension, critique, critical reflection, and synthesis through case-based reasoning and practice. The cognitive dissonance provoked by these activities encouraged PTs to consider practice change. However, the self-paced course design did not allow collaborative knowledge creation or problem-solving online during the course. In a mixed methods study of learner preferences for interaction in self-paced online courses, Rhode97 also reported challenges for learner to learner interactions with self-paced design. However, these learners valued interactions with instructors and course content more than interactions with other learners in selfpaced courses whereas participants in this study highly valued collaborative learning with colleagues during the course. More research is needed to explore pediatric PTs preferences for various learning interactions in online continuing education and the role of collaborative social learning and personal learning styles in online course design. Research Question4: Intention to implement SATCo One interesting finding regarding collaborative social learning was that several participants reported planning or completing collaborative learning experiences with peers in their organization and the development of a formal implementation process for SATCo following completion of the online course. Opportunities to problem-solve complex cases with peers have been associated with improved confidence to initiate practice change,47,93 and discussing information with colleagues is one process for resolving cognitive dissonance.45,89 Informal peerto-peer learning following the online course was reported by therapists in the two organizations with formal processes and leadership support for spreading the use of SATCo within their workplace. For these therapists, the supportive organizational culture facilitated ongoing social 54 NOVEL TECHNOLOGY FOR ONLINE LEARNING learning in-person rather than online, and this unique support appears to have improved therapists confidence in their ability to implement SATCo in their practice over time. The contextual lens and practice change The impact of organizational culture on the ability of health professionals to access supports and navigate barriers when implementing new clinical practices is wellestablished.2,13,96,98-102 In addition, the fact that nearly all early intervention and school based PTs attended the hybrid Introduction to SATCo course in their organization may have provided a critical mass103 and momentum that augmented some therapists sense of self-efficacy to initiate practice change. These therapists became internal facilitators of ongoing social learning95,98,103 to implement the SATCo more widely in their organization. Furthermore, therapists from the hospital which had a formal process for spreading new clinical practices had been selected strategically for the online course so that they would be able to develop other staff and facilitate the spread of the segmental approach. In contrast, the organizational culture of the third organization contributed to limited practice change for individual therapists. These findings are consistent with prior research on the impact of organizational context on adoption of new clinical practices.104-107 Even though factors at the systems level influenced how PTs viewed their ability to implement SATCo in their practice setting, organizational context alone did not explain the variation in the dissonance resolution process and intention to change or not to change clinical practice. A supportive organizational culture is helpful in facilitating practice change, but several authors propose that implementation of new practices also depends on cognitive and psychological processes for each clinician.45,103,108,109 Personal factors including prior experiences, readiness, and tolerance of change,98 confidence,3,102,103 attitudes about 55 NOVEL TECHNOLOGY FOR ONLINE LEARNING responsibility for overcoming challenges,96,103,110 cognitive dissonance45,103 and self-efficacy81,103 also colored the contextual lens. Prior research on organizational culture has focused predominantly on identifying systemic factors in the local context that function as facilitators or barriers to practice change.102,107 In addition, knowledge translation has historically been viewed as a linear process in which evidence is moved in a rational and systematic way from researcher to clinicians and other users.98,100,111 Recently, several authors95,103,112,113 have proposed that translation of new knowledge to practice is a messy and complex process in which the nature of the evidence is negotiated, adapted, and contested in healthcare decision making. Decisions made in clinical practice are based on information from a variety of sources beyond research evidence including clinical expertise, contextual and cultural knowledge, personal knowledge, patient characteristics, and practical or ethical knowledge.55 Our results support the idea that both personal and organizational context are important in the complex process through which new knowledge and behaviors are debated, trialed, and adapted within clinical practice. Due to the supportive organizational context within which most participants in this study worked, personal factors had a stronger influence than organizational culture on the way individual clinicians chose to reduce or resolve the cognitive dissonance that was provoked by learning about the SATCO and related segmental concepts online. Cognitive-affective processes in knowledge translation. A foundational strategy when designing educational or other interventions to promote translation of new knowledge to practice is to help practitioners identify the gap between current and recommended practice.34,72,81,100 However, awareness of the knowledge to practice gap is not enough to change practice.114 In addition to experiencing adequate tension for change, 56 NOVEL TECHNOLOGY FOR ONLINE LEARNING clinicians must be motivated to change within a supportive context.98,107,112 Brehaut et al45 suggest that using constructs from cognitive and educational psychology to tailor knowledge translation interventions may better explain the impact of these knowledge translation interventions on behavior change than adhering solely to theories focused on macro level factors such as contextual barriers and facilitators. Our results provide initial support for the role of cognitive-affective processes such as cognitive dissonance, desirable difficulties, self-efficacy, and critical reflection in augmenting sustained motivation for physical therapists to experiment with implementing a challenging new practice like the SATCo once they have identified a gap in practice.103 To our knowledge, this is the first study to utilize innovative technology such as TrACE to facilitate these processes as part of the online course design. According to cognitive dissonance theory, individuals can reduce dissonance in several different ways. These strategies include making the inconsistent behavior less relevant by altering their commitment to changing, discounting the information, attributing their failure to change behavior to external factors, or changing their practice. 89,115 These methods of reducing dissonance can occur subconsciously even when clinicians state their overall support for practice change. Therapists in our study who accommodated new concepts without changing their current practice appear to have subconsciously made changing their behavior less relevant to their self-concept as evidence-based practitioners. In effect, they altered their commitment to the goal of implementing the SATCo in their practice setting. Alternatively, PTs who were waiting for others to offer solutions to implementation challenges attributed their inability to change practice to external factors including multiple contextual barriers. 57 NOVEL TECHNOLOGY FOR ONLINE LEARNING Dissonance resolution and intention to change practice On the continuum of innovation adoption described in the Diffusion of Innovations Theory,76 therapists who were accommodating information or waiting for solutions were aware of the segmental approach, and some of them were persuaded that it should be implemented in pediatric practice. Some of these PTs described a change in clinical reasoning or in the language used to describe what they were already doing in practice. However, if these therapists did not also engage in experimenting with segmental concepts routinely in reflective clinical practice they did not change their approach to trunk control assessment and treatment. In order to change clinical practice, clinicians must believe that the current approach is not adequate and that implementing the new evidence based practice will improve the effectiveness of care.115 They must also be motivated and committed to the goal of implementing the new practice and believe in their ability to achieve this goal.98,103 Therapists who experimented with segmental assessment and treatment activities or trialed administering the SATCo on a small number of children in their practice were initially drawn to this approach by their strong belief that outcomes for children on their caseload would improve. They persisted in working to overcome challenges to using segmental concepts in practice by continually reflecting on the outcomes of their experimentation, adapting and trialing different ways of using concepts in practice, and sharing information with colleagues. This iterative decision process is similar to the clinical reasoning process therapists utilize when developing expertise through clinical practice experiences.116 Overall, therapists who were experimenting and adapting information described greater self-efficacy, critical reflection, and focus on social learning within their organizations than therapists who did not experiment or adapt information for their practice setting. In particular, 58 NOVEL TECHNOLOGY FOR ONLINE LEARNING reflective clinical practice helped therapists critically appraise their skills, attitudes, and concept of posture control. This process facilitated critical review, evaluation, and revision of their clinical reasoning over time. Because therapists were interviewed soon after completing the online course, no PTs had progressed to sustained use of the SATCo or segmental concepts in their routine practice. However, several therapists in two of the three organizations had developed formal plans to spread the innovation across multiple sites suggesting a commitment to sustained use at the time of their interviews. One important difference between Rogers stages of innovation-decision76 and our findings is that the process of reducing cognitive dissonance and moving along the continuum of practice change was not linear. Rogers describes a step-wise movement in which the tasks of one stage must be completed before moving on to the next stage. Our findings suggest that both cognitive-affective processes like cognitive dissonance and the larger process of clinical practice change are non-linear and complex. (See Figure 3.) Few PTs utilized a single strategy to reduce cognitive dissonance, and therapists frequently described attitudes, cognitions, and behavior characteristic of multiple strategies and stages simultaneously when asked to reflect on their clinical practice. These findings are consistent with other research suggesting that translation of evidence to practice is a complex, emergent, social process dependent on organizational context in which knowledge and practice cannot be separated.103,107 In conclusion, it is important to consider micro-level processes such as cognitive dissonance, desirable difficulties, self-efficacy, and critical reflection when designing online learning to promote clinician behavior change because PTs consider multiple forms of evidence at the point of care delivery.103,117 For the PTs in this study, the process of considering adoption of a segmental approach to trunk control assessment and treatment involved ongoing iterative 59 NOVEL TECHNOLOGY FOR ONLINE LEARNING cycles of learning in the context of reflective clinical practice. This learning in practice included weighting and negotiating tacit knowledge grounded in their clinical experience against research based evidence and their confidence with skills learned online. Furthermore, the process of implementing new information in clinical practice is as iterative and complex at the individual level. To our knowledge, this is the first study to describe a non-linear process of innovationdecision utilized by physical therapists in the context of reflective clinical practice when considering whether or not to implement practice change following online continuing education. Implications for future research. Social learning with colleagues was an important component of practice change for therapists in our study. This kind of collaborative learning does not appear to be feasible in a course that is entirely self-paced. Research to address the usability challenges identified for TrACE in this study will be reported in a separate manuscript. Future research on how collaborative technology such as TrACE could contribute to asynchronous collaborative learning of clinical skills when integrated with strategies such as intermediate deadlines, opportunities for limited synchronous interaction with other learners, or a post-course community of practice81 would inform course design for knowledge translation in online continuing education. Exploration of the influence of learning styles on therapists preferred interaction and instructional strategies in online continuing education is also warranted. In addition, it will be important to determine which characteristics make clinical skills conducive to online or hybrid course designs in order to maximize the efficiency and effectiveness of continuing professional development activities for physical therapists. It would also be interesting to explore how cognitive-affective and contextual factors interact over time for therapists in the two organizations that were working on spreading implementation of SATCo at the time of this study. Finally, the role of cognitive dissonance and other cognitive-affective 60 NOVEL TECHNOLOGY FOR ONLINE LEARNING processes related to knowledge translation strategies such as audit and feedback, knowledge brokering, and peer review should be explored. Limitations The inclusion of physical therapists with varying levels of clinical experience who were working in a wide variety of pediatric practice settings in the theoretical sampling process promotes transferability of our findings. However, the strong influence of a supportive organizational culture and leadership in two of the three organizations is atypical, and the impact of personal context and cognitive affective processes on clinicians efforts to use the SATCo in practice may be greater in our study than in other organizational contexts. Conclusion Based on our findings, designing learning experiences which provoke cognitive dissonance may be effective in enhancing clinicians awareness of gaps in knowledge and practice, confidence in trialing new practice behavior, and motivation to engage in the sustained effort necessary for translating evidence to real-world clinical settings. In conjunction with other best practices in online education, innovative technology such as TrACE may be utilized to provoke cognitive dissonance through a combination of desirable difficulties, simulated skills practice, and critical reflection that stimulates intuitive and analytic reasoning in realistic clinical cases. Translation of innovative instructional technology to online continuing education in healthcare may pose implementation challenges unrelated to the educational content. Even with emerging evidence demonstrating the value of such innovations, research to identify and address contextual barriers such as perceived increase in design, instructor, or technological support may be required before these innovations are adopted more widely. Instructional designers must also recognize the personal and organizational factors that color the contextual lens through which 61 NOVEL TECHNOLOGY FOR ONLINE LEARNING healthcare professionals consider how and when to use information learned online in practice. Even in the most supportive organizational culture, both personal and organizational factors influenced the strategies clinicians used to navigate cognitive dissonance in this study. 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J Health Serv Res Policy. 2009;14(3):156164. Li LC, van der Wees PJ. "Knowing is not enough; we must apply. Willing is not enough; we must do". Phys Ther. 2015;95(4):486-491. Riemer M, Rosof-Williams J, Bickman L. Theories related to changing clinician practice. Child Adolesc Psychiatr Clin N Am. 2005;14(2):241-254. Jensen GM, Gwyer J, Shepard KF. Expert practice in physical therapy. Phys Ther. 2000;80(1):28-43; discussion 44-52. Plafky C. From neuroscientific research findings to social work practice: a critical description of the knowledge utilisation process. Br J Soc Work. 2016;46:1502-1519. 69 NOVEL TECHNOLOGY FOR ONLINE LEARNING Table 1. End of Module Reflection Prompts Module Topic Question Module 4: Reflect on your own pediatric therapy practice and describe how you would Open and Closed apply the concept of open and closed kinetic chains to one assessment or Chains treatment activity. For example, you could reflect on how having the child hold the tape measure in the Pediatric Functional Reach Test may or may not affect your assessment based on the concepts of open and closed kinetic chains. Please provide a specific example from your own current or anticipated clinical practice. Module 6: Reflect on your own pediatric therapy practice and what you would need to do SATCo to try a SATCo assessment. What barriers or supports are present for you in your setting? Provide a specific example of the setting, how you would need to Administration secure the equipment, who could assist you, and any other factors you would need to consider. Module 7: Reflect on your own pediatric therapy practice. How will you approach Common Tester identifying and correcting tester errors when administering the SATCo in your Errors setting? Module 8: Reflect on your current approach to your work with infants and children. After Compensatory completing this learning module about compensatory strategies that children use Strategies when postural control is inadequate: What (if anything) will you STOP doing in your clinical practice? What (if anything) will you START doing? What (if anything) will you CONTINUE doing? Module 9: How do you anticipate balancing rigorous administration and scoring of the SATCo Scoring SATCo with the demands of a real-world clinical setting and the need for clinically relevant scoring? 70 NOVEL TECHNOLOGY FOR ONLINE LEARNING Table 2. Participant Characteristics Hybrid online course Online only course Professional degree Bachelors Masters DPT Additional Degrees Advanced Masters tDPT PhD or equivalent Years of Pediatric Experience (Mean, SD, Range) Primary Pediatric Practice Setting Hospital outpatient School (age 3-21 years) Early Intervention Administration Online learning confidence (Mean, SD, Range) Prior online learning Yes No Online Course (n=50) 34 16 Interview Participants (n=19) 13 6 20 11 19 9 6 5 3 14 1 0 9 0 16.8, 12.3, 1-42 20.5, 13.5,1-42 16 14 18 2 6 6 6 1 8.33, 1.56, 5-10 8.05, 1.5, 5-10 37 13 14 5 71 NOVEL TECHNOLOGY FOR ONLINE LEARNING Figure 1. Recruitment and Sampling Flow a Breckenridge J, Jones D. Demystifying theoretical sampling in grounded theory research. Grounded theory review: an international journal 2009;8(2). Figure 2. Navigating Cognitive Dissonance for Practice Change 72 NOVEL TECHNOLOGY FOR ONLINE LEARNING Figure 3. The non-linear process of clinical practice change a Rogers EM. Diffusion of Innovations. 5th Edition ed. New York, New York: Simon and Schuster; 2003. 73 NOVEL TECHNOLOGY FOR ONLINE LEARNING Appendix A Description of the Study: I am in learning how physical therapists learn clinical skills in online courses. Since you participated in the pilot online training for the Segmental Assessment of Trunk Control (SATCo), I would like to ask you some qualitative questions about your experience with the online course and with the TrACE media player system. Would that be ok? Semi-Structured Interview Guide: 1. Please tell me about your work as a physical therapist a. Where/How long have you worked there? How many hours a week do you work? b. How long have you been a physical therapist? How long a pediatric PT? c. What is your typical caseload like? Ages? Diagnoses? Level of severity of motor impairments? d. When is the last time you attended a formal continuing education course in any format prior to this course? (live workshop, online course, lecture, etc.) e. 2. What experiences have you had with online learning prior to this course? Reflect for a moment on your experiences with learning the SATCo in the online course. Tell me about what it is like to learn a clinical skill online. a. Could you share a specific example? b. How does your experience in learning SATCo online compare to other ways you have learned about and tried to implement clinical assessment measures? 3. c. Probe for attitudes toward online learning for clinical skills d. Probe for role of asynchronous discussion and/or TrACE in learning online Tell me about your experience using the TrACE media player in the online course. a. What was helpful or not helpful about TrACE? 74 NOVEL TECHNOLOGY FOR ONLINE LEARNING b. Probe for role of asynchronous discussion in TrACE c. Probe for confidence in identifying tester errors and/or patient postural control compensations d. Probe for intention to use the SATCo in school-based practice following online training. Thank you for taking the time to talk with me about your experiences. Your responses will be kept confidential and you will receive a summary of the findings once our study is completed. 75  ...

... Body Appreciation, Self-Esteem, and Resilience in Adolescents with a Congenital Hand or Upper Extremity Anomaly 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: Terri Beckwith, MPH, CCRP Copyright October 5, 2021 By: Terri Beckwith, MPH, CCRP All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ______________________________ Elizabeth Moore, PhD 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 ______________________________ UPPER EXTREMITY DIFFERENCES 1 Body Appreciation, Self-Esteem, and Resilience in Adolescents with a Congenital Hand or Upper Extremity Anomaly Terri A. Beckwith Department of Interprofessional Health & Aging Studies, University of Indianapolis UPPER EXTREMITY DIFFERENCES 2 Abstract Adolescents with a congenital hand or upper extremity (CHUE) anomaly who underwent surgical correction at an early age may be sensitive to psychosocial well-being during a vulnerable period of development. As a dominant amount of literature focuses on improving and maintaining functional capacity after surgery, it is also necessary to understand psychosocial factors (PSFs) that may contribute to long-term treatment outcomes. The purpose of this study was to explore PSFs of body appreciation, self-esteem, and resilience within a population of adolescents with a surgically corrected CHUE anomaly; ascertain if these factors are influenced by gender, age, or extremity involvement; and determine what variables may predict resilience in the population. Using a non-experimental, analytic cross-sectional study design at a tertiary pediatric orthopedic institution, a total of 31 participants responded to a survey incorporating the Body Appreciation Scale-2 (BAS-2), the Rosenberg Self-Esteem Scale (RSES), and the Child and Youth Resilience Measure (CYRM-R). Statistical significance (p = .011) was found for RSES scores between young (10-13 year-old) and old (14-19 year-old) adolescents. Correlation coefficients were greater than .30 for both BAS-2 and RSES scores when compared to CYRM-R scores. Multiple regression analysis resulted in a model that explained 44.3% of the variance, with a linear predictive model of F(2, 25) = 9.96, p < .001; R2 = .44. Patients who appreciate and find value regarding their anomaly are speculated to have greater resilience and therefore more favorable long-term outcomes. Keywords: adolescent, body appreciation, self-esteem, resilience, congenital hand anomaly UPPER EXTREMITY DIFFERENCES 3 Acknowledgments I would first like to extend my gratitude to my committee, Dr. Laura Santurri, Dr. Elizabeth Moore, and Dr. Heidi Ewen. Their time, energy, and patience have helped me get through one of the most time-consuming, stressful, and rewarding academic experiences. Writing a doctoral dissertation is an arduous, and at times puzzling, endeavor for which I am exceptionally grateful to have been able to complete at UIndy. I would also like to acknowledge the Hand and Upper Extremity department at Scottish Rite Hospital for Children for allowing me the opportunity to utilize their resources and pursue this study with their patient population. Their training and knowledge have afforded me skills I will continue to use in my career. Also, I would like to acknowledge those dear friends who were brave enough to ask how everything was going and patiently listen as I replied and rambled on and on. Meghan, David, Katy, Marilyn, thank you for your interest, or what resembled interest, when I was explaining my data. And finally, thank you to all the friends and family who graciously checked in on me as I worked on my degree amid the pandemic; your support was instrumental to my well-being. UPPER EXTREMITY DIFFERENCES 4 Table of Contents Title ................................................................................................................................................. 1 Abstract ........................................................................................................................................... 2 Acknowledgments........................................................................................................................... 3 Table of Contents ............................................................................................................................ 4 List of Tables .................................................................................................................................. 7 Chapter 1: Introduction ................................................................................................................... 8 Problem Statement ...................................................................................................................... 9 Purpose Statement ..................................................................................................................... 10 Research Objectives .............................................................................................................. 10 Significance of the Study .......................................................................................................... 11 Chapter 2: Literature Review ........................................................................................................ 13 Body Appreciation .................................................................................................................... 13 Body Appreciation and Adolescents ..................................................................................... 14 Body Appreciation and Pediatric Orthopedics ...................................................................... 15 Body Appreciation and Congenital Hand or Upper Extremity Malformations..................... 16 Self-Esteem ............................................................................................................................... 17 Self-Esteem and Adolescents ................................................................................................ 17 Self-Esteem and Pediatric Orthopedics ................................................................................. 18 Self-Esteem and Congenital Hand or Upper Extremity Malformations................................ 18 Resilience .................................................................................................................................. 20 Resilience and Adolescents ................................................................................................... 21 Resilience and Pediatric Orthopedics .................................................................................... 22 UPPER EXTREMITY DIFFERENCES 5 Resilience and Congenital Hand or Upper Extremity Malformations .................................. 22 Connections between Body Appreciation, Self-Esteem, and Resilience .................................. 23 Social Comparison Theory and Protective Factor Model of Resilience ............................... 23 Summary ................................................................................................................................... 25 Chapter 3: Method ........................................................................................................................ 25 Study Type and Design ............................................................................................................. 25 Setting........................................................................................................................................ 26 Participants ................................................................................................................................ 26 Data ........................................................................................................................................... 27 Instruments ................................................................................................................................ 27 Body Appreciation Scale- 2 ................................................................................................... 27 Rosenberg Self- Esteem Scale ............................................................................................... 28 Child and Youth Resilience Measure- R ............................................................................... 29 Procedures ................................................................................................................................. 30 Recruitment ........................................................................................................................... 30 Informed Consent .................................................................................................................. 31 Data Collection ...................................................................................................................... 32 Data Management .................................................................................................................. 32 Statistical Analysis .................................................................................................................... 32 Chapter 4: Results ......................................................................................................................... 34 Body Appreciation, Self-Esteem, and Resilience Among Gender, Age, and Extremity Involvement ............................................................................................................................... 34 Variables Predicting Resilience ................................................................................................ 36 UPPER EXTREMITY DIFFERENCES 6 Commentary .............................................................................................................................. 36 Chapter 5: Discussion ................................................................................................................... 37 Body Appreciation .................................................................................................................... 37 Self-Esteem ............................................................................................................................... 39 Resilience .................................................................................................................................. 40 Prediction of Resilience ............................................................................................................ 41 Chapter 6: Limitations .................................................................................................................. 41 Chapter 7: Implications and Future Research ............................................................................... 42 Chapter 8: Conclusion................................................................................................................... 43 References ..................................................................................................................................... 45 Appendix A: Permission of Use for the Body Appreciation Scale-2 (BAS- 2)............................ 68 Appendix B: Permission of Use for the Rosenberg-Self-Esteem Scale (RSES) .......................... 69 Appendix C: Permission of Use for the Child and Youth Resilience Measure-R (CYRM- R).... 70 Appendix D: Recruitment Letter .................................................................................................. 71 Appendix E: Information Sheet and Entry to Survey Platform .................................................... 72 UPPER EXTREMITY DIFFERENCES 7 List of Tables Table 1: Participant Demographics and Characteristics ........................................................ 61 Table 2: Participant Clinical Diagnosis by Extremity ........................................................... 63 Table 3: Comparison of Body Appreciation Scale-2 by Gender, Age, and Extremity ......... 64 Table 4: Comparison of Rosenberg Self-Esteem Scale by Gender, Age, and Extremity ...... 65 Table 5: Comparison of Child and Youth Resilience Measure-R by Gender, Age, and Extremity ............................................................................................................................... 66 Table 6: Results of Multiple Linear Regression for Predictors of Resilience ....................... 67 UPPER EXTREMITY DIFFERENCES 8 Body Appreciation, Self-Esteem, and Resilience in Adolescents with a Congenital Hand or Upper Extremity Anomaly The period of adolescence, 10 to 19 years of age as defined by the World Health Organization (2019), is a critical time when psychosocial well-being is exceptionally vulnerable due to developmental growth and new social experiences (Albert et al., 2013). During the adolescent years, individuals are more sensitive to external influences by fellow peers, social media, and cultural standards of acceptance (McElhaney et al., 2008). In addition, adolescents with chronic health conditions or physical differences have an increased risk of enduring greater psychological and social conflicts (Andersson et al., 2011; Sawyer et al., 2007). As such, those with a visible congenital hand or upper extremity anomaly may internalize their experiences more frequently and repercussions more intensely than their fellow peers. The prevalence of a congenital hand or upper extremity anomaly is estimated at 21 to 27 cases for every 10,000 live births (Ekblom et al., 2010; Goldfarb et al., 2017). Most of these cases require surgical intervention at a young age to promote growth restructure and physical development (Little & Cornwall, 2016), indicating a substantial amount of professional medical care and the potential for permanent scarring or unique aesthetics (Krakowski et al., 2016). Consequently, this may heavily shape adolescents perception of themselves, their decisions, and social interactions as they grow older (Krakowski et al., 2016), posing a considerable amount of variability in how they adapt to their physical anomaly (Wallander et al., 1998). Therefore, it is important to evaluate the psychosocial factors (PSFs) that may contribute to healthy well-being in adolescents with a congenital hand or upper extremity (CHUE) malformation. Multiple PSFs considerably contribute to the healthy psychological functioning of those with a chronic condition or physical limitation, such as stress or social support. In young patients UPPER EXTREMITY DIFFERENCES 9 with a CHUE anomaly, body appreciation, self-esteem, and resilience are specific PSFs that may offer insight into this population's well-being as they significantly overlap in their psychological constructs (Olsoon et al., 2013; Smolak, 2004; Trzesniewski et al., 2006). Comparing their extremity appearance with normative peers may negatively influence opinions about their body, and by association self-esteem, as physical appearance connects to perceptions of self-worth and self-respect (Baudson et al., 2016). Both constructs arguably relate to traits of acceptance, selfefficacy, and adaptability, common elements associated with overcoming adversity, also recognized as resilience (Ungar, 2004). Patients with a CHUE anomaly must endure treatment and acclimate to new hand or upper extremity function during years of significant development, in which case a strong sense of resilience may empower one to thrive despite a corrected yet visible physical malformation. Problem Statement Within the PSFs of body appreciation, self-esteem, and resilience, variables of gender, age, and extremity involvement may play a role in achieving healthy well-being. Females commonly have higher body dissatisfaction and lower self-esteem than their male peers in this age group (Frost & McKelvie, 2004), making it appear that males may be less affected by differences related to appearance. Also, as adolescents age, they are likely to become more comfortable with themselves and capable of more responsibilities upon entering young adulthood (Steinberg & Cauffman, 1996). As a result, maturity may influence how those with a CHUE anomaly become more accepting of their condition and less bothered by their physical difference. Extremity involvement may additionally play a role in the well-being of the population. In social circumstances, it is arguably easier to conceal an abnormality on a single extremity than on both. This is especially true if it is not the dominant hand, or specifically the UPPER EXTREMITY DIFFERENCES 10 right hand, which frequently is more common and culturally preferred (Papadatou-Pastou et al., 2019). For those in which both extremities required treatment, concealment is less likely and may have a greater impact on PSFs of body appreciation, self-esteem, and resilience. Purpose Statement The purpose of this study was to explore the PSFs of body appreciation, self-esteem, and resilience in adolescents with a surgically corrected CHUE anomaly and ascertain if the selected PSFs were influenced by gender, age, and extremity involvement. Additionally, to determine which variables predicted high resilience within the population. Research Questions This study answered the following research questions: 1. In adolescents with a surgically corrected CHUE anomaly, was there a significant difference in body appreciation, self-esteem, and resilience scores by demographics of gender and age? 2. In adolescents with a surgically corrected CHUE anomaly, was there a significant difference in body appreciation, self-esteem, and resilience scores between those who have single extremity involvement compared to those with both extremity involvement? 3. In adolescents with a surgically corrected CHUE anomaly, what variables, including PSFs of body appreciation and self-esteem, predicted higher resilience? Research Objectives The following objectives addressed the studys research questions. 1. To determine if there was a significant difference in body appreciation as measured with The Body Appreciation Scale-2 (BAS-2), between: UPPER EXTREMITY DIFFERENCES 11 a. Genders (male and female) b. Age (younger (10-13 years) and older adolescents (14-19 years)) c. Extremity involvement (single extremity and bilateral extremity) 2. To determine if there was a significant difference in self-esteem, as measured with the Rosenberg Self-Esteem Scale (RSES), between: a. Genders (male and female) b. Age (younger (10-13 years) and older adolescents (14-19 years)) c. Extremity involvement (single extremity and bilateral extremity) 3. To determine if there was a significant difference in resilience as measured with the Child and Youth Resilience Measure (CYRM-R) between: a. Genders (male and female) b. Age (younger (10-13 years) and older adolescents (14-19 years)) c. Extremity involvement (single extremity and bilateral extremity) 4. To determine what variables, including body appreciation and self-esteem, predicted high resilience. Significance of the Study The results of this study provided critical insight into the PSFs of body appreciation, selfesteem, and resilience in the adolescent population with a surgically corrected CHUE malformation. These results can help healthcare providers and parents understand the potential shortcomings in mental health and well-being among youth and find ways to strengthen supportive networks. Additionally, youth educational communities may utilize the findings to develop elemental topics for public health programs that promote compassion and inclusion in UPPER EXTREMITY DIFFERENCES 12 the adolescent population. Definition of Terms The following terms were used within the project: Adolescent: An individual between the ages of 10 and 19 (World Health Organization, 2019). Congenital anomaly: Anatomic or structural anomaly that occurs in the womb and can be identified prenatally, at birth, or sometimes later in life (World Health Organization, 2020). Self-esteem: The resulting score after completing the patient-reported outcome instrument related to an individuals positive or negative attitude towards themself, and beliefs regarding their worth, value, and abilities (Rosenberg, 1965). Body appreciation: The resulting score after completing the patient-reported outcome instrument related to the favorable acceptance, opinion, and respect of ones body while dismissing media-promoted concepts of beauty ideals (Avalos et al., 2005) Resilience: The resulting score after completing the patient-reported outcome instrument related to the capacity to utilize and negotiate psychological, social, cultural, and physical resources to sustain well-being when exposed to adversity (Resilience Research Centre, 2016, para. 4). UPPER EXTREMITY DIFFERENCES 13 Literature Review While there has been extensive literature published on pediatric congenital upper extremity anomalies, including hand malformations, much of the focus centers on the anatomical progression of physical development, approaches to surgical intervention, and potential genetics that may be associated with the anomaly (Bae et al., 2018; Bae & Goldfarb, 2014; Kozin & Zlotolow, 2015; Ozols et al., 2019; Stutz et al., 2014; Widerberg et al., 2016; Winfeld & Otero, 2016). As a result, there is an under-representation in the literature regarding psychosocial factors, such as body appreciation, self-esteem, and resilience, that may contribute to long-term outcomes of intervention for such pediatric orthopedic conditions. Consequently, researchers are finding that such concepts are concerns for these individuals and require empirical evidence prior to interventions or therapies. Body Appreciation Body appreciation is defined as an individuals favorable acceptance, opinion, and respect of ones physical body while dismissing the media-promoted ideals of what it means to have beauty (Avalos et al., 2005). In comparison to the term body image, appreciation may act as an inclusive construct of the concept, as body image refers to the multi-dimensional domains that encompass body-related behaviors, perception of physical characteristics, such as weight or height, and feelings towards ones body (Cash, 2004; Quittkat et al., 2019). Body appreciation is a significant factor associated with general health as it directly influences daily decisions regarding diet, nutrition, reputable exercise habits, and how one presents themselves to others (Avalos et al., 2005). In addition, a positive sense of body appreciation promotes an ability to engage in social circumstances without reservations of impending physical attributes and internally value ones self outside of rigid media aesthetic standards (Avalos & Tylka, 2006). UPPER EXTREMITY DIFFERENCES 14 Conversely, having an unhealthy or negative view is related to body dissatisfaction, social physique anxiety, and detrimental idealizations of what it may mean to be accepted in society (Avalos et al., 2005). Such idealizations may lead to depression, anxiety, body dysmorphic disorders, or extreme physical interventions, such as unnecessary cosmetic or surgical procedures (Sarwer, 1997; Tylka & Kroon Van Diest, 2013). Body Appreciation and Adolescents With respect to the adolescent population, body appreciation may be a significant factor influencing psychosocial and cognitive development (Zarrett & Eccles, 2006). This transition period from childhood into young adulthood is when new habits begin to take shape in addition to physical, social, and emotional progression (Zarrett & Eccles, 2006). For example, an adolescent may become more consciously aware of eating habits and how ones household and culture represent a relationship with food or physical activity (Das et al., 2017). Additionally, with developmental maturity, adolescents begin to acknowledge their appearance in parallel to their peers and what may pass as acceptable beauty standards seen in media and social platforms (Kenny et al., 2016). Within the field of pediatrics, a dominant amount of research pertains to body image rather than body appreciation (Smolak, 2004), yet the terminology is on the rise. In a study by Bacevicience and Jankauskiene (2020), the relationship between body appreciation and irregular eating behaviors was studied within a population of older adolescents using the BAS-2 scale, and patient-reported measures related to body dissatisfaction, body functionality, self-esteem, and participation in sports. Body appreciation was negatively correlated with a higher body mass index, body dissatisfaction, and irregular eating habits, while positive correlations were found among self-esteem, body functionality, and sports participation (Bacevicience & Jankauskiene, UPPER EXTREMITY DIFFERENCES 15 2020). The authors concluded that higher body appreciation in adolescents is associated with less irregular eating habits, preventing an unhealthy relationship with food consumption (Bacevicience & Jankauskiene, 2020). In a similar study (Marta- Simes et al., 2020) of 362 Portuguese adolescents recruited through participating schools, researchers examined well-being using self-reported outcome measures related to affiliative memories, social safeness, and body appreciation. The authors found significant correlations among all concepts and noted that body appreciation appears to directly contribute to physical, psychological, and social environments, such as school or related activities (Marta- Simes et al., 2020). Body Appreciation and Pediatric Orthopedics Research specific to body appreciation is limited within pediatric orthopedics. Yet, body image has recently become a focal interest of researchers in the field, potentially creating a path for body appreciation. Schwieger et al. (2016) analyzed and compared body image and quality of life in female patients with idiopathic scoliosis between two groups, those treated with observation and those treated with a brace. Patient-reported outcome measures were assessed at baseline, six months, and two-year follow-up provider visits (Schwieger et al., 2016). No significant difference was found between body image or quality of life between groups at all time points (Schwieger et al., 2016). Yet, poor quality of life was significantly correlated to poor body image in each group through two years of follow-up (Schwieger et al., 2016). The authors concluded that body image be assessed at initiation and through treatment to ensure the best outcomes (Schwieger et al., 2016). Concerns about adolescent idiopathic scoliosis have also prompted researchers to develop and validate a version of the Body Image Disturbance Questionnaire (Cash et al., 2004) specific to the condition. Auerbach et al. (2014) analyzed data UPPER EXTREMITY DIFFERENCES 16 in two phases using a modified version of the questionnaire in conjunction with three similar assessments related to body esteem, body function, and depression. Data was collected from 49 scoliosis patients and 98 age-matched controls. Study results were consistent, showing a high level of discriminant validity among similar assessments (Auerbach et al., 2014). The authors concluded that the Body Image Disturbance Questionnaire is a valid instrument specific to pediatric orthopedic scoliosis and can be used to examine body image disturbance within the population (Auerbach et al., 2014). Body Appreciation and Congenital Hand or Upper Extremity Malformations In adolescents with a congenital hand or upper extremity anomaly, topics tangent to body appreciation and body image are beginning to take shape, such as discussion of anomaly appearance and intervention satisfaction. Kelley et al. (2016) conducted a qualitative study with 33 children and their parents using semi-structured interviews to learn how hand malformation and treatment influenced daily life, including school and extra-curricular activities. Forty-eight percent of children were bothered by their hands appearance, and 73% of children and parents expressed functional difficulties (Kelley et al., 2016). The authors suggested that early hand therapy focused on improving functional adaptation would be beneficial; however, a thorough discussion on body image and self-esteem factors should also occur. Similarly, Franzblau et al. (2015) qualitatively explored stress and coping in adolescents with congenital hand anomalies who received surgical intervention. Forty patients and parents were interviewed about stress associated with hand function, appearance, and emotional coping methods (Franzblau et al., 2015). Among the identified and analyzed themes, 27% of children and parents reported stress related to hand appearance, with 30% expressing concealment as a coping strategy (Franzblau et al., 2015). The authors concluded there is an amount of anticipated stress when addressing UPPER EXTREMITY DIFFERENCES 17 treatment for congenital hand differences. Still, it would be beneficial to improve the identification of such potential stressors to direct resources towards supportive systems and coping strategies (Franzblau et al., 2015). Gaps of study, specific to body appreciation in relation to congenital hand and upper extremity malformations, are evident within the field of pediatrics and exceedingly so in the specialty of pediatric orthopedics. Individuals with congenital hand and upper extremity malformations have observable differences in their physique; therefore, it is imperative to ensure positive body appreciation within this population to initiate healthy decisions into adulthood. Self-Esteem Self-esteem refers to an individuals positive or negative attitude towards themselves and their beliefs regarding their worth, value, and abilities (Rosenberg, 1965, as cited by DuBois, 2003). Dynamic experiences determine the development of self-esteem from birth to adulthood, which formulate a sense of belonging and acceptance, and the desire for personal fulfillment (Ellis, 1995). Positive and balanced self-esteem helps prevent the likelihood of poor mental health and poor relationships, and it decreases the fear of making mistakes and failing (Meisenhelder, 1985). As adolescents begin to take ownership of their decisions and evaluate their sense of belonging in society (Mann et al., 1989), their psyche is more impressionable and vulnerable to the impact of events, such as creating new peer relationships, taking risks, acknowledging physical appearance, and setting healthy boundaries (Prior et al., 2014; Reniers et al., 2016; Schreuders et al., 2019; Seddig, 2020). Consequently, if adolescents attain healthy selfesteem, they are more equipped to navigate such events (Bialecha-Pikjul et al., 2019). Self-Esteem and Adolescents UPPER EXTREMITY DIFFERENCES 18 The study of self-esteem in the pediatric adolescent age group is a vastly explored topic. Many studies focus on self-esteem related to physical attributes, such as obesity, exercise, eating habits (Liu et al., 2015), and mental health ailments, such as depression, anxiety, and social adjustment (Trzesniewski et al., 2006). More recently, social media use has arisen as a worrisome commodity impacting adolescent self-esteem. Adolescents who emotionally invest in social media and use it more often than three hours a day and during night hours are more likely to exhibit lower self-esteem (Woods & Scott, 2016). Self-Esteem and Pediatric Orthopedics Similar to the topic of body appreciation, research specific to self-esteem in pediatric orthopedics is emerging in the field of scoliosis. In a study by Zhang et al. (2011), 46 patients with adolescent idiopathic scoliosis were divided between two surgical and non-surgical intervention groups with self-esteem and life satisfaction assessed at the initial visit and one year after treatment. No differences were found between groups at the initial visit for life satisfaction, but self-esteem scores were higher in the non-surgical group (Zhang et al., 2011). At one year of follow-up, life satisfaction and self-esteem scores were significantly higher in the surgically treated group, and self-esteem in the non-surgical group significantly decreased over time (Zhang et al., 2011). The authors concluded that within the adolescent idiopathic scoliosis population, both concepts of self-esteem and life satisfaction are significantly impacted by surgical intervention (Zhang et al., 2011). Self-Esteem and Congenital Hand or Upper Extremity Malformations Self-esteem in the adolescent population of those with congenital hand or upper extremity deformities has not thoroughly been examined. This is largely due to the use of validated selfreported assessments that focus simultaneously on functional extremity improvement and general UPPER EXTREMITY DIFFERENCES 19 quality of life, such as the Pediatric Outcomes Data Collection Instrument (PODCI) or the Patient-Reported Outcomes Measurement Information System (PROMIS) (Bae et al., 2018; Miller et al., 2020; Waljee et al., 2015; Wall et al., 2020). As these assessments are reliable, valid, and offer ease of administration, at times, they may be limited depending on the researcher's interests or concerns. Using a tool built for a specific PSF may provide more detail about a population. In a recent systematic review, Miller et al. (2020) examined 23 studies of upper limb anomaly management, including hand-specific differences, to determine what types of psychological assessment tools are frequently used. Only one study utilized a specific selfesteem inventory and self-imaging profile, a 10-year follow-up study by Bellew et al. in 2011. Bellew et al. (2011) reviewed psychological factors of 25 patients who underwent a toe-to-hand transfer that included validated self-esteem and self-image measures, among others. Ninety-one percent of parents and 88% of patients reported they were satisfied or very satisfied with surgical intervention results, based on variables of function, appearance, donor-site, psychosocial well-being, and public reaction (Bellew et al., 2011). Study results suggested that patients and families generally had positive clinical outcomes, yet the RSES used in the study appears both atypically scored and interpreted. Only patients aged 18 years and older in the sample completed the assessment (11 out of 25), despite it being a reliable and valid tool for those younger in age (Bagley & Mallick, 2001). Additionally, the reported cohort average of 15.46 in the authors sample was compared to a normative of 34.73 (Bellew et al., 2011). This suggests an unclear reversal and comparison of the scales outcome value, in which the reader may find self-esteem not to be representative of the sample. The methods used to study this PSF could stand for improvement and clarification to better understand the studys results. UPPER EXTREMITY DIFFERENCES 20 The study of self-esteem is prevalent in many adolescent populations; however, it has yet to be explored in depth with congenital hand or upper extremity differences. Considering that surgical intervention is a predominant choice of treatment in this population, self-esteem is a factor that should be preserved and supported alongside treatment. Promoting healthy selfesteem in this population allows patients to understand their extremity differences should not hinder their attitude towards their self-worth. Resilience The concept of resilience refers to the capacity to utilize and negotiate psychological, social, cultural, and physical resources to sustain well-being when exposed to adversity (Resilience Research Centre, 2016, para. 4). It serves as a vital construct in overcoming stressful obstacles and difficult circumstances by rebuilding a sense of psychological balance (Hart et al., 2012). Having strong resilience prevents an unhealthy extension of negative emotions that may arise during such occurrences and lowers the risk of developing unhealthy mental health conditions (Ristevska-Dimitrovska et al., 2015). Considering the nature of resilience, multiple perceptions exist as to how the concept is best represented. Some authors have concluded it to be in sync with ones personality and linked to specific traits (Oshio et al., 2018). Others have concluded it to be a process of overcoming and becoming inoculated to adverse events (Bonanno, 2004). As resilience research is emerging in the adolescent population, reviewing the limited literature from both perceptions is important. This may provide an easier way to understand coping strategies within the patient population of those with a congenital hand or upper extremity malformation that required surgical intervention (Leys et al., 2020). Yet, for this study, the researchers anticipated a methodical approach from the view of unique traits. UPPER EXTREMITY DIFFERENCES 21 Treatment for a congenital anomaly requires continuous adaptation among social interactions in which such traits will continue to develop from adolescence into adulthood. Resilience and Adolescents Establishing resilience in adolescence is a crucial factor for cognitive development. It directs an adolescent to harness personality traits used to overcome challenges or setbacks that naturally occur during this period, such as peer pressure, bullying, relationships, or academic shortcomings (Olsson et al., 2003). Moreover, such psychological strength arguably equips adolescents for the natural next stages of social development as young adults, including consequential decisions and outcomes, such as attending college, starting a career, or living abroad. Resilience has been studied in pediatric conditions that commonly involve sensitive treatment options or complex decision-making for families with exceptional consequences, such as violence, trauma, or cancer (Isoknt et al., 2019; Ortiz & Sibinga, 2017; Ridings et al., 2019; Rosenberg et al., 2018; Van Schoors et al., 2015; Wu et al., 2015). Additionally, the concept was explored in parents and caregivers of such patients. A study by Quezada et al. (2016) examined 51 sets of pediatric burn patients and their guardians to understand how the concept of resilience connects post-traumatic stress and burn survivor adjustment. Both parents and patients reported high levels of resilience, and specifically within burn patients, age and stability by caregiver were associated with more resilience (Quezada et al., 2016). The authors concluded that early intervention and caregiver well-being are strong indicators for positive survivor adjustment (Quezada et al., 2016). Similarly, Pagorek-Eshel and Finklestein (2019) examined anxiety, self-differentiation, and resilience in a population of 89 pairs of parents and adolescents exposed to missile fire for 13 years. No significant difference was found between UPPER EXTREMITY DIFFERENCES 22 adolescent and parent-reported resilience; however, higher family resilience was predicted by higher individual adolescent resilience, highlighting the value of a familial network contributing to protective factors against violence (Pagorek-Eshel & Finklestein, 2019). Resilience and Pediatric Orthopedics Resilience in the realm of pediatric orthopedics has not been examined as thoroughly but is beginning to become a topic of interest in idiopathic arthritis and concussion work. In a qualitative phenomenological study exploring daily living with juvenile idiopathic arthritis, the concept of taking ownership and being proactive about ones life emerged as an arching theme (Cartwright et al., 2015). Through in-depth interviews, adolescents described how they managed the disease and found ways to live as typical teenagers, despite the condition. The researchers concluded that resilience allowed patients to establish resourcefulness, adjust to medical challenges, and develop a strong sense of personal worth. (Cartwright et al., 2015). Lalibert Durish et al. (2018) studied psychosocial resilience in relation to children with a history of concussions and orthopedic injuries. Seventy-five children completed the Connor-Davidson Resilience Scale combined with a Post-Concussion Symptom inventory to determine if psychological resilience is a significant predictor of persistent post-concussive s symptoms (PCS) (Lalibert Durish et al., 2018). The authors found that high psychological resilience may be a protective factor for mediating PCS since low psychological resilience was significantly correlated to persistent PCS (Lalibert Durish et al., 2018). Resilience and Congenital Hand or Upper Extremity Malformations For the adolescent population with congenital hand or upper extremity malformations, no studies exist that directly and specifically assess the concept of resilience to the best knowledge of the researcher and time of study, exploiting a gap for needed research endeavors. Therefore, it UPPER EXTREMITY DIFFERENCES 23 is important to study resilience in this adolescent population to determine if protective or predictive factors exist and how they may influence immediate and long-term health outcomes after treatment. Having a congenital hand or upper extremity ailment is a unique condition that may make challenges experienced as natural growth more severe or difficult to overcome. Yet, adolescents with these conditions may have a higher capacity or threshold of resilience than their fellow peers due to the experiences endured with treatment and through more supportive networks. As resilience is a concept to be explored in this specific adolescent population, establishing an initial assessment of resilience is instrumental in understanding how these adolescents utilize their psychological, social, and physical resources to maintain well-being. Connections between Body Appreciation, Self-Esteem, and Resilience The relationship between body appreciation and self-esteem is described by an individuals internal perception and attitude toward themselves (Avalos et al., 2005). As selfesteem includes belief about self-worth, the favorable acceptance and value of ones body is viewed as a layered component of the construct. Having a positive sense of body appreciation may be associated with having a positive sense of self. Inversely, having lower self-esteem may include a poor sense of body appreciation. This relationship has frequently been explored by the tangent term of body image and self-esteem with similar conclusions (Danielsen et al., 2012; Mendelson et al., 2002; Webser & Tiggemann, 2003). In adolescent patients with congenital hand or upper extremity malformation, having positive body appreciation and high self-esteem may indicate an adolescent favorably accepts their body and believes themself worthy despite their congenital differences. Social Comparison Theory and Protective Factor Model of Resilience UPPER EXTREMITY DIFFERENCES 24 The connection of resilience to body appreciation and self-esteem may be viewed through a lens of Social Comparison Theory, which focuses on how an individual will naturally evaluate themself by comparison to others to determine social or personal worth (Festinger, 1954, as cited by Gerber et al., 2018). An individual will either engage in upward comparison, which includes comparing ones self to another believed to be superior or more skilled, or downward comparison, which includes comparing ones self to another believed to be less skilled or inferior (Festinger, 1954, as cited by Gerber et al., 2018). Consequently, either comparison runs a risk of potential pitfalls, yet under healthy circumstances, may inspire behavior to improve upon ones self or take stock of accomplishments and resources (Festinger, 1954, as cited by Gerber et al., 2018). In an adolescent patient with a congenital hand or upper extremity anomaly who underwent successful treatment, comparing themself to others without such a condition may allude to upward emotions of unfairness, inferiority, or discouragement (Sullivan et al., 2016). Yet, promotion and preservation of high regard to self-esteem and its constructs, including body appreciation, allow an adolescent to draw on strengths from past experiences and reflect on ones supportive network, resulting in a sense of hardiness. This capability ultimately modifies the upward comparison to constructive action, as the adolescent either dismisses the comparison or overcomes it by acknowledging the value of their accomplishments or finding resourceful ways to grow. Additionally, the lineage between variables of body appreciation, self-esteem, and resilience is demonstrated through the Protective Factor Model of Resilience within Resilience Theory, which focuses on the interplay between risk factors and protection mechanisms that reduce a negative outcome or moderate exposure effect (Ledesma, 2014; Ungar, 2004). Such UPPER EXTREMITY DIFFERENCES 25 factors offset or mediate a conceivable impact that would otherwise have an opposing effect on a desired outcome. Self-factors or personality factors, also described as internal resilience variables, yield protection in favor of the individuals well-being (OLeary, 2010). Body appreciation and self-esteem are considered internal variables that theoretically may act as a protective mechanism towards adversity, such as a congenital hand or upper extremity malformation. Therefore, the resilience created by these two factors would mediate the influx of rigid beauty and physical acceptance standards in the adolescent treated for the condition and beliefs of value or worth in this developmental period. Summary Among reviewed studies that focus on pediatric congenital upper extremity anomalies, especially hand malformations, the specific concepts of body appreciation, self-esteem, and resilience are limited. Most publications focus on functional capacity and broad, allencompassing health questionnaires related to quality of life. As such, it is necessary to examine the relationships of body appreciation, self-esteem, and resilience to better understand this vulnerable population and work towards tailoring treatment and improving long-term outcomes resulting from surgical interventions. Method Study Type and Design This was a non-experimental study using an analytic cross-sectional design. The primary researcher (T. B.) investigated body appreciation, self-esteem, and resilience in adolescents with a CHUE anomaly who underwent surgical intervention. Upon approval from the University of Indianapolis and the University of Texas Southwestern Institutional Review Boards (IRB), UPPER EXTREMITY DIFFERENCES 26 recruitment of eligible participants occurred through Scottish Rite Hospital for Children (SRH) from February 05, 2021, to May 31, 2021. Setting This study was managed through the SRHs Center of Excellence in Hand Disorder department (Hand Center). Clinics within this department provide specialized care for the pediatric population with orthopedic hand and upper limb anomalies, including complex reconstruction following trauma. Families or health care providers may request appointments to within the clinic, and both private and public insurance plans are accepted. Additionally, the institution provides financial program assistance to those who may need this resource for treatment. As a result, patients seen in the clinics are composed of robust demographics and a wide variety of CHUE conditions. Participants Using convenience sampling, the primary researcher recruited adolescents who underwent surgical intervention for a CHUE malformation and had an established relationship with the institution through the SRH Center of Excellence in Hand Disorders treatment clinics. Inclusion criteria were defined as a patient who was currently between 10 and 19 years old, diagnosed with a CHUE malformation and underwent surgical intervention for treatment purposes, and could understand and speak English. Specific diagnosis of a CHUE anomaly included one or more of the following on either hand or upper extremity: polydactyly, syndactyly, symbrachydactyly, vascular malformation or overgrowth syndrome of the upper extremity due to somatic mutation, radial or ulnar dysplasia, ectrodactyly, brachydactyly, camptodactyly, clinodactyly, or thumb hypoplasia (Goldfarb et al., 2015; Oda et al., 2010). Exclusion criterion included adolescents diagnosed with a CHUE anomaly in conjunction with UPPER EXTREMITY DIFFERENCES 27 an additional congenital orthopedic-related ailment. For example, a patient with polydactyly and hip dysplasia did not meet inclusion criteria, nor did a patient with thumb hypoplasia and clubfoot. Data The primary researcher collected demographics, participant characteristics, and outcome data through an anonymous survey. Demographic data included: current age (years), gender (male or female), race (American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Pacific Islander, White or Caucasian), and ethnicity (Hispanic or Latino or not Hispanic or Latino). Participant characteristic data consisted of current school grade (middle school, high school, college), height (feet and inches) and weight (pounds) for body mass index calculation, diagnosis of CHUE (list of previously described diagnoses), family history of CHUE (yes, no, or unknown), hand or upper extremity involvement (left, right, bilateral), number of surgeries, and age at the time of surgery (under one year, one to two years, three to four years, four years or older). Outcome data included the BAS-2 to assess body appreciation, the RSES to assess self-esteem, and the CYRM-R to assess resilience. Instruments Body Appreciation Scale- 2 The BAS-2 is a self-reported 10 item measurement tool with statements related to acceptance of, favorable opinion of, and respect of ones body (Tylka & Wood-Barcalow, 2015). Participants responded to each item using a five-point Likert-like scale ranging from 1 = Never to 5 = Always. Results were scored by averaging participant responses for all items. Scores ranged from 1 to 5, with a higher score indicating higher body appreciation. The BAS-2 is freely available to use in research with notification to primary authors. Tylka and Wood-Barcalow UPPER EXTREMITY DIFFERENCES 28 (2015) reported good internal reliability with Cronbach = .91 - .94 and a three-week test-retest stability (r = .90). Psychometric properties of the BAS-2 have also been established in the adolescent population and determined to have consistent reliability with Cronbach = .94 - .95 (Halliwell et al., 2015), .93 - .94 (Gngora et al., 2020), and .91- .94 (Lemoine et al., 2018). Construct validity for the BAS-2 has been established in the young adult population with strong positive correlations to appearance evaluation in the Appearance Evaluation subscale of the Multidimensional Body Self-Relations Questionnaire (r = .80, p < .001), self-esteem with the RSES (r = .62, p < .001), proactive coping with the Proactive Coping subscale of the Proactive Coping Inventory (r = .42, p < .001), and inversely related to body surveillance with the Body Surveillance subscale of the Objectified Body Consciousness Scale (r = -.42, p < .001) (Tylka & Wood-Barcalow, 2015). In a systematic review by Kling et al. (2019), the BAS-2 was found to have supportive convergent and discriminant validity properties and strong structural validity with a one-dimensional factor structure through exploratory factor analysis (Tylka & WoodBarcalow) and confirmatory factor analysis (Lemoine et al., 2018). Rosenberg Self-Esteem Scale The RSES is a self-reported 10 item measurement tool related to overall feelings of selfworth and acceptance (Rosenberg, 1965). Each of the 10 items is a statement in which the participant responded on a four-point Likert-like scale from 1 = strongly agree to 4 = strongly disagree. Results were scored by totaling response values, ranging from 10 to 40, with a higher score indicating higher self-esteem. The RSES is freely available for professional research and is the most used tool to measure self-esteem (Schmitt & Allik, 2005). Psychometric properties have been established in the adolescent population with a Cronbach = .86 indicating good internal consistency (Bagley et al., 1997), with one-week test-retest stability (r = .82) (Fleming & UPPER EXTREMITY DIFFERENCES 29 Courtney, 1984), and with a two-week test-retest stability (r = .87) (Dittmann et al., 2009). In a review of self-esteem measures in weight management for children and adolescents, the RSES has acceptable face, convergent, discriminant, and content validity properties (Rosenberg, 1965 as cited by Tirlea et al., 2019). Construct validity for the RSES has been established among young adults in relation to self-esteem and self-concept dimensions. Positive correlations were found in self-concepts of academic (r = .38, p < .01), social (r = .28, p < .01), emotional (r = .50, p < .01), family (r = .28, p < .01), and physical (r = .46, p < .01 ) (Martn-Albo et al., 2007). Construct validity of the RSES is also supported by outcomes in an adolescent population in which high self-esteem was found to be negatively correlated with the four sub-scales of emotional and behavioral disorders (Bagley & Mallick, 2001). Child and Youth Resilience Measure The CYRM-R is a self-reported 17-item measurement tool related to personal skills, peers, social skills, caregiving, and support (Jefferies et al., 2018; Resilience Research Centre, 2016). Each of the 17 items is a statement answered by the participant using a five-point Likertlike scale ranging from 1 = not at all to 5 = a lot. Results are summed to gain the total score, ranging from 17 to 85, with a higher score representing higher resilience. The CYRM-R is available free of charge and can be used with permission. In a review of resilience measurement scales by Windle et al. (2011), the CYRM was found to have high content validity, extensive research efforts piloted in 11 countries, and appears to target the adolescent age group well. Psychometric properties are still in development as the CYRM has been modified from an original 58 (CYRM-58) item scale down to 28 (CYRM-28), and currently a revised 17 (CYRMR) (Resilience Research Centre, 2018; Ungar et al., 2008). The CYRM-R has demonstrated good internal consistency with an overall Cronbach = .87, .82 for the personal resilience subscale, UPPER EXTREMITY DIFFERENCES 30 and .82 for the relational resilience subscale (Jefferies et al., 2018; Resilience Research Centre, 2018). Test-retest stability has not been reviewed in the CYRM-R, yet within the CYRM-28, test-retest for the total scale at a two-week interval was found to be r = .82, and at a three-month interval r = .75, indicating stability (Daigneault et al., 2013). Additionally, construct validity has been demonstrated in the CYRM-28 with significant associations between the Satisfaction with Life Scale and the CYRM-28 overall (r = .40, p < .001) and notably the CYRM-28 context of Social/Cultural (r = .37, p < .001), and also the Strengths and Difficulties Questionnaire (SDQ) Prosocial Scale and the CYRM-28 overall (r = .41, p < .001) and notably the CYRM-28 context of Spiritual/Community (r = .34, p < .001) (Sanders et al., 2015). Procedures Recruitment The primary researcher requested a waiver of consent and Health Insurance Portability and Accountability Act (HIPAA) with the primary IRB (University of Texas Southwestern) to pre-screen records to identify eligible subjects for participation through the SRH Hand Center. To meet the age requirements for the current year of the study, the researcher requested a list of surgical cases from the years 2001 to 2011 from the institutions Health Information Management department, as treatment for CHUE anomalies is frequently initiated from birth up to pre-school age (Blauth & Schneider-Sickert, 2012; Oda et al., 2010). A total of 186 records met inclusion criteria. This list was generated using current procedural terminology (CPT) and internal classification of diseases (ICD-10 and ICD-9) coding for inclusion diagnoses, existing surgical case(s), age parameters, and contact information. The list was then formatted into Excel by the analyst and emailed to the primary researcher using the encrypted hospital network. UPPER EXTREMITY DIFFERENCES 31 An IRB-approved recruitment letter was mailed through the SRH Hand Center addressed to the potential participant (and a parent or legal guardian if under 18 years of age) using the last known mailing address. The letter included a summary of the study, the contact information of the researcher, a quick response (QR) code, and a uniform resource locator (URL) link via Redcap (Vanderbilt, n.d.) that allowed anonymous one-time access to the study survey questions. Letters returned to the institution were re-addressed with an updated address using a third-party program licensed by the institution. The option to receive a $5.00 incentive was offered to the participant after completing all survey questions. This was funded by the primary institutions internal research advisory panel upon approval of the study. After a participant completed the anonymous set of questionnaires, they were given the option to volunteer an email address to receive an electronic gift card. This link disconnected from the questionnaire platform and connected to another to ensure the anonymity of recorded responses for the questionnaire. Informed Consent A waiver of written consent was requested from the primary IRB for those interested in participating in the study. Individuals who used the QR or URL in the recruitment letter were directed on their personal electronic device to an online introductory page in which an IRBapproved information sheet, created by the primary researcher, regarding a summary of the study was displayed for review. Participants confirmed if they were under the age of 18 years, and if so, the mandatory parent or guardian permission was obtained before continuing. This was achieved via a yes or no response to a question directed towards the parent or legal guardian. Once achieved, the participant continued onto the study-specific material to anonymously respond to survey questions. Contact information of the primary researcher was available on this UPPER EXTREMITY DIFFERENCES 32 page in case participants or guardians had any questions, commentary, or concerns in which they wished to address before starting. Participants were also informed that the survey did not have a save-and-return option, yet participants could stop participating for any reason if they wished to do so. Data Collection Study data were collected and recorded through an anonymous survey using Redcap (Vanderbilt, n.d.). Each participant answered questions that did not contain any protected health information or allowed study personnel to determine a link between preliminary screening procedures and survey responses. Questions were divided into sections that consisted of basic demographic information and participant characteristics, assessments of body appreciation, selfesteem, and resilience, and an additional option for commentary. Data Management Survey data were housed in a secure Redcap (Vanderbilt, n. d.) database to which only approved research personnel had access. Recorded data were exported into an Excel file compatible for uploading into a program for statistical analysis and saved on the primary institutions secure network with password protection. All files and study documents were saved per the institutions IRB and clinical research standard operating procedures. Statistical Analysis All data were analyzed using descriptive and inferential statistics with IBM SPSS Statistics for Windows, Version 24.0 (IBM Corp., Armonk, NY). All tests were two-tailed with a set statistical significance level of less than .05. Normality of the data was determined using Shapiro-Wilk tests and visual inspection of normal Q-Q plots, histograms, and boxplots. Equality of variance was assessed using Levenes tests. Descriptive data were reported to summarize UPPER EXTREMITY DIFFERENCES 33 study participants. Normally distributed continuous data (current age, body mass index, number of surgeries, RSES score, and CYRM-R score) were reported as means and standard deviations. Frequencies and percentages were used to report gender, race, ethnicity, diagnoses, family history, and specificity of respective extremity involvement. Ordinal data (school grade, age at time of surgery, and BAS-2 score) and continuous data not normally distributed were reported as mode or median and interquartile range. Inferential statistics were conducted to investigate the specific research objectives of the study. To determine if there were significant differences between BAS-2, RSES, and CYRM-R scores between males and females, older (14-19 years) and younger (10-13 years) adolescents, and between single or bilateral extremity involvement, independent t tests, Mann- Whitney U tests, or Fishers exact tests were conducted dependent upon the distribution of data. Scores for the BAS-2 were rounded up to the nearest whole number with tenth place values less than five rounded down and tenth place values greater than or equal to five rounded up. Multiple linear regression analysis was conducted to determine if BAS-2, RSES scores, and other collected variables predicted a CYRM-R score. Variables selected as possible predictors were determined by bivariate analyses and the clinical expertise of the primary researcher. To be entered into the regression model a significance of .05 was required for comparison of differences and a correlation coefficient of at least .30 for measures of association. The enter method was used to identify significant predictor variables. Six assumptions for multiple regression, based on recommendations of Field (2017), were explored including: 1) presence of a linear relationship between the dependent variable and independent variables determined by visual inspection of a scatterplot of studentized residuals against unstandardized predicted values and partial regression plots; 2) independence of UPPER EXTREMITY DIFFERENCES 34 observations as determined with the Durbin-Watson statistic being close to 2.0; 3) lack of multicollinearity based on r < .85 and tolerance values above .20 among independent variables; 4) presence of homoscedasticity determined by visual inspection of studentized residuals against unstandardized predicted values; 5) no significant outliers determined by lack of cases with greater than + 3 standard deviations for standardized predicted values and standardized residuals; and 6) presence of normally distributed residuals determined by visualization of the standardized residual histogram and the probability plot. Results Out of 186 patients who met the inclusion criteria at the institution, a total of 31 responded to the survey (response rate = 16.67%). Participant demographics and characteristics are described in Table 1. The mean age (standard deviation, minimum- maximum) of respondents was 13.03 years (1.92, 10-17). Respective diagnoses per extremities are described in Table 2. No respondents reported a diagnosis of ectodacytly, brachydactyly, camptodactyly or clinodactyly. Fifteen participants (48.4%) reported a single surgical intervention as a component of their treatment, while 16 (51.6%) reported more than one. The initial surgical intervention occurred under 2 years of age for 55% of left extremities and 47.5% of right extremities, and over 2 years of age for 45% of left extremities and 52.6% of right extremities. Body Appreciation, Self-Esteem, and Resilience Among Gender, Age, and Extremity Involvement A total of 31 participants completed the BAS-2 with averaged scores ranging from a minimum of 2.9 to a maximum of 5.0. The median (interquartile range) for the cohort was 4.5 (2.1). After rounding the scores to the nearest whole number, there was one score of sometimes, 14 scores of often and 16 scores of always. The sometimes score was UPPER EXTREMITY DIFFERENCES 35 combined with the often scores resulting in 15 (48.8%) of the participants reporting often and 16 (51.6%) reporting always. To determine if there was a significant difference in body appreciation between gender, age, and extremity involvement, as stated in the first study objective, Fishers exact tests were used. No statistically significant differences were found for each comparison, as detailed in Table 3. Twenty-nine participants completed the RSES with a mean (standard deviation) score of 33.03 (5.22). To determine if there was a statistical difference in self-esteem between gender, age, and extremity involvement, as stated in the second study objective, parametric statistical t tests were used for each comparison. Both gender and extremity involvement were not found to be statistically significant. However, scores between young and old adolescents were found to be statistically significant, as detailed in Table 4. One participant completed the RSES but did not provide an age; this score was removed from the respective analysis as it was unable to be stratified. Twenty-nine participants completed the CYRM-R with a median (interquartile range) score of 78.00 (12.00). To determine if there was a statistical difference in resilience between gender, age, and extremity involvement, as stated in the third study objective, both parametric t tests and non-parametric Mann-Whitney U tests were used for each comparison of CYRM-R scores. No statistically significant differences were found for each analysis, as detailed in Table 5. One participant did not provide an age and was removed from the respective analysis due to the inability to stratify into an age category. Additionally, one respondents CYRM-R score was removed from all statistical analyses of resilience as it was classified as an outlier. This score, when included, significantly skewed data and produced inconsistent results. Taking into consideration the small sample size of the UPPER EXTREMITY DIFFERENCES 36 adolescent cohort, it is limited in analysis and therefore believed by the researcher justified for artificial removal. Variables Predicting Resilience To determine what variables might predict the dependent variable of resilience, as stated in the fourth study objective, bivariate analysis was performed in preparation for multiple regression modeling. No significant differences in adolescent demographic and characteristics were found when compared to CYRM-R scores; therefore, none were added as possible predictors. There were only two independent variables that had correlation coefficients greater than .30, BAS-2 scores and RSES scores, so they were included in the analysis. Multiple regression analysis was conducted using the enter method to determine if CYRM-R scores could be predicted by BAS-2 and RSES scores. All assumptions were met as detailed in the Method section. The two-predictor linear regression model was statistically significant, F(2, 25) = 9.96, p < .001; R2 = .44, and explained 44.3% of the variance. Only one predictor, BAS-2 score, significantly added to the model. The predicted CYRM-R for adolescents who answered always on the BAS-2 was 7.27 points greater than the predicted score for adolescents who answered often on the BAS-2. Regression coefficients and standard errors can be found in Table 6. Commentary Once participants completed all demographic and patient-reported outcome surveys, they were provided the option to include additional commentary regarding their diagnosis and treatment. Five respondents expressed feeling confident despite their anomaly, including the desire to share their stories with their peers, and were not teased about their differences. One UPPER EXTREMITY DIFFERENCES 37 respondent expressed they may occasionally experience pain and at that time wish they still had their extra fingers. Discussion PSFs greatly contribute to the well-being of adolescents as they develop through stages of physical and mental growth. Adolescents with congenital differences of the hand or upper extremity may be more vulnerable to these periods of growth due to their anatomical differences and the frequency of medical attention as young children. The primary focal points within the literature evaluating health outcomes for this cohort are placed on functional capabilities. As a result, factors explicitly associated with mental health may be overlooked. Therefore, the purpose of this study was to explore the PSFs of body appreciation, self-esteem, and resilience in adolescents with a surgically corrected CHUE malformation and ascertain if these PSFs are influenced by gender, age, and extremity involvement. Additionally, this study aimed to determine variables that significantly predicted resilience within the population. Body Appreciation No statistically significant differences were found between BAS-2 scores and age, gender, or extremity involvement within this cohort of adolescents, suggesting that these variables do not influence the PSF of body appreciation. As all respondents initiated surgical treatment before the age of four years, 42% of participants before the age of two, a sense of aesthetic acceptance regarding the CHUE may initiate early and continue to grow over time, allowing subjects to become increasingly comfortable amid social circumstances or physical changes (Cartwright et al., 2015). The primary clinical goal of intervention is to improve and maintain the functional capacity of the affected extremity (Bae et al., 2018). This goal, established at initial treatment UPPER EXTREMITY DIFFERENCES 38 and continued through follow-up, may act as a continuing reminder that the assessment of the physical appearance of ones hand or upper extremity ailment is inferior. As such, an adolescent participant may not equate the same merit of the extremity to aesthetic elements of personal appearance frequently sensitized during this period of growth, such as facial features, bodily proportions, hair, and clothes (Quittkat et al., 2019). Kelly et al. (2016) concluded that continued discussions regarding body image would be an integral component of treatment that may promote more favorable outcomes for patients undergoing care for hand or upper extremity differences. Similarly, Franzblau et al. (2015) described the importance of having resources to manage stress or coping associated with such an ailment. The non-significant results regarding body appreciation within this cohort may reflect the treating institutions approach to clinical care. All subjects were treated at the same institution, within the same department, by two leading pediatric orthopedic surgeons specifically specializing in hand and upper extremity ailments during the specified time frame. The department culture and administration of clinical care may have provided support in which a thorough discussion of anticipated changes from surgical intervention occurred, thus promoting the assessment concepts of acceptance, favorable opinion, and respect of ones body (Tylka & Wood-Baralow, 2015). Many of the institutions core values align with prioritizing families and ensuring providers incorporate concepts of integrity, education, and accountability within their care (Scottish Rite for Children, 2021). Additionally, at sequential follow-up visits, each visit may have reinforced the concepts of acceptance and comfort regarding the anomaly as pediatric providers assess physical improvement and engage in conversation directly with the patient. When initially screening, eligible patients with more than one surgical case (38% of UPPER EXTREMITY DIFFERENCES 39 respondents) recorded may have valued the clinical care enough to continue with the additional surgical case and approach to treatment. Self-Esteem No significant differences were found between genders on self-esteem scores, indicating that gender does not influence the self-esteem of those with a surgically corrected hand difference in this cohort. Previous literature has found that females frequently report lower selfesteem during adolescence compared to their male counterparts (Frost & McKelvie, 2004). Yet, results of this study suggest both genders may value and find worth in their hand differences in the same manner. Similarly, score comparisons between single and bilateral extremity involvement were not statistically significant, suggesting that extremity involvement does not differ in self-esteem within the cohort. Participants may not believe their extremity involvement limits their abilities, or they may find self-esteem through a lens of capability. If they are capable of completing a task sufficiently, this equates to value and worth. Statistically significant differences were found on self-esteem scores between the young (greater) and old adolescent (lower) age groups, with the older group averaging a lower RSES score (less self-esteem), indicating age may play a factor in self-esteem among those with a surgically corrected hand difference. Adolescents in the older age stratification may be exposed to more independent social circumstances, such as dating, a first job, or transitioning into a larger school, events in which they may more frequently reflect on their abilities or worth and compare themselves to peers (Ghandour et al., 2019). Having a surgically corrected anomaly may be a component in this reflection or comparison and consequently, directly impact self-esteem resulting in a lower score. Respondents stratified in the early adolescent age group may still be limited in their social structures or independence, as no younger adolescents reported being in UPPER EXTREMITY DIFFERENCES 40 high school. With higher parental or teacher monitoring commonly associated with younger education and associated extracurricular activities, factors associated with self-esteem, such as worth or abilities, may more frequently be re-assured by their caregiver than in older years. Resilience In this sample population, no statistically significant differences were found on CYRM-R scores between age, gender, or extremity involvement, suggesting that these variables do not influence the capacity to utilize and negotiate psychological, social, cultural, and physical resources to sustain a sense of well-being during circumstances of adversity (Resilience Research Centre, 2016, para. 4). As respondents with a corrected CHUE anomaly gradually progress in social independence though their adolescent years, their perception of any limitations, restrictive beliefs, or adversity associated with their anatomical difference may frequently evolve. Opportunities may present themselves in which an adolescent is allowed to build skills or adapt, such as from academic pursuits, social activities, or extracurriculars, and thereby promote elements of resilience. They may have fewer expectations about their decisions or take more risk and still manage to cope with the outcome easily (Tymula et al., 2012). Adolescents with a CHUE difference may have developed traits of resourcefulness and self-awareness by knowing when faced with a difficult situation, its within their best interest to take stock and utilize available tools or resources. With medical care initiated at an early age, it likely involved an adult or community support system that established a level of trust in which an adolescent would feel comfortable enough to seek guidance on how to proceed and move forward. Additionally, regardless of age, gender, or extremity, a respondent may generally have more optimism towards their unique experience with a corrected CHUE difference. The median CYRM-R score of the cohort was high, and of participants that provided commentary, all responses were overall UPPER EXTREMITY DIFFERENCES 41 positive in nature. Additionally, early treatment may also have established a strong sense of empathy for a health condition, allowing the adolescent to learn how to relate with others more quickly than peers without a congenital or physical difference. In doing so, this may equate to stronger peer-to-peer relationships and feelings of inclusion despite their extremity difference (Stinson et al., 2016), potentially helping to build hardiness that follows into adulthood. Prediction of Resilience Resilience was predicted by variables of BAS-2 score and RSES score. Respondents with a surgically corrected CHUE anomaly who had strong body appreciation and high self-esteem were predicted to additionally have strong resilience. These results are reflective of factors discussed in the literature and associated with the Protective Factor Model of Resilience in Resilience Theory (Ledesma, 2014; Ungar, 2004). Both strong body appreciation and self-esteem may act as internal variables that allow the participant to mediate any limitations associated with a CHUE. When a respondent holds favorable acceptance of their surgically corrected CHUE anomaly as an inclusive body part, and additionally finds value and worth in their difference, they are consequently protecting themselves from feeling insecure or inadequate in their abilities. Exposure to rigid media portrayals of beauty, or circumstances that require strong selfconfidence, may not be portrayed by the respondent as being unachievable, and their CHUE is not seen as an element that holds them back. Results from this study indicate that such skills found in the PSFs of body appreciation and self-esteem contribute to the necessary abilities needed to attain strong resilience. Limitations Primary limitations for this study include institutional recruitment and limited sample size. This study used a convenience sample from a facility that specializes in the treatment of UPPER EXTREMITY DIFFERENCES 42 pediatric orthopedic conditions, which may not be representative of the population of adolescents who undergo surgical correction for a CHUE anomaly. Clinical care and treatment may include elements specific to the institution that influence responses to body appreciation, self-esteem, and resilience. Additionally, the sample size of the study is limited despite the awareness of an anticipated response rate for a previous study at the same institution (Butler et al., 2017). Having a smaller sample size to achieve respective study objectives may have provided low statistical power or reproducibility. Additionally, the smaller size of the sample limits diversity among clinical diagnoses and the collected variable related to ethnicity. Implications and Future Research This research utilized reliable and validated patient-reported outcome assessments in a sample of a population not previously reported or compared in the literature. The results contribute to the knowledge and value of evaluating PSFs in relation to early surgical intervention and long-term outcomes within a pediatrics population exhibiting congenital differences. Findings provide insight into factors that protect against a specific physical adversity that may be perceived as limiting during a stage of growth frequently described as more vulnerable than others (McElhaney et al., 2018). With age being a variable that can significantly influence self-esteem, and PSFs of body appreciation and self-esteem predicting resilience, health care institutions should ensure clinical care takes steps to acknowledge an adolescents perceptions of self-worth, value, and abilities to navigate resources independently. Conclusions from this research may be used to tailor patient care to individuals or families who may require a stronger supportive framework during treatment or need more resources to ensure the best outcomes are achieved for the patient and their mental health. UPPER EXTREMITY DIFFERENCES 43 Future research should focus on ways to attain a larger and robust sample size. This would allow for more stratification among collected variables, such as by specific diagnosis, ethnicity, or location of congenital extremity concern, providing stronger evidence for conclusions resulting from comparative analysis. Additionally, a larger sample size would offer deepened exploration of age in relation to self-esteem and predictors of resilience, findings significant within this study. One approach would be to collaborate with other institutions that specialize in surgical treatment of CHUE in the pediatric population. Not only would this provide an increased sample size but provide more robust diversity among the population in terms of demographics and diagnoses. Future research may also focus on the PSF changes observed from pre-adolescence into adolescence and potentially early adulthood. A longitudinal cohort approach would allow researchers to understand changes in PSFs experienced by participants as they grow into adulthood and attain more responsibilities. Factors associated with body appreciation, selfesteem, and resilience are likely to fluctuate depending upon the internal or external expectations of the participant, in which the view of their CHUE may also change. Finally, future research should incorporate a comparison of patient-reported outcome measures used in this study with others frequently used in pediatric orthopedic clinical care and published in the literature for this population, such as PROMIS or PODCI. The comparison would offer insight regarding whether encompassing measurement tools equate to the same sensitivity as the BAS-2, RSES, or the CYRM-R, and result in similar study objective findings. Conclusion Understanding the relationship between PSFs and congenital health conditions in the pediatric population is critical when attempting to achieve optimal outcomes of treatment. UPPER EXTREMITY DIFFERENCES 44 Adolescents with a CHUE that receive early surgical intervention are exposed to greater medical care than their peers and may be more sensitive to the acceptance of their anomaly, however, results of this study suggest they do not find their condition limiting with respect to gender or extremity involvement. Exploring the PSFs of body appreciation, self-esteem, and resilience within this sample indicated that gender and extremity involvement do not appear to impact these PSFs. Age, however, is a variable that may play an integral role in self-esteem, and both PSFs of body appreciation and self-esteem are strong indicators for high resilience. Patients who appreciate their anomaly, find confidence in their abilities, and attain traits that promote hardiness, are speculated to have the best long-term outcomes from surgical intervention. UPPER EXTREMITY DIFFERENCES 45 References Andersson, G., Gillberg, C., Fernell, E., Johansson, M., & Nachemson, A. (2011). Children with surgically corrected hand deformities and upper limb deficiencies: Self-concept and psychological well-being. Journal of Hand Surgery European Volume, 36(9), 795-801. https://doi.org/10.1177/1753193411412869 Albert, D., Chein, J., & Steinberg, L. (2013). The teenage brain: Peer influences on adolescent decision making. Current Directions in Psychological Science, 22(2), 114-120. https://doi.org/10.1177/0963721412471347 Auerbach, J. D., Lonner, B. S., Crerand, C. E., Shah, S. A., Flynn, J. 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Spine, 36(9), 741745. https://doi.org/10.1097/BRS.0b013e3181e0f034 UPPER EXTREMITY DIFFERENCES 61 Table 1 Participant Demographics and Characteristics (N = 31) Item Gender Race Ethnicity Adolescent Age Group Body Mass Index Education Family History Extremity Involvement N (%) Male 16 (51.6) Female 15 (48.4) White 21 (67.7) Not White 8 (25.8) Not Reported 2 (6.5) Hispanic or Latino 7 (22.6) Not Hispanic or Latino 23 (74.2) Not Reported 1 (3.2) Young 19 (61.3) Old 10 (32.3) Not Reported 2 (6.4) Healthy 15 (48.4) Not Healthy 11 (35.5) Not Reported 5 (16.1) Middle School 22 (71.0) High School 9 (29.0) No 22 (71.0) Yes 6 (19.4) Not Reported 3 (9.6) Left 11 (35.5) UPPER EXTREMITY DIFFERENCES 62 Right 9 (29.0) Both 11 (35.5) UPPER EXTREMITY DIFFERENCES 63 Table 2 Participant Clinical Diagnosis by Extremity Diagnosis N (%) Right Left Polydactyly 6 (30.0) 7 (31.8) Syndactyly 3 (15.0) 4 (18.2) 0 1 (4.6) Overgrowth or Vascular Malformation 2 (10.0) 2 (9.1) Radial or Ulnar Dysplasia 3 (15.0) 3 (13.6) Thumb Hypoplasia or Amyoplasia 1 (5.0) 3 (13.6) I do not know 5 (25.0) 2 (9.1) Total Extremities 20 (100) 22 (100) Symbrachydactyly UPPER EXTREMITY DIFFERENCES 64 Table 3 Comparison of Body Appreciation Scale-2 by Gender, Age, and Extremity Characteristic Gender Age Extremity Often Always N (%) N (%) p Male 6 (37.5) 10 (62.5) .289 Female 9 (60.0) 6 (40.0) Young a 8 (42.1) 11 (57.9) Old b 7 (70.0) 3 (30.0) Single 10 (50.0) 10 (50.0) Bilateral 5 (45.5) 6 (54.5) Note. a Young = aged 10-13 years. b Old = aged 14-19 years. .245 1.00 UPPER EXTREMITY DIFFERENCES 65 Table 4 Comparison of Rosenberg Self-Esteem Scale by Gender, Age, and Extremity Characteristic Gender Age Extremity N M (SD) p Male 15 34.0 (4.2) .311 Female 14 32.0 (6.1) Young a 18 35.1 (3.7) Old b 10 30.8 (4.4) Single 19 33.1 (5.3) Bilateral 10 32.9 (5.3) Note. a Young = aged 10-13 years. b Old = aged 14-19 years. * p < .05 .011 * .922 UPPER EXTREMITY DIFFERENCES 66 Table 5 Comparison of Child and Youth Resilience Measure-R by Gender, Age, and Extremity Characteristic Gender a Age Extremity N M (SD) p Male 14 80.0 (10.0) .112 Female 14 74.5 (11.0) Young b 18 77.7 (6.7) Old c 9 73.1 (7.3) Single 18 77.2 (6.1) Bilateral 10 74.7 (8.5) .116 .371 Note. a Median and interquartile range reported. b Young = aged 10-13 years. c Old = aged 1419 years. UPPER EXTREMITY DIFFERENCES 67 Table 6 Results of Multiple Linear Regression for Predictors of Resilience Predictors B SE 95% CI Lower 95% CI Upper t p Constant 60.52 6.82 46.47 75.57 BAS-2 Score 7.27 2.18 2.78 11.77 3.33 .003* RSES Score 0.36 0.21 -0.08 0.80 1.69 .103 Note. BAS-2 = Body Appreciation Scale-2; RSES = Rosenberg Self-Esteem Scale * p < .05 UPPER EXTREMITY DIFFERENCES 68 Appendix A Permission of Use for the Body Appreciation Scale-2 (BAS-2) The following is a screenshot stating the BAS-2 is available for use in research studies (Tylka & Wood-Barcalow, 2015). UPPER EXTREMITY DIFFERENCES 69 Appendix B Permission of Use for the Rosenberg Self-Esteem Scale (RSES). The following is a screenshot stating the RSES is available for use in research studies (University of Maryland, 2021). UPPER EXTREMITY DIFFERENCES 70 Appendix C Permission of Use for the Child and Youth Resilience Measure (CYRM-R) The following is a screenshot stating the CYRM-R is available for use in research studies (Resilience Research Centre, 2016). UPPER EXTREMITY DIFFERENCES 71 Appendix D Recruitment Letter UPPER EXTREMITY DIFFERENCES 72 Appendix E Information Sheet and Entry to Survey Platform  ...

... Characteristics Associated with Occupational Performance in Veterans Who Have Sustained a Traumatic Brain Injury 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: Jamie K. Basch Copyright December 9, 2021 By: Jamie K. Basch, M.S., OTR/L All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ______________________________ Steven Wheeler, PhD, OTR/L, FAOTA, CBIS Committee Member ______________________________ Elizabeth S. Moore, 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 ______________________________ Running head: OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI Characteristics Associated with Occupational Performance in Veterans Who Have Sustained a Traumatic Brain Injury Jamie Basch Cincinnati VA Medical Center OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 2 Abstract Traumatic brain injury (TBI) is a significant health concern in the United States and is often considered the signature injury of Operations Enduring and Iraqi Freedom. The majority of individuals who sustain a mild TBI ultimately recover completely, though some have lasting deficits. For occupational therapy to effectively develop and implement intervention plans, more knowledge is necessitated regarding the characteristics associated with occupational performance in veterans who have sustained a TBI. Using a non-experimental retrospective correlational design, this study examined five primary objectives to examine the relationship between different characteristics and occupational performance in veterans with TBI. A total of 21 veterans were included over five years. Statistically significant correlations were found between community participation and life satisfaction and between future anticipated role participation and adjustment and ability subscales of MPAI-4. Increased awareness and understanding of occupational therapys role in the development of client-centered and goal-directed intervention to address community participation, ability, and adjustment following TBI is indicated to enhance veteran quality of care and life. Keywords: traumatic brain injury, veteran, occupational performance, retrospective OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 3 Table of Contents Introduction ..................................................................................................................................... 5 Literature Review............................................................................................................................ 8 Method .......................................................................................................................................... 13 Study Design ............................................................................................................................................. 13 Instruments ................................................................................................................................................ 15 Procedures ................................................................................................................................................. 18 Data Analysis ............................................................................................................................................ 19 Results ........................................................................................................................................... 19 Discussion and Conclusion ........................................................................................................... 22 Appendix: Criteria for TBI Severity ............................................................................................. 46 OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 4 List of Tables Table 1: Descriptive Statistics for Demographics and Participant Characteristics....................... 40 Table 2: Correlations Between Participant Characteristics and Occupational Performance ........ 42 Table 3: Correlations Between Community Integration and Occupational Performance ............ 43 Table 4: Correlations Between Role Participation and Occupational Performance ..................... 44 Table 5: Correlations Between Satisfaction with Life and Occupational Performance ............... 45 OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 5 Characteristics Associated with Occupational Performance in Veterans Who Have Sustained Traumatic Brain Injury Traumatic brain injury (TBI) is a significant health care concern in the United States, with nearly 3 million associated hospital encounters in 2014 (Centers for Disease Control and Prevention [CDC], 2015) and almost 61,000 deaths annually (CDC, 2021a). Traumatic brain injury may result in long-standing and chronic deficits in behavior and cognition (McKee & Robinson, 2014). As many as 19.6% (Theeler, Flynn, & Erickson, 2010) to 30% (McRea et al., 2008) of service members returning from conflicts in Iraq and Afghanistan have sustained a TBI. This has resulted in TBI being considered the signature injury in this generation of veterans (Bagalman, 2011). In 2011 alone, 32,591 service members sustained a TBI (Bagalman, 2011). Of Operation Iraqi and Enduring Freedom veterans enrolled in care within the Veterans Health Administration in 2009, 6.7% were diagnosed with TBI (Taylor et al., 2012). In the past twenty years, over 430,000 military service members have sustained a TBI (CDC, 2021b). Care for these veterans costs at least four times that of non-TBI veterans and increased based on the complexity of the diagnosis and number of co-morbid conditions (Taylor et al., 2012). Although a large majority of individuals who sustained a mild TBI recover completely, there is a subset of individuals who have persistent difficulty with returning to pre-injury occupational performance levels and prior valued work roles capacity (Cooksley et al., 2018). Problem Statement Occupational therapy (OT) is a fundamental rehabilitation service with a primary aim to restore and optimize participation in meaningful occupations following TBI. Occupational therapy is uniquely equipped to address and mitigate the lasting impact on psychosocial, OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 6 behavioral, and emotional wellbeing following a TBI (Wheeler, Acord-Vira, & Davis, 2016). Although occupational therapists treat veterans with TBI, little is known about what factors are related to decreased occupational performance in this population. Purpose Statement The purpose of this study was to determine characteristics associated with occupational performance in veterans who have sustained a TBI. Research hypotheses. The following hypotheses were addressed by this study: Ho: There is no relationship between veterans characteristics and occupational performance following TBI. o HA: There is a relationship between veterans characteristics and occupational performance following TBI. Ho: There is no relationship between veterans perceptions of community integration and occupational performance. o HA: There is a relationship between veterans perceptions of community integration and occupational performance. Ho: There is no relationship between veterans perceptions of role participation and occupational performance. o HA: There is a relationship between veterans perceptions of role participation and occupational performance. Ho: There is no relationship between veterans perceptions of life satisfaction and occupational performance. o HA: There is a relationship between veterans perceptions of life satisfaction and occupational performance. OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 7 Ho: There is no relationship between veterans productive engagement and occupational performance. o HA: There is a relationship between veteran productive engagement and occupational performance. Significance of the Study The findings of this study will assist the OT field, rehabilitation professionals, and the health care system in establishing a greater understanding of occupational patterns and factors contributing to occupational performance following TBI. Results from this study may influence future research pursuits, such as understanding how veterans with TBI compare to the general population or the civilian population with TBI, which may result in a higher quality of care and tailored treatment specific to the veteran population. Ultimately, this study has broad potential implications for decreasing health care costs, increasing quality of life, and decreasing caregiver burden by equipping OTs with the knowledge base required to ensure the veterans return to valued roles in work, learning, and home. Definition of Terms To promote understanding of the study purpose and research hypotheses, the following terms are defined: Traumatic brain injury: a blow or jolt to the brain that impairs normal function. Severity can range from mild to severe or even penetrating; however, it is determined based on factors at the time of injury (Centers for Disease Control and Prevention, 2015). Veteran: any individual who served actively in any military branch and was discharged with any characterization other than dishonorable (Department of Veterans of Affairs, 2015). OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 8 Occupation: purposeful and meaningful activities that people may engage individually, in families, or within communities (American Occupational Therapy Association, Inc., 2019; World Federation of Occupational Therapy, 2019). Occupational performance: the dynamic experience of engaging in daily occupations within contexts (Baum & Law, 1997) Veteran characteristics: gender, age, race, etiology of TBI, branch of service, severity of TBI, number of TBIs sustained, amputee status, co-morbid mental health conditions (e.g., depression, generalized anxiety disorder, post-traumatic stress disorder), employment status, education level, availability of social supports (including marital status, family, friends), drug and alcohol use. Literature Review Since the onset of the Global War on Terror in 2001, 402,899 service members have sustained a TBI (Defense and Veterans Brain Injury Center, 2020). The cohort of service members deployed in recent operations in Iraq and Afghanistan is unique from others in that this is the first time in United States history that sustained and prolonged combat operations have not relied on a conscription (draft), resulting in multiple individual deployments and cycles of reintegration (Plach & Sells, 2013; Sollinger, Fisher, & Metscher, 2008). Unlike their civilian counterparts, service members who deployed in support of recent combat operations lacked immediate medical attention, standardized protocol for treatment, and faced delays in medical care (Cogan, Haines, Devore, Lepore, & Ryan, 2019; Davenport, 2016). Veterans of conflicts in support of Operations Iraqi and Enduring Freedom are more likely to be diagnosed with mild TBI due to blast exposure (Davenport, 2016). As a result, these veterans are predisposed to OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 9 experience an increase in psychological stress and chronic difficulties within areas of occupation (Cogan et al., 2016). Occupational Therapy Occupational therapy is a fundamental rehabilitation service that uses a holistic and individualized approach to remediate, restore, or compensate for illness or injury in order to optimize participation in meaningful daily activities, known as occupations (American Occupational Therapy Association [AOTA, 2021]). Following TBI, occupational therapists can specifically facilitate return to an individuals pre-injury life roles, function, and overall quality of life (Pogoda, Levy, Helmick, & Pugh, 2017). As part of an interdisciplinary team, occupational therapists can optimize care of individuals with mild TBI through the identification of impacted performance domains (Harris et al., 2019) which may include valued occupations, contexts, performance patterns, performance skills, and client factors (AOTA, 2020). There has been an influx of veterans and service members experiencing TBI as a result of conflicts in Iraq and Afghanistan. Despite this, the literature is scant as to which factors contribute to occupational performance in the veteran population. Further, veterans experience a constellation of symptoms related to physical, affective, cognitive, and emotional domains (Schneiderman, Braver, & Kang, 2008; Lippa, Pastorek, Benge, & Thornton, 2010). These symptoms are reliant on rehabilitation professionals to possess critical knowledge to develop targeted interventions focused on quality of life, community reintegration, and life satisfaction to maximize return to valued roles, occupations, and restoration of pre-injury independence (Radomski, Davidson, Voydetich, & Erickson, 2009). Non-Veterans OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 10 Using a single case study of a non-veteran male, an OT intervention across all settings (hospital, home, and community) was explored using relevant evidence to restore the individual to his desired occupations following a severe TBI (Wheeler, Acord-Vira Arbesman, & Lieberman, 2017). The occupational therapist in this intervention utilized the Goal Attainment Scale, Canadian Occupational Performance Measure (COPM), and Satisfaction with Life Scale (SWLS) to identify patient self-directed goals and to assess progress toward these goals. The COPM and SWLS measures indicated persistent occupational performance deficits in communication, meal preparation, financial management, and motivation, resulting in decreased self-perceived life satisfaction (Wheeler et al., 2017). Doig, Fleming, Cornwell, and Kuperss (2009) qualitative study explored the importance of client-centered goal setting in communitybased TBI intervention. The development of personalized goals was perceived to provide needed structure in the rehabilitation plan of care, increased motivation, goal-ownership, and increased self-awareness (Doig et al., 2009). Collaborative goal setting contributes to the development of individualized interventions that facilitate and support participation in meaningful occupations in individuals with TBI. Pais, Ponsford, Gould, and Wong (2019) explored the perception of valued living in individuals who sustained a moderate-to-severe TBI. Perception of valued living remained low for the first three years following TBI (Pais, Ponsford, Gould, &Wong, 2019). However, this perception shifted more positively at three to five years post-injury. Occupational therapy intervention that focuses on adapting or modifying valued activities, contexts, and roles to the individuals capability has high yield potential, especially within the first three years following brain injury when the perception of valued living is lowest (Pais et al., 2019) and while the risk of suicide is elevated as compared to the non-TBI population (Mackelprang et al., 2014). OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 11 Veterans Sustaining blast-related mild TBI may have confounding symptomology that influences the OT plan of care. Among service members hospitalized for TBI, as many as 25.2% may develop a long-term disability (Agimi, Marion, Schwab, & Stout, 2021). Persistent postconcussive (PPC) symptoms are highest in the cognitive domain and headaches. Persistent postconcussive symptoms appear significantly protracted in duration for veterans sustaining blastrelated TBI compared to clinical expectation (Lippa et al., 2010) as rated on the Neurobehavioral Rating Scale. This deviation is potentially due to the overlap of PPC symptoms in untreated posttraumatic stress disorder (PTSD). The OT professional must ensure the treatment of PTSD-related symptoms to optimize the individuals capability to participate in an OT intervention. Nonetheless, the occupational therapist is charged with treating both the individual despite diagnosis (Radomski et al., 2009) and understanding the myriad of contributing factors to occupational performance, including context, current function, and the varying psychosocial factors experienced by veterans. The overall demographics for blast and non-blast TBI exposure are predominantly male (96.2%), with a high school diploma (55.8%), and service in the U.S. Army (51.3%). Understanding such characteristics and their influence on occupational performance has potential utility in the creation of relevant OT interventions that are culturally sensitive, evidence-based, and effective. Anxiety, irritability, sleep difficulty, forgetfulness, and headaches (Mortera, Kinirons, Simantov, & Klingbeil, 2016, para. 7) were reported in a shocking 90% of Operation Enduring or Iraqi Freedom veterans enrolled in a VA Polytrauma Network Site. However, not all veterans in the sample had been formally diagnosed with TBI. Further associated factors posing a barrier to returning to productive occupation included race and depressive feelings (Mortera et al., OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 12 2016). The need for increased awareness of factors contributing to occupational performance and return to valued roles is warranted in veterans who have sustained a TBI. In a predominantly male younger strata (ages 20-29 years old) of veterans (N = 30), Plach and Sells (2013) used a mixed-methods design to explore daily life challenges, health challenges, and motivation for participation in occupations using the COPM. Although TBI was diagnosed in an unspecified number of veterans, it was not specifically an inclusion criterion even though a consideration alongside PTSD, depression, and alcohol use (Plach & Sells, 2013). Plach and Sells (2013), using COPM results, identified the following top five performance challenges: relationships (77%), school (70%), physical health (50%), sleeping (37%), and driving (33%). The authors suggested that understanding contributing factors to occupational performance, as well as perceived occupational challenges, can assist OT clinicians in developing manualized approaches to intervention in the veteran population (Plach & Sells, 2013). Despite combat trauma, some veterans with PTSD have a higher level of function than other combat veterans. McCaslin et al. (2019) explored modifiable factors that contributed to these higher levels of function. Although the study by McCaslin et al. (2019) focused primarily on veterans diagnosed with PTSD, it is widely accepted that TBI and PTSD are co-morbid conditions (Tanev, Pentel, Kredlow, & Charney, 2014). Factors contributing to increased performance and functional capacity include sleep, optimistic outlook, high level of social support, and decreased alcohol intake (Tanev et al., 2014). Understanding contributory factors in PTSD veterans may assist the occupational therapist in understanding, developing, and justifying targeted interventions that increase social interaction, promote sleep hygiene, optimize emotional regulation, and ensure stress and anxiety reduction. OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 13 Following eight weeks of residential treatment for PTSD and TBI utilizing an interdisciplinary approach including occupational therapy, vocational rehabilitation, and neuropsychology, significant improvements in both occupational performance and satisfaction were noted (Speicher, Walter, & Chard, 2014). In conjunction, a reduction in depressive and post-traumatic symptoms was obtained (Speicher, Walter, & Chard, 2014). Conclusion The lasting effects of TBI on occupational participation and performance patterns in the veteran population are complex and, at present, are not well understood. Despite rehabilitation efforts, veterans with TBI describe having an average of three unmet rehabilitation needs (Caplan et al., 2021). By identifying correlations between varied factors (e.g., the severity of TBI, time since injury) and veteran self-perception in such domains as life satisfaction, role and community participation, and community integration, the OT profession will be better equipped to develop targeted assessments and interventions to enhance occupational participation and meet veteran needs. Further, this study will set the foundation for more focused research on the efficacy of OT interventions for the veteran TBI population. Method Study Design This study was non-experimental using a retrospective correlational design. The correlational design was appropriate (Cottrell & McKenzie, 2011) as the study's primary aim was to further explain the characteristics of veterans who have sustained a TBI and their relationship to community integration, role participation, and life satisfaction using clinically indicated measures. The study was conducted over four months following approval from the Institutional OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 14 Review Board (IRB) of the University of Cincinnati and the Cincinnati Veterans Affairs Medical Center (VAMC), IRB #2020-1027. Setting The Cincinnati VAMC is level 1(b) complexity and consists of a two-division campus in Cincinnati, Ohio, and Fort Thomas, Kentucky. Together, these two divisions serve a total of 15 counties in Ohio, Kentucky, and Indiana. The facility is a regional referral center for PTSD. The campus at Fort Thomas, Kentucky, houses a PTSD residential program for men and women and a PTSD/TBI residential program. Participants and Recruitment Participants. Cohort lists of veterans currently or previously enrolled in care at the Cincinnati VAMC Fort Thomas Trauma Recovery Center (TRC) between the years 2016 to 2021 were considered for inclusion in the study. To be considered for inclusion in the study, veterans had to have a history of TBI as established during their initial clinical interview with a psychologist or neuropsychologist upon admission to the TRC. Individuals were excluded if they had a diagnosis of dementing disorder at the time of assessment (as established through chart review). A dementing disorder included a diagnosis of any of the following conditions: Alzheimers disease, vascular dementia (vascular neurocognitive disorder), and/or frontotemporal lobar degeneration (frontotemporal dementia; Hugo & Ganguli, 2014). An a priori sample size estimation was conducted using G*Power, version 3.1 (Faul, Erdfelder, Lang, & Buchner, 2007). The calculation was based on conducting a Spearman rho correlation between life satisfaction and occupational performance. The following parameters were used for the calculation, two-tailed test, alpha of .05, power of .80, and a large effect size of OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 15 0.50. From the calculation, it was estimated that a minimum sample size of 29 participants was needed. Data Collection The following demographic and participant characteristic data were extracted from the charts of veterans who met the inclusion criteria, including age, gender, branch of service, nature of TBI (severity, mechanism of injury, and service-relation), and education level. On admission to the TRC, all veterans with TBI complete the Mayo-Portland Adaptability Inventory, version 4 (MPAI-4), Community Integration Questionnaire (CIQ), Role Checklist, and Satisfaction with Life Scale (SWLS), for the primary purpose of gathering clinically-pertinent information as part of standard clinical care while participating in vocational rehabilitation programming. Defining and operationalizing variables. Traumatic brain injury severity was established based on criteria outlined by ONeil et al. (2013; see Appendix). MPAI-4 scores measured occupational performance. Community integration was operationalized using CIQ scores, role limitation using the Role Checklist, life satisfaction with SWLS scores, and productive integration using the CIQ Productive Activities subscale and employment status. Instruments Mayo Portland Adaptability Inventory. The MPAI-4 was designed to measure the long-term effects of problems associated with an acquired brain injury (Malec & Lezak, 2008). It consists of 30-items scored on a five-point Likert-like scale ranging from 0 to 4 and three subscales: Ability Index, Adjustment Index, and Participation Index (Malec & Lezak, 2008). The MPAI-4 has been found to have a moderate convergent validity when compared to cognitive measures, rs > .40 (Malec & Thompson, 1994) and strong internal consistency and reliability (Cronbach's = .86; Rasch person reliability = .88, Rasch item reliability = .99; between ability OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 16 and full scale) in a geographically diverse sample of adults with acquired brain injury (Malec & Lezak, 2008). MPAI-4 scores are converted to a T score (mean = 50, standard deviation = 10). A T score less than 30 indicates a good outcome, and a score above 60 indicates severe limitations (Malec & Lezak, 2008). Through Rasch analysis, in a sample of predominantly mild TBI military personnel (N = 404), a 21-question military version of the assessment was proposed, eliminating items related to physical abilities and some elements of community participation (Kean, Malec, Cooper, & Bowles, 2013). This measure may be completed by the provider, patient, or significant other; however, the veteran will be the sole entity completing the measure for this study. Community Integration Questionnaire. The CIQ is the most widely used and studied measure of community integration in the TBI population (Reistetter & Abreu, 2005; Stiers et al., 2012; Zhang et al., 2002). The CIQ contains 15 questions, with a total score ranging from 0 to 29 (Dijkers, 2000). A score of 29 indicates maximum community integration. There are three subscales including home integration, social integration, and productive activities (Dijkers, 2000). The CIQ can be completed through self-administration, telephone, or in-person interview (Zhang et al., 2002). Normative data on the CIQ was established by Zhang et al. (2002) across subscales with a total mean (standard deviation) score of 11.95 (4.31). The CIQ has excellent interrater reliability for patients and family members across all three subscales (r = .74 to .96, p < .01) and is generally deemed both a reliable and valid measure (Willer, Ottenbacher, & Coad, 1994). Willer et al. (1994) established strong test-retest reliability (N = 16) when the CIQ was initially administered to TBI patients and their respective families and/or caregivers and then re- OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 17 administered 7 to 10 days later (patients r = .91, family r = .97). Zhang et al. (2002) also found strong test-retest with interclass correlation coefficients (ICC) ranging from .83 to .93 in a predominantly severe TBI sample (N = 70), while Ocampo, Dawson, and Colantonio (1997) found the overall ICC to be .68 in a TBI sample, with the highest ICC score of = .84 in the productivity domain. Responsiveness was established in a TBI population (age 18-50 years) at initial discharge from an acute hospital setting and at one year; the smallest detectable difference was 6.18 with a percentage possible range of 20.6 (van Baalen et al., 2006). The Role Checklist. The Role Checklist consists of two parts. The first part ascertains whether the individual ever performed 1 of 10 roles in the past, performs them presently, or anticipates participation in the future. The second portion of the Checklist is a subjective assessment of whether the role is not valuable at all to very valuable (Scott, McKinney, Perron, Ruff, & Smiley, 2019). In a non-TBI population consisting of occupational therapists and occupational therapy students, utilizing Cohens kappa, the measure demonstrated strong (k = .74) to excellent (k = .94) test-retest reliability (Scott et al., 2019). For the purposes of this study, the number of past, present, and anticipated future roles will be totaled for each respective category. Only the first part of the Role Checklist was used in the analysis. Satisfaction with Life Scale. The SWLS is a subjective self-report of wellbeing that consists of five items ranked on a seven-point Likert-like scale (Diener, Emmons, Larsen, & Griffin, 1985) and is generally considered a valid and reliable measure (Jacobsson & Lexell, 2016). A score of 20 indicates neutral satisfaction with life. A meta-analysis of 60 studies related to the reliability of the SWLS indicates an overall mean Cronbach's =.78 across the literature (Corrigan et al., 2013). The SWLS was found to have strong convergent validity (r = -.72) when compared to the Beck Depression Inventory in prisoners and individuals in psychiatric distress OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 18 (Pavot & Diener, 1993). This measure has also demonstrated strong convergent validity with the Life Satisfaction Index-A (r = .81) and moderate to strong convergent validity with the Philadelphia Geriatric Center Morale Scale (r = .65 - .75) (Pavot, Diener, Colvin, & Sandvik, 1991). Strong internal consistency and test-retest reliability at two months were established in a non-TBI sample, Cronbach's = .87 and test-retest reliability correlation = .82 (Diener et al., 1985). In a predominantly geriatric (mean age = 74 years, SD = 8.97), low income sample, Pavot, et al. (1991) found strong test-retest reliability r = .84 with good internal consistency Cronbachs = .85. Though, as time since administration increased, test-retest reliability decreased at five year-intervals (r = .51, p < .001) (Fujita & Diener, 2005). Procedures Data entry and storage. Archival and demographic data were extracted from charts of veterans who met inclusion criteria. All data were deidentified by randomly-generated participant numbers. Paper copies of assessments were stored in a locked file cabinet accessible only to individuals involved in the study, located in a locked room at Fort Thomas Division. At the end of the study, data were deidentified and held by the Cincinnati VAMC in room B139. The final data set did not include any identifying information. Names of individuals identified for this archival study and code numbers are kept in a separate electronic file on the institutions S drive in a password-protected file and folder, only accessible by study staff. Destruction of all research records pertaining to this study will be in accordance with the Department of Veterans Affairs and University of Cincinnati record retention schedule. No electronic copies of assessments were used for this study. OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 19 Data Analysis Data were analyzed using IBM SPSS Statistics for Macintosh, Version 28 (IBM Corp., Armonk, NY). The Shapiro-Wilk test was used to analyze normality. In addition, data distributions were assessed using P-P plots, histograms, and skewness and kurtosis values. All tests were two-tailed, and an alpha level of less than .05 was considered to be statistically significant. Descriptive statistical analyses were conducted to describe the sample, including demographic data such as gender, age, source TBI, and military service-connection of TBI, education level, and severity of TBI. In addition, descriptive statistics were conducted for all outcome measures. Nominal and ordinal data are reported as frequencies and percentages, while normally distributed interval and ratio data are reported as means and standard deviations. Nonnormally distributed interval and ratio data are reported as medians and interquartile ranges. To determine if there were relationships between occupational performance and veteran characteristics, Spearman rho and eta correlations were conducted. Spearman rho correlations were also used to determine associations between occupational performance and perceptions of community integration, role participation, life satisfaction, and productive activity engagement. Eta correlation was used to determine the relationship between occupational performance and productive activity engagement as measured by employment status. Correlation coefficients were interpreted based on criteria established as by Schober, Boer, and Schwarte (2018): negligible (0 to .09), weak (.10 to .39), moderate (.40 to .69), strong (.70 to .89), and very strong (.90 to 1.00). Results Over a five-year period from 2016 to 2021, a total of 21 veterans met the criteria for inclusion in the study. Participants were predominantly male Army veterans who sustained a mild TBI with a mean age of 49.38 years old. Participant demographics and characteristics OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 20 details can be found in Table 1. Due to COVID-19 constraints in cohort residential programming, groups were limited to six individuals per cohort. Hypothesis 1: Participant Characteristics and Occupational Performance Correlations were conducted to explore the relationship between veteran characteristics and occupational performance. Details of all correlation tests are presented in Table 2. Spearman rho correlations were used to determine the relationship between age and MPAI subscales and total score. Positive correlations indicate that as age increases, occupational performance limitations increase. Correlations ranged from negligible (r = .02) to moderate (r = .45), with MPAI-Ability being the highest and MPAI-Participation being the lowest. Age accounted for 20% of the variance in MPAI-Ability. Eta coefficient tests were used to look at the relationship between education, mechanism of injury, service related, and occupational performance. For education, the eta coefficient was highest ( = .44) for MPAI-Adjustment and lowest ( = .04) for MPAI-Ability. Results indicate that as education level increases, MPAI-Adjustment limitations increase. The highest correlation coefficient for mechanism of injury was with MPAI-Adjustment ( = .39). Correlation coefficients for service-related were negligible to weak. Hypothesis 2: Perceptions on Community Integration and Occupational Performance Spearman rho correlations were run to determine the relationship between CIQ scores and MPAI-4 subscale and overall total scores. No statistically significant correlations were found, with correlations ranging from moderate (r = -.49) between CIQ Home and MPAIAdjustment to negligible (-.01 > r < .01) between CIQ Social Integration and MPAI-Overall Score. Better CIQ Home Integration is associated with a decrease in MPAI-Adjustment OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 21 limitations, accounting for 24% of the variance. Correlation coefficients for all relationships are found in Table 3. Hypothesis 3: Perceptions on Role Participation and Occupational Performance Spearman rho correlations were conducted to determine the relationship between veterans number of past, present, and anticipated roles and MPAI-4 scores. As can be seen in Table 4, the results were mixed. All correlation coefficients between anticipated roles and MPAI scores were negative and strong in contrast to positive weak correlations between past roles and MPAI-4 scores. For present roles, with the exception of MPAI-Ability (r = .04), the other three correlations were positive and weak. These results suggest that the number of past roles is weakly associated with greater limitations in occupational performance. The number of anticipated roles are strongly associated with less limitations in occupational performance. Hypothesis 4: Perceptions on Satisfaction with Life and Occupational Performance As determined by Spearman rho correlation tests, there were moderate to strong negative correlations between SWLS scores and MPAI-4 scores, ranging from rs = -.57 to -.79, as shown in Table 5. These results suggest that satisfaction with life is associated with less limitations in occupational performance. Hypothesis 5: Engagement in Productive Activities and Occupational Performance Correlation tests (Spearman rho and eta coefficients) were conducted to determine the strength and direction of the relationship between productive engagement (CIQ Productive Activities score and employment status) and occupational performance. As shown in Table 3, the correlations between CIQ Productive Activities and MPAI-4 scores were weak with all but MPAI-Participation being positive. There was a weak positive correlation between employment OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 22 status and MPAI-Ability ( = .21), MPAI-Adjustment ( = .03), MPAI-Participation ( = .09), and MPAI-Total ( = .17). Discussion and Conclusion Due to enhanced medical care in the austere combat environment and improvements in body and vehicle armor technologies, more service members are surviving injuries sustained on the battlefield. This increased survivability in recent conflicts in Iraq and Afghanistan has resulted in an increased prevalence of TBI in the military population. Following TBI, service members and veterans face challenges to returning to satisfying occupations. This non-experimental retrospective correlational study explored the relationships between veteran characteristics, self-perceived occupational performance, role participation, community integration, and life satisfaction. The constructs of community integration, role participation, and life satisfaction are interwoven yet distinct contributors to occupational performance. In this study, these constructs were evaluated using the CIQ, Role Checklist, and SWLS. The primary aim of this study was to expand the body of knowledge on how these relationships may influence occupational performance among veterans who have sustained a TBI. It was hypothesized that relationships would exist between specific veteran demographic characteristics and self-perceived occupational performance (including role participation, community integration, and life satisfaction). The veteran demographic characteristics examined in this study included: age, gender, employment status, severity of TBI, mechanism of injury, service-connected status (whether or not the TBI occurred in the line of duty), and education level. The sample of veterans was predominantly male (95.2%), with at least a high school diploma (47.62%) and the majority OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 23 served in the U.S. Army, a finding consistent with existing literature involving military service members (Radomski et al., 2009). Predictors of post-TBI functional outcomes have been studied in both veteran and nonmilitary populations, including age, socioeconomic status, pre-injury education level, and cognitive ability (Holland & Schmidt, 2015). In this sample of veterans, participant demographic characteristics (Table 2) were examined compared to subscale and total scores on the MPAI-4. The MPAI-4 was initially developed to increase understanding of rehabilitation outcomes in the acquired brain injury population and consists of three subscales (ability, adjustment, and participation; Malec, 2008). Findings from this study indicated a moderate positive relationships between age and MPAI Ability scores, (rs(21) = .45. Increased age was associated with greater self-perceived impairment in the MPAI-Ability subscale score. This finding suggests that older veterans who have sustained a TBI may perceive themselves to have functional impairment in memory and executive functioning skills, bimanual tasks, mobility, visuospatial, and have subjective feelings of vestibular impairment (e.g., dizziness). Although some of the self-perceived impairment in ability may be attributed to the natural aging process, older age at the time of TBI is associated with poorer functional outcomes (Ponsford et al., 2014). Higher levels of educational attainment at the time of injury were moderately associated with decreased self-perception of adjustment and occupational performance. These findings were unexpected as higher education and cognitive functioning at the time of injury are often considered predictive factors for more favorable rehabilitation outcomes (Holland & Schmidt, 2015). The adjustment subscale contains a gamut of complex interrelationships that may impact occupational performance, and that may also be included within the constellation of PPC OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 24 symptoms. These symptoms include anxiety, depression, and headaches which are especially prevalent in the veteran TBI population (Lippa et al., 2010). The MPAI-Adjustment subscale also contains overlapping components of the MPAI-Participation subscale, such as initiation (difficulty getting started with an activity; Malec, 2008), recreational and leisure interests, and social contact. Both of these domains are established in the literature as being overwhelmingly pervasive in the TBI population. For example, one study reported 84.6% of its participants to have self-perceived deficits in initiation and 76.9% in leisure (Bar-Haim Erez et al., 2009), which implies that regardless of educational attainment, the majority of individuals who have sustained a TBI may have greater perceived impact on the adjustment subscale. It is also important to note that the veteran population generally has a higher level of educational attainment than nonveterans (U.S. Bureau of Labor Statistics, 2017). Consistent with the literature, this studys findings suggested that higher levels of community integration, specifically social integration, are associated with increased occupational performance. There was a moderate inverse relationship between the CIQ Home subscale and overall MPAI total scores, with greater self-perceived performance in home integration associated with improved overall occupational performance. Essential components of the CIQ Home subscale include the ability to engage in crucial tasks such as grocery shopping, meal preparation, housework, care of children, and elements critical to social interaction. These findings support community-based occupational therapy interventions that foster positive social interactions and establish healthy relationships and support within the home and the community. Occupational therapy plays a central role in life skills training interventions to facilitate independence in home management and engagement in productive activities (Wheeler, Lane, & McMahon, 2007). OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 25 The current study found a weak relationship between the number of past roles (as indicated on the Role Checklist) and self-perceived occupational performance. In addition, there was a relationship between the number of anticipated future roles and positive self-perception of overall occupational performance (see Table 4). These findings suggest that the loss of meaningful and valued life roles may contribute to overall feelings of decreased life satisfaction and quality of life which has been supported extensively in the literature (Dainter, McKinlay, & Grace, 2019; Juengst et al., 2015); while forward, goal-directed thinking may have a positive impact on perception of occupational performance. Collaborative goal setting, self-efficacy, and expectations for future role acquisition, may positively impact perceptions of occupational performance. The study findings were consistent with the literature in that self-perceived life satisfaction was associated with increased community participation (Wheeler et al., 2017). Better occupational performance was associated with increased perceived life satisfaction in this sample of veterans. The MPAI-4 Participation Index includes perceived ability to initiate (start activities without prompting), engage in social contact, participation in age normal leisure and recreational pursuits, independence with self-care, responsibilities of independent living (including meal preparation, homemaking, home repairs and maintenance, and personal health maintenance), transportation, work and school participation, and managing money and finances. In addition, this study found that greater perceived levels of home integration were moderately associated with greater perceived levels of successful occupational performance. Study Limitations The sample size in the study was markedly limited due to COVID-19 restrictions that temporarily halted residential treatment programming. Upon re-opening, cohort capacity was OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 26 decreased to six veterans, not all of which have a past medical history of TBI. Power analysis indicated a minimum sample size of 35 veterans, who completed all four standard of care instruments, for optimal statistically significant analysis and generalizability of the study findings. Only six veterans in the study completed all four instruments while the remaining 15 participants completed a combination of one to three instruments. Due to homogeneity in participant characteristics, analysis of gender, TBI severity, and branch of service, and their impact on occupational performance was unable to be conducted. It is also important to consider that CIQ scores can be influenced by age and level of education; older individuals generally have lower CIQ scores and those with higher educational attainment tend to score higher on the CIQ (Kaplan, 2001). The perceived stress of quarantine and subsequent social isolation surrounding the COVID-19 global pandemic may have influenced life satisfaction, community and role participation, and ability to engage fully in daily occupations. Lastly, the study relied on self-reported instruments versus clinically observed measures, that may be subjectively or situationally biased due to their administration at a single point in time and based on self-perception versus actual performance. Future Research The results of this study have broad implications to serve as the foundation for future research endeavors related to occupational therapy. Further research aimed at understanding the OT intervention and efficacy as it relates to role acquisition, role loss, and collaborative goal setting in the veteran population is indicated. Research directed toward increasing understanding of OTs role in social and home integration may have the potential to increase overall veteran life satisfaction and perceived successful occupational performance. Conclusion OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 27 Understanding recovery rehabilitation needs for the veteran population who has sustained a TBI is critical to overcoming the potential barriers to occupational performance. Contributors to occupational performance in this study were found to be increased perceived life satisfaction, anticipated role participation, and higher levels of perceived social and home integration. Occupational therapy practitioners are positioned to foster therapeutic relationships that maximize engagement and participation in meaningful and satisfying daily occupations. The involvement of veterans in collaborative goal-setting and interventions to establish meaningful life roles can increase perceived life satisfaction. Occupational therapists are rehabilitation professionals that play a central role in assisting veterans into the community and facilitate participation in everyday life following TBI. Through a combination of client-centered and directed intervention, OTs are positioned to create targeted and contextualized interventions to maximize independence in everyday activity (AOTA, 2016). Group and individualized opportunities should be provided to ensure veterans have the ability to engage in daily activities within a safe environment during rehabilitation. 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Headache: The Journal of Head and Face Pain, 50(8), 1262-1272. https://doi.org/10.1111/j.1526-4610.2010.01700.x van Baalen, B., Odding, E., van Woensel, M. P., van Kessel, M. A., Roebroeck, M. E., & Stam, H. J. (2006). Reliability and sensitivity to change of measurement instruments used in a traumatic brain injury population. Clinical Rehabilitation, 20(8), 686-700. https://doi.org/10.1191/0269215506cre982oa Wheeler, S., Acord-Vira, A., Arbesman, M., & Lieberman, D. (2017). Occupational therapy interventions for adults with traumatic brain injury. American Journal of Occupational Therapy, 71(3), 7103395010p1-7103395010p3. doi:10.5014/ajot.2017.713005 Wheeler, S., Acord-Vira, A., & Davis, D. (2016). Effectiveness of interventions to improve occupational performance for people with psychosocial, behavioral, and emotional impairments after brain injury: A systematic review. American Journal of Occupational Therapy, 70(3), 1-9. https:// doi.org/10.5014/ajot.2017.713005 Wheeler, S. D., Lane, S. J., & McMahon, B. T. (2007). Community participation and life satisfaction following intensive, community-based rehabilitation using a life skills training approach. OTJR: Occupation, Participation and Health, 27(1), 13-22. https://doi.org/10.1177/153944920702700103 Willer, B., Ottenbacher, K., & Coad, M. (1994). The community integration questionnaire: A comparative examination. American Journal of Physical Medicine and OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 39 Rehabilitation, 73(2), 103-103. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/8148099 Zhang, L., Abreu, B. C., Gonzales, V., Seale, G., Masel, B., & Ottenbacher, K. J. (2002). Comparison of the Community Integration Questionnaire, the Craig Handicap Assessment and Reporting Technique, and the Disability Rating Scale in traumatic brain injury. The Journal of Head Trauma Rehabilitation, 17(6), 497-509. OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 40 Table 1 Descriptive Statistics for Demographics and Participant Characteristics (N = 21) M SD Min Max 49.38 10.93 33 70 N % Female 1 4.8 Male 20 95.2 Employed 10 47.62 Unemployed 11 52.38 Mild 19 90.48 Moderate 1 4.76 Severe 1 4.76 Fall 3 14.29 Blast 6 28.57 Other 12 57.14 Yes 14 66.67% No 7 33.33% Age Gender Employment Status TBI Severity Mechanism of Injury Service-Connected OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI Education Level High School/GED 10 47.62 Some College or Greater 11 52.38 Notes. TBI = Traumatic brain injury; Min = Minimum; Max = Maximum 41 OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 42 Table 2 Correlations Between Participant Characteristics and Occupational Performance MPAI MPAI MPAI MPAI Ability Adjustment Participation Total r r r r .45 .02 -.02 .33 Education Level (n = 16) .04 .44 .08 .44 Mechanism of Injury (n = 16) .14 .39 .15 .19 Service-Related (N = 16) .05 .03 .10 .22 Age (n = 21) Note. MPAI = Mayo Portland Adaptability Inventory OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 43 Table 3 Correlations Between Community Integration and Occupational Performance MPAI MPAI MPAI MPAI Ability Adjustment Participation Total rs rs rs rs CIQ Home Integration (n = 12) -.18 -.49 -.38 -.43 CIQ Social Integration (n = 12) .04 .03 -.51 0a CIQ Productive Activities (n = 12) .22 .18 -.26 .11 CIQ Total (n = 12) -.05 -.25 -.38 -.24 Note. MPAI = Mayo Portland Adaptability Inventory; CIQ = Community Integration Questionnaire a rs = .004 OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 44 Table 4 Correlations Between Role Participation and Occupational Performance MPAI MPAI MPAI MPAI Ability Adjustment Participation Total rs rs rs rs Past Roles (n = 12) .25 .13 .23 .13 Present Roles (n = 11) .08 -.30 -.13 -.26 Anticipated Roles (n = 12) -.59 -.72 -.56 -.76 Note. MPAI = Mayo Portland Adaptability Inventory OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 45 Table 5 Correlations Between Satisfaction with Life and Occupational Performance SWLS (n = 7) MPAI MPAI MPAI MPAI Ability Adjustment Participation Total rs rs rs rs -.57 -.60 -.79 -.61 Note. MPAI = Mayo Portland Adaptability Inventory; SWLS = Satisfaction with Life Scale OCCUPATIONAL PERFORMANCE IN VETERANS WITH TBI 46 Appendix Criteria for Traumatic Brain Injury Severity Criteria Mild Moderate Severe Structural Imaging Normal Normal or abnormal Normal or abnormal Loss of Consciousness Alteration of Consciousness or Mental State Post-traumatic amnesia (PTA) Glasgow Coma Scale (best available score in first 24 hours) 0 30 minutes > 30 minutes and < 24 hours > 24 hours A moment up to 24 hours > 24 hours 0 1 day > 1 and < 7 days > 7 days 13 15 9 12 <9 ONeil et al. (2013)  ...

... MEETING HEALTH CARE NEEDS: THE PERSPECTIVE OF RURAL COMMUNITYDWELLING OLDER ADULTS WITH MULTIPLE CHRONIC DISEASES DURING THE COVID-19 PANDEMIC Submitted to the Faculty of the College of Health and Sciences University of Indianapolis In partial fulfilment of the requirements for the degree Doctor of Health Science By: Romeo Acosta, PT, MHS Copyright December 9, 2021 By: Romeo Acosta, PT, MHS All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ___________________________________________ Sharon Baggett, PhD Committee Member ___________________________________________ Lisa Borrero, PhD Committee Member ___________________________________________ Accepted by: Laura Santurri, PhD, MPH, CPH ___________________________________________ Director of DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ___________________________________________ RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Meeting Health Needs: The perspective of Rural Community-Dwelling Older Adults with Multiple Chronic Diseases During the COVID-19 Pandemic Romeo Acosta, PT, MHS Department of Interprofessional Health and Aging Studies, University of Indianapolis 1 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 2 Abstract Background: The majority of older adults, due to aging processes, suffer from two or more medical problems. Therefore, it was anticipated that their lived experiences would include unique challenges during the COVID-19 pandemic. Also, community-dwelling older adults in rural areas experience more significant healthcare disparities than their urban counterparts due to low socioeconomic status, insufficient healthcare workers, and lack of infrastructure. Purpose: This qualitative phenomenological study aimed to understand the lived experiences of rural community-dwelling older adults with multiple chronic diseases during the COVID-19 pandemic. Its primary focus was to determine how this population experienced health care during this time. Method: The transcribed data from semi-structured interviews were analyzed using Colaizzi's descriptive phenomenological method to extract more profound meaning, and interpretations of the participants' lived experiences. The results of this study were anticipated to inform healthcare providers, educators, and policymakers of the necessary changes in policies and planning to ensure that the healthcare needs of rural community-dwelling adults will be met in the next healthcare crisis. Results: Access to health services, lifestyle changes, the influence of technology, the impact of mitigation protocol, and health and wellbeing are the main themes that provided a better understanding of the health care experiences of rural community-dwelling older adults during the COVID-19 pandemic. Conclusions: Despite the challenges, the rural community-dwelling older adults showed resiliency, resourcefulness, perseverance, adaptation, and reliance on religious faith to overcome the barriers imposed by the COVID-19 pandemic in meeting their health care needs. Keywords: rural community-dwelling older adults, COVID-19, age-related chronic comorbidities, public health, social distancing RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 3 Acknowledgments It would not have been possible to complete this research project without several individuals and my work organization's support, cooperation, and participation. These sources of help are family members, project committee members, participants, coworkers, and a volunteer experienced in qualitative research data coding. Their contributions inspired, motivated, and sustained me to keep moving forward. I am forever indebted and grateful for their precious time and efforts. I would like to recognize my mother, who instilled a self-reliant can-do attitude, which helps me believe that anything is achievable with hard work, diligence, and perseverance. My wife, Michele, provided invaluable counsel and encouraged me to have confidence when I had self-doubt, and I greatly appreciate her patience. I strive for professional growth to be an excellent example for my daughters (Deniece Nicole and Alejandra Isabel Acosta). They are my inspirations to be a good person, keep moving forward and make a positive impact in life. This project would not have taken shape as it should without the invaluable expert and highly knowledgeable guidance from my committee chair, Dr. Laura Santurri. Her skills and experience in qualitative research helped me navigate every challenging turn along the process leading me to the right destination. Another professor who stoked my interest in qualitative studies was Dr. Lisa Borrero. As the project analysis expert of the committee, Dr. Borrero's proficiency was instrumental in helping me make sense of the copious data collected. Dr. Sharon Baggett's expertise with the participants' demographic in this study was instrumental in customizing communication most effectively. I learned essential nuances of communication through written and spoken means from Dr. Baggett that made participants comfortable and willing to share their lived experiences without hesitation. My project committee's patience in RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 4 their responses to my questions and work drafts motivated me to push forward, especially when I felt diminished and incapable. I want to give a special mention and thanks to Dr. Elizabeth Horrall Stith. I am enormously grateful for her contribution to this endeavor. Dr. Stith's input was crucial in deciphering and interpreting the meaning of the shared lived experiences of the participants of this research project, which is the goal of this project. I could not thank her enough for taking some precious time away from her family to help me. The cooperation and support of my work organization, American Nursing Care, has been crucial in choosing and recruiting participants. Thomas Drook, our branch's director of operations, welcomed my project and assisted me in reaching out to appropriate authorities for permission to conduct the research project. Mr. Drook also communicated to my coworkers the corporate approval of the project and allowed me to implore their assistance in disseminating recruitment flyers. I want to give special mention to four of my colleagues, Linda White-Lewis RN, Steve Eilerman, PT, Oliver Cordova, PT, and Karen Turner, PTA. They all put in extra effort to help me with recruiting participants. I want to acknowledge Gina Lucas, our Associate Corporate Responsibility Officer, who efficiently facilitated the research project's corporate approval. Finally, I want to extend my deep gratitude to all of the participants of this research project. All participants welcomed the intrusion of the project into their lives, even amid the COVID-19 pandemic uncertainties. The primary reason for volunteering to participate in this research project is to help others in similar healthcare situations during this pandemic. Their resiliency, resourcefulness, perseverance, adaptation, and positive outlook during this pandemic are character models for all of us to follow. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 5 Table of Contents Abstract ........................................................................................................................................... 2 Acknowledgement ...........................................................................................................................3 Chapter 1: Introduction....9 Background .9 Problem Statement 10 Purpose Statement .10 Research Question 10 Significance of Study 11 Definition of Terms ...11 Chapter 2: Literature Review ....11 The Coronavirus Disease 2019 (COVID-19) Outbreak 12 COVID-19 in the U.S. ..13 Vulnerable Populations During COVID-19 .14 Racial/Ethnic Minorities and Immigrants ....14 Individuals Experiencing Homelessness, Substance Abuse Problems, and Physical Impairments ..15 Older Adults ..16 Rural Community-Dwelling Older Adults 17 Challenges for Rural CDOA During COVID-19 Pandemic .17 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 6 Positive Role of Technology for Rural CDOA .19 Gap in the Literature .20 Chapter 3: Method ....21 Study Design .21 Participants 22 Setting ....................................................................................................................................... 23 Procedures .23 Recruitment ...23 Informed Consent.................................................................................................................. 27 Data Collection Process ........................................................................................................ 28 Data Management and Analysis ..............................................................................................................31 Rigor and Trustworthiness 33 Results ........................................................................................................................................... 36 Theme 1: Lifestyle Changes .....37 Physical Activity ............................................................37 Socialization.......................................................................................................................... 38 Shopping Habits .................................................................................................................... 41 Entertainment/Recreation ..................................................................................................... 43 Theme 2: Impact on Health and Wellbeing .............................................................................. 44 Mental/Spiritual .................................................................................................................... 44 Medical Conditions Impacted the Most ................................................................................................ 46 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 7 Outlook on Life ..................................................................................................................... 47 Coping Mechanism ............................................................................................................... 48 Theme 3: Access to Health Care Services ................................................................................ 50 Appointments ........................................................................................................................ 50 Health Care Needs, Interventions, and Treatment ............................................................................. 52 Pharmacology ....................................................................................................................... 54 Support System ..................................................................................................................... 55 Theme 4: Use of Technology.................................................................................................... 56 Health Care Purposes ............................................................................................................ 56 Personal Use.......................................................................................................................... 57 Financial Limitations ............................................................................................................ 58 Participants' Recommendations to Help Improve Access and Delivery of Health Care Services for CDOA in the Next Pandemic .............................................................................................. 59 Chapter 4: Discussion ...62 Support Systems........................................................................................................................ 65 Social Connections................................................................................................................ 65 Local Community Programs ................................................................................................. 66 Health Care System............................................................................................................... 69 Study Limitations ...................................................................................................................... 71 Implications for Future Research .............................................................................................. 72 Conclusion .................................................................................................................................... 73 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 8 References .744 Table 1 Participant Characteristics ..91 Table 2 Codebook Example ..92 Table 3 Codebook Example: Final Theme ...93 Figure 1 Colaizzis Seven Steps Coding Process......94 Figure 2 Colaizzis Desscriptive Phenomenological Analysis Methodology ...........95 Figure 3 Example of Perceived Theme Relationships ......96 Appendices 97 Appendix A IRB Approval ...97 Appendix B Letter of Cooperation .......98 Appendix C Approval of Letter of Cooperation 100 Appendix D Recruitment Flyer ...102 Appendix E Information Sheet ...103 Appendix F Interview Guide ..106 Appendix G First Member-Checking Letter of Instructions ..111 Appendix H Narrative Description of Final Themes ..112 Appendix I Second Member-Checking Instructions .......120 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 9 Meeting Health Care Needs: The Perspective of Rural Community-Dwelling Older Adults with Multiple Chronic Diseases During the COVID-19 Pandemic Before the COVID-19 pandemic, there were already existing inequities in health care access that were worsening for many groups in the United States [U.S.] (Yamada et al., 2015). The federal and state public health agencies' ineffective response to the COVID-19 pandemic brought the U.S. health care disparities to the fore of general discussions (Weible et al., 2020). The social distancing aspect of the community mitigation protocol that the Centers for Disease Control and Prevention agency implemented has negatively impacted individuals' health, financial, social, and psychological status (Douglas et al., 2020). Older adults are one of the vulnerable groups significantly impacted by the COVID-19 pandemic as most have more than one chronic disease, which increases their risk of acquiring the virus and experiencing poor outcomes (Turk & McDermott, 2020). The stay-at-home mandate has prevented community-dwelling older adults (CDOA) from getting to fitness centers, parks, community centers, churches, and family members and friends' houses, which dramatically reduced their physical activities, social interactions, and participation in health care management (Weible et al., 2020). For many CDOA, the COVID-19 social distancing protocol has exacerbated loneliness and depression and increased difficulty accessing health care services and delivery (Douglas et al., 2020; Wand et al., 2020). In rural communities, the effective management of the CDOAs health and well-being is influenced by lower socioeconomic status, insufficient health care workers, and the lack of public and private infrastructure (Bolin et al., 2015). Therefore, having fewer resources and services than the rest of the population makes meeting the health care needs of rural CDOA more challenging when access is disrupted. Accordingly, social distancing during the COVID-19 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 10 pandemic has made the lives of CDOA in rural communities even more isolated and access to food sources, community support centers, health and fitness facilities, and healthcare delivery and services more difficult (Morrow-Howell et al., 2020; Naja & Hamadeh, 2020) Problem Statement The effective management and maintenance of health and well-being in older adults depends on access to quality healthcare, including the availability of healthcare providers, communication infrastructure (internet connectivity), transportation, community services, and affordability of services (Bolin et al., 2015; Skoufalos et al., 2017). The recent global pandemic has exacerbated disparities and disrupted essential services and resources in health care for rural CDOA (Morrow-Howell et al., 2020). Studies that aim to understand the impact of these disruptions through the lived experiences of rural CDOA during the COVID-19 health crisis are currently lacking. Purpose Statement This qualitative phenomenological study aimed to understand the lived experiences of rural CDOA with multiple chronic diseases during the COVID-19 pandemic. Of specific focus was how this population experienced health care during this time. Research Questions This study attempted to address the following primary research question and associated sub-questions: How do community-dwelling older adults with multiple chronic diseases in rural midwestern town describe their health care experience during the COVID-19 pandemic? o How do rural community-dwelling older adults meet their health care needs? RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 11 o How does the social distancing aspect of the public health agencys mitigation guidelines affect the rural community-dwelling older adults access to health care services and delivery? o How do the COVID-19 pandemic influenced and affected the rural communitydwelling older adults' experiences and attitudes about using digital technologies related to health care? Significance of the Study The results of this study may help inform the development of a practical, equitable, and just public health preparedness protocol for the next global pandemic that explicitly addresses the health care needs of rural CDOA. Definition of Terms Chronic diseases: Medical conditions that are persistent and limit daily living activities requiring ongoing monitoring and treatment (Raghupathi & Raghupathi, 2018). Community-dwelling older adults: Adults 65 years and older who live independently in non-institutionalized residences. Rural community: Inhabitants, dwellings, and geographic areas outside the definition or boundaries of urban areas (50,000 individuals) and urban clusters (at least 2,500 but less than 50,000 individuals) in the U.S. (United States Census Bureau, 2010). Literature Review The world has been plagued with pandemics throughout history. In addition to the severe illness, permanent debility, and death that pandemics can cause, they can also ruin economies, disrupts social connections, and exacerbate political tensions (Jamison et al., 2017). Huremovi RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 12 (2019) cited that several global severe health disease outbreaks have threatened humankind in the twentieth century to the current era, such as the "Spanish Flu," Yugoslavia's Smallpox, HIV, severe acute respiratory syndrome (SARS), swine flu, Ebola, and Zika. Nevertheless, given that humanity has suffered and endured multiple outbreaks of infectious illnesses in its existence, the most recent global pandemic proved that human civilization continues to be ill-prepared and vulnerable to destruction from its indiscriminate onslaught. The Coronavirus Disease 2019 (COVID-19) Outbreak On December 1, 2019, experts reported the first symptoms of a disease that would impact the lives of all human beings in the world for months and eventually be known as the COVID-19 pandemic (Liu et al., 2020). Cases of illness characterized by pneumonia symptomatology with or without accompanying gastrointestinal disorder started to show up in almost 2/3 of the employees in a seafood market in Wuhan, one of the Hunan province cities in China (Shereen et al., 2020). Wu et al. (2020) reported that Wuhan's local health officials eventually gave the epidemiological warning on December 31, 2019, which prompted the seafood market's closing the following day. However, the ensuing months gave testament to the high rate of human-tohuman transmissibility and fatality of COVID-19 as it quickly spread in China, and in only fiftyfive days, it infected greater than 70,000 people with a reported mortality rate of more than 1,800 (Shereen et al., 2020). COVID-19 eventually spread rapidly worldwide and became a global pandemic in approximately two months (Wu et al., 2020). The World Health Organization (WHO) reported on October 11, 2020, that there were 36,754,395 infections and 1,064,838 mortalities confirmed in 235 countries, regions, and territories globally (WHO, 2020). RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 13 COVID-19 in the U.S. In the U.S., the nations public health agency reported the first COVID-19 infection on January 21, 2020 (Centers for Disease Control and Prevention [CDC], 2020). However, the government's initial reaction during the early part of the pandemic was to diminish the threat of COVID-19 (Weible et al., 2020). During the proceeding months, it became apparent that there was disorganization, poor strategic planning, and lack of political will among the federal, state, and local government officials and within public health agencies as the rate of infections and mortalities continued to rise (Haffajee & Mello, 2020). In just two months from the first reported case, the number of infections grew to 235,000 all over the U.S. (Omer et al., 2020). Ten months later, on October 12, 2020, the CDC confirmed 7,740,934 COVID-19 infections and 214,108 deaths in the U.S. (CDC, 2020). Parodi and Liu (2020) reported that the U.S. government and public health agency's initial strategic plan to combat the spread of COVID-19 was containment or quarantine. However, the containment strategy failed as infection rates increased in California and New York City due to lack of facilities (isolation rooms), medical personnel, personal protective equipment, and other disposable medical equipment such as surgical masks (Parodi & Liu, 2020). To augment the effect of containment, the CDC recommended implementing a community mitigation protocol, which all state governments enforced (Lasry et al., 2020). The proposed strategies included universal personal protective measures such as frequent handwashing and covering of mouth and nose (mask), social distancing, and disinfecting surfaces (Lasry et al., 2020). However, because of competing policies between the CDC and the White House, compliance with community mitigation guidelines in the U.S. has been highly politicized and RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 14 contentious (Wiley, 2020). Arguably, the absence of transparency and lack of accountability in government leadership contributed to the U.S. struggle to control the spread of COVID19. Quinn and Kumar (2014) suggested that groups of the population are more at risk of struggling to cope during pandemics in U.S. society. Specifically, these vulnerable people during COVID-19 in the U.S. include the homeless, Native American, African American, Hispanic/Latinos, immigrants, non-citizen, older adults, as well as individuals with financial difficulties, mental health conditions, substance abuse problems, physical impairments, and medical issues (Douglas et al., 2020; Mesa Vieira et al., 2020). Vulnerable Populations During COVID-19 Racial/Ethnic Minorities and Immigrants Due to long-standing systemic inequities and inequality, many racial and ethnic minorities and immigrants have low socioeconomic status, have inadequate healthcare insurance coverage, and hold jobs in retail, food service, custodial, transportation, and healthcare industries (Laurencin & McClinton, 2020). During the COVID-19 pandemic, the Cybersecurity and Infrastructure Security Agency (CISA) of the U.S. Department of Homeland Security issued a public directive which designated specific infrastructure workforces' operation and services in public and private sectors nationally, statewide, and locally to be critically essential to meet the needs of the citizens (CISA, 2020). The list of crucial workforce establishments provided by CISA (2020) included healthcare, food, agriculture, police force, first responders, energy, water, wastewater, public works, transportation, communication, information technology, critical manufacturing, hazardous materials, financial services, chemical, defense industrial base, residential/shelter facilities and services, and hygiene products and services. Dorn et al. (2020) posited that many workers in a number of these essential business establishments such as grocery RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 15 stores, factories, public transits, nursing homes, hospitals, first responders, agriculture, and government offices are immigrants and racial and ethnic minorities. Therefore, the racial and ethnic minorities (African Americans, Hispanics/Latinos, and Asians) and immigrants who were already suffering from economic and health inequities and inequalities were disproportionately affected compared to other population groups during the COVID-19 pandemic (Bambra, 2020). Specifically, being an essential worker during the COVID-19 pandemic means continuing to work, which increases the risk of exposure to the disease and spreading it to family members. McCormack et al. (2020) estimated that 40% of adults in the U.S. were essential workers, based on the updated 2018 American Community Survey (ACS). Out of these essential workers, 14% were African American, and 17% were Latin Americans. Using classifications that attempt to define households' economic susceptibility, McCormack et al. (2020) approximated 13% comprised of homes with low income (<$40,000), were uninsured, and had at least one resident at 65 years old or older. The results of another study that accounted for socioeconomic determinants of participants from seven densely populated states (New York, Michigan, Massachusetts, Pennsylvania, New Jersey, California, and Louisiana) suggested that African Americans are almost three times more likely to die from COVID-19 infection than nonHispanic whites (Abedi et al., 2020). Individuals Experiencing Homelessness, Substance Abuse Problems, and Physical Impairments Individuals who suffer from substance abuse and mental health disorders worsen of their symptoms because of loneliness, depression, and anxiety brought on by the shelter in place mandate (Galea et al., 2020). Homeless people with health problems and do not have access to cleaning facilities and hygienic paraphernalia and are forced to stay in crowded living RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 16 arrangements increase their chance of acquiring COVID-19 (Tsai & Wilson, 2020). In the case of individuals with physical difficulties, many are financially challenged, have chronic health problems, and live in group homes, which increases their susceptibility to contracting COVID-19 (Turk & McDermott, 2020). Older Adults According to the CDC, as of September 2020, individuals sixty-five years and older comprise eight out of ten deaths related to COVID-19 in the U.S. (CDC, 2020). A case series study of 5700 COVID-19 patients with the median age of 63 years old in New York City during the pandemic's height listed comorbidities of cancer, cardiovascular disease (hypertension, coronary artery disease, and congestive heart failure), chronic respiratory disease (asthma, chronic obstructive pulmonary disease, and obstructive sleep apnea), HIV, organ transplant, liver diseases, obesity, and diabetes (Richardson et al., 2020). The social distancing part of the U.S. mitigation guidelines the CDC recommended, adopted by all the state governments, disparately impacted the lives, well-being, and health of vulnerable populations, especially older adults (Lasry et al., 2020; Mesa Vieira et al., 2020; Morrow-Howell et al., 2020). Consequently, for many CDOA, the COVID-19 social distancing protocol resulted in social isolation that exacerbated loneliness and depression and increased difficulty accessing healthcare services and delivery (Douglas et al., 2020; Wand et al., 2020). The protocol prevented community-dwelling older adults (CDOA) from getting to fitness centers, parks, community centers, churches, family members, and friends' houses, which dramatically reduced their physical activities, social interactions, and participation in their health care needs (Weible et al., 2020). Van Orden et al. (2020) posited that the lack of social connections in later years of people's lives could adversely impact older adults' health and well-being. The authors suggested RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 17 social isolation could promote and exacerbate medical and mental conditions such as cardiovascular disease (atherosclerosis, arteriosclerosis), type 2 diabetes, high blood pressure, perception of pain, suicidal tendency, cognitive deficits (dementia), sleep disorder, and physical exhaustion. Rural Community-Dwelling Older Adults Older adults are predicted to account for 20% of the U.S. population by 2030 (Chesser et al., 2016). Skoufalos et al. (2017) reported that 25% of older adults in the U.S. live in rural communities. In general, older adults' health care needs can be complicated and may require access to a wide range of successful management (Thorpe et al., 2011). In addition to having multiple health issues, most older adults exhibit age-related physical, mental, and cognitive changes that lead to functional difficulties (Chang et al., 2019; Tkatch et al., 2017; Yamada et al., 2015). Skoufalos et al. (2017) intimated that in rural communities, the lives of CDOA are negatively impacted by social and environmental determinants such as the exodus of the younger citizens, difficulty developing community partnerships, waning businesses, poorly funded local government, insufficient health care workers, and limited public and private infrastructure. Due to these challenges, rural CDOA generally presents with more ongoing multiple health problems, infirmity and are less likely to engage in a healthy lifestyle (Skoufalos et al., 2017). Therefore, rural CDOAs are more vulnerable to the adverse effects of COVID-19 and have more difficulty meeting their health care needs during the pandemic than their urban counterparts. Challenges for Rural CDOA During COVID-19 Pandemic Many older adults in North America live alone, and those with declining health face many challenges in meeting life's necessities and healthcare needs (Morrow-Howell et al., 2020; Naja & Hamadeh, 2020; Reher & Requena, 2018)). Due to age-related physical deficits and medical RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 18 issues, some rural CDOA already have difficulty leaving their home and are dependent on transportation or visitations from friends and family members for appointments (including medical), shopping, and socialization. The "shelter in place" mandate during the COVID-19 pandemic disrupted the already inadequate healthcare system, public and private social support system and exacerbated the disparities in health care delivery and services for the CDOA in rural communities (Henning-Smith, 2020; Morrow-Howell et al., 2020; Naja & Hamadeh, 2020). Social distancing made the lives of CDOA in rural communities even more isolated by limiting attendance and group activities that provide psychosocial support (Morrow-Howell et al., 2020). Rural CDOA who have multiple chronic medical conditions are highly sensitive to sudden interruptions of public and private functional support caused by the stay-at-home ordinance (Steinman et al., 2020). Social disconnectedness can promote anxiety and depression, resulting in reduced motivation for physical activity, which is more debilitating for CDOA (Morrow-Howell et al., 2020; Santini et al., 2020). The inability to get to grocery stores or fresh food markets forced some CDOA to rely on food laden with preservatives that exacerbate chronic illnesses such as hypertension, congestive heart failure, and diabetes (Steinman et al., 2020). One of the consequences that stemmed from the CDC mitigation protocol is the healthcare providers' advocacy to use digital technologies to conduct remote meetings (Wosik et al., 2020). However, for some older adults, the use of technology can be very intimidating and thus becomes a barrier in health management (Fischer et al., 2014; Vaportzis et al., 2017). This suggestion is supported by Tsai et al.s (2017) study, which reported that older adults have the lowest adjustment rate and are slow to adapt to the required skills and efficacy needed with digital technologies. Age-related physical, mental, and cognitive changes, low socioeconomic RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 19 status, and reluctant stance against technology are additional factors associated with low utilization of digital technologies in health care management among older adults (Y.-H. Wu et al., 2015). Positive Role of Technology for Rural CDOA The digital age yields advancements in medical technologies that promise to improve health care delivery and the quality of life for patients with chronic illnesses (Mesk et al., 2017). Gordon and Hornbrook (2018) suggested that older adults are the most affected demographic by the steady transition from analog to digital health care access and delivery. Modern technological innovations have encouraged older adults to control their health and wellbeing (Manafo & Wong, 2012), and they have shown increased interest in the use of digital devices such as smartphones and tablets (Morrow-Howell et al., 2020; Vaportzis et al., 2017). The three main uses of digital technology that can have a positive impact on the lives of rural CDOA are socialization, increased access to health care through telemedicine, and providing therapeutic interventions via digital therapeutics (Chopik, 2016; Kaufman & Khurana, 20161/27/2022 1:58:00 PM; van Houwelingen et al., 2018). Social interactions through the use of the internet among older adults have reduced loneliness and depression, promoting a more positive outlook and life satisfaction (Chopik, 2016). Among older rural veterans, the use of telemedicine through synchronous (real-time virtual meetings), recorded (registering then forwarding data), and remote monitoring (health care providers watching health information) not only increased access to health care delivery and services but also improved quality of life for both the veterans and caregivers (Lum et al., 2020). A randomized control trial study of homebound CDOA with chronic pulmonary obstructive disease and heart failure receiving home RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 20 health care services supplemented by telehealth showed decreased emergency department visits and depression feelings among the treatment group (Gellis et al., 2012). Digital therapeutics (DT) is a treatment procedure wherein an intervention is delivered automatically through wearable digital devices (Berman et al., 2018). An example is the use of digital therapeutics as an aid in glucose monitoring, which has been shown to improve compliance and promote self-efficacy in managing type 2 diabetes (T2DM) in older adults (Kaufman & Khurana, 2016). Cafazzo (2019), however, intimated that since DT is in a relative infancy stage, the adoption of its use has not quite reached a critical point of mainstream application. Also, there are no evidence-based studies that support the validity and reliability of the use of DT (Cafazzo, 2019). However, based on currently available research, DT can play a positive role in the health care management of rural CDOA with T2DM during pandemics. Gap in the Literature There has not been a global health crisis comparable to the magnitude of COVID-19 since the 1968 H3N2 influenza pandemic (Jackson et al., 2010). The COVID-19 and H2N2 pathogens threatened older adults' health directly and indirectly (Douglas et al., 2020; Jackson et al., 2010; Mesa Vieira et al., 2020). CDOA, in general, has been one of the vulnerable populations suffering the most during the recent global pandemic (Douglas et al., 2020; Mesa Vieira et al., 2020). As cited earlier, studies have investigated the indirect adverse effects of COVID-19 mitigation protocol related to how the health care needs of the general CDOA are met (Emanuel et al., 2020; Morrow-Howell et al., 2020; Steinman et al., 2020). However, to date, no studies attempt to understand the experiences of rural CDOA in meeting their healthcare needs during the COVID-19 pandemic. Results from this study that seeks to understand the healthcare and social isolation experience of CDOA with multiple chronic diseases during the RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 21 COVID-19 pandemic will be useful for public health experts and government officials in developing effective response plans to mitigate the effects of the next global health crisis. Method Study Design The researcher utilized a qualitative, phenomenological approach in understanding the meaning of the lived experiences of CDOA with multiple chronic conditions during the COVID19 pandemic. Davidsen (2013) advanced that, as used in qualitative research, phenomenology is based on a philosophical concept that attempts to understand human experiences as a unique phenomenon for each individual. Accordingly, phenomenological qualitative research is concerned with unraveling the complexities of human lived experiences (phenomenon) into relatable descriptions that approximate the phenomenon's essence (Davidsen, 2013). An interpretive rather than a descriptive type of phenomenological methodology for analyzing the target phenomenon was employed in this study. Specifically, the hermeneutic phenomenological approach used is a systematic collaborative process between the investigators and participants, in which meaningful interpretations are created through repeated readings, introspections, and explications (Laverty, 2003). The articulated personal lived experiences of the rural CDOA were transcribed into texts, then explored and repeatedly analyzed for meaningful themes that best describe the essence of the participants' lived experiences related to health care during the COVID-19 pandemic (Sloan & Bowe, 2014). The researcher solicited participants' thoughts, opinions, clarifications, concerns, and approval of the transcripts and final interpretation of their lived experiences. Before conducting any research activities, the primary investigator obtained approval for the study from the University of Indianapolis (UIndy) Institutional Review Board ([Appendix A] IRB). RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 22 Participants A purposeful sampling of individuals was used for this study. Creswell and Poth (2018) suggested that purposeful sampling ensures the chosen participants are the best representatives since they have first-hand knowledge of their individual and shared lived experiences of the problem, issue, event, experience, or phenomenon observed in a study. In selecting participants, this study utilized the criterion sampling strategy. Patton (2002, as cited in Palinkas et al., 2015) described purposeful sampling strategies based on specific objectives of selecting a group or population representative of the phenomena studied. Criterion sampling is one strategy in which the method of selecting participants depends on specified characteristics or criteria. Individuals selected from criterion sampling strategies are presumed to be well-informed, have experienced the studied phenomenon, clearly articulate their encounter, and are willing participants (Palinkas et al., 2015). For these reasons, criterion sampling was used in this phenomenological study. Individuals invited to this study met five inclusion criteria: geographic location (rural community as defined on page four) age (65 years old and older) medical conditions (two or more chronic diseases) English language proficiency cognitive and psychological competency (no diagnosis of Alzheimer's disease, any types of dementia, dissociative, schizophrenia, personality disorder; successfully demonstrate teach-back method for comprehension) The sample for this study included ten participants. Moser and Korstjens (2018) intimated that the power of small sample sizes is amplified by the profusion of information from the participants' interviews. Since this was a phenomenological research study that used semi- RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 23 structured interviews, it was expected to produce robust data from each participant (Creswell & Poth, 2018). Morse (2015) suggested that the directness and familiarity of the phenomenon to the participants offers a casual and relaxed atmosphere fostering an open interaction. Therefore, the combination of purposeful sampling and the use of well-planned semi-structured interviews should produce a meaningful interpretation of the lived experiences of rural CDOA meeting their health care needs during the COVID-19 pandemic. Setting The setting for this research study was the rural communities of the states of Indiana and Ohio. These are areas served by Reid Home Health Care (RHHC), a home health agency located in Richmond, Indiana, where the primary investigator (PI) is employed as a full-time physical therapist. It provides skilled professional healthcare services to community-dwelling older adults for seven counties in Indiana and two counties in Ohio with an approximately combined coverage area of a 50-mile radius. Since this study involved reviews of patients' medical records, permission had to be granted by RHHC through the letter of cooperation (Appendix B). It included signed statements acknowledging familiarity of the research's function, a detailed plan for collaboration, outlined responsibilities, and consent by a recognized official representative of RHHC. Part of the letter also specified opportunities to ask questions that were provided to the RHHC official signatory. Procedures Recruitment Recruitment of participants involved seven processes: secure contact and recruitment permission approval flyer dissemination RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE prospective participants responses teach-back method for comprehension competency screening medical record review for inclusion criteria 24 selected participants notification scheduling of consent signing and semi-structured interview Since this study involved reviews of patients' medical records, permission had to be granted by RHHC corporate authority. The burden of responsibility, ensuring patients' rights and privacy are respected and protected, falls onto the researchers. As an employee of RHHC, it was incumbent upon the PI to follow ethical prudence by pre-disclosing any activities outside of employment boundaries. Therefore, full disclosure of the study and acquisition of permission from the corresponding authorities at RHHC was the first step in the recruitment process. A letter of cooperation was drafted and sent to the corporate head of clinical services of the parent company of RHHC (Appendix B). It included a concise description of the research project, processes established to uphold bioethical principles (autonomy, justice, beneficence, nonmaleficence), participants' identity protection, affiliated institution, and the HRPPIRB involved. Part of the letter also specified opportunities for the authorized person to ask questions. The PI secured signed statements acknowledging familiarity of the research's function, a detailed plan for collaboration, outlined responsibilities, and consent by the corporate privacy officer of RHHC before contacting and recruiting prospective participants (Appendix C). This study used flyers to disseminate information and request participation (Appendix D). Information on the flyers consisted detailed summary of the study purpose, confidential methods, duration of commitment, and the PIs contact information, all written at 5th-grade level readability. The U.S. Government Accountability Office (2006, as cited in Stossel et al., 2012) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 25 suggested that Medicare beneficiaries, on average, read at the 5th-grade level. As such, the Flesch Reading Ease (FRE) readability formula was employed to ensure the flyers' written contents were at the 5th-grade level to be clear, simple, and easy to understand. It is a commonly used assessment formula that ranks the reading difficulty of written documents using a 100-point scale with higher scores correspond to easier readability, and fifth-grade level readability is at 90-100 points (Zamanian & Heydari, 2012). The FRE readability formula is integrated into the Microsoft Office 365 Word processor the researchers used to create the participants' required written documents, such as flyers, consent forms, interview guides, and transcripts. The flyer clearly stated that eligibility would be confirmed via a review of the potential participants medical record. The solicitation of permission to review patients' medical records complies with the Health Insurance Portability and Accountability Act mandate to protect the patients' privacy, confidentiality, and autonomy (U.S. Department of Health and Human Services, 2013). Also included in the flyers was an explicit statement emphasizing that participation in the study was not connected to their care and would not affect the health services provided to them by RHHC, whether they chose to participate or not. Since the participants in this study were actual patients, the health care services received from RHHC would be expected to influence the accounts of the participants' experiences. Therefore, participants selected were patients who received services from RHHC within a specific time frame. For this study, December 2020 to July 2021 was the period selected for recruitments to ensure uniformity of participants' shared lived experiences with RHHC during the COVID-19 pandemic. The PI asked clinical coworkers (registered nurses, licensed practical nurses, physical therapists, physical therapist assistants, occupational therapists, certified occupational therapist assistants, speech-language pathologist) to help deliver flyers and give a brief general RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 26 explanation of the intent of the flyers to new and current patients (potential participants) during scheduled appointments. Before requesting their help, the PI gave coworkers a detailed explanation of the study's intent and the flyer's purpose in recruitment. Along with the standard patient orientation literature, flyers for this study were included in the start-of-care (SOC) folder provided by RHHC to new patients on every admission visit. In the home health care setting, a registered nurse, the physical therapist, or the speech therapist are the health care professionals who can conduct patient admission visits (SOC). The SOC folder includes pieces of information necessary for patients' orientation to home health care services. It includes RHHC contact information, explanations of Medicare guidelines, patient's bill of rights and responsibilities, COVID-19 education, a calendar for scheduling visits, and disease-specific management pathways. The admitting healthcare professional explain all information included in the SOC folder. For patients RHHC already admitted, flyers were handed and explained by all of the PI's clinical coworkers to the patients. Each prospective patient was requested to notify the PI by phone within one week of receiving the flyer if they were interested in the study. A one-week time frame was chosen to allow enough time for the potential participants to ponder alone or with assistance from caregivers and make the appropriate personal decision about whether to participate or not in this study. The flyer's contents also included an instruction to call the PI for clarifications and questions at any time. The PI also contacted potential participants who had not checked in after a week and determined their decision. To ensure that participants could give informed consent, the PI used the teach-back method to screen for the study's comprehension. The teach-back approach allows participants to be prompted to explain or summarize the provided information (Yen & Leasure, 2019). Chin et al. (2015) suggested conscious reasoning and understanding are RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 27 dependent on well-functioning mental processes that involve memory recall and analytical thinking (Chin et al., 2015; Yen & Leasure, 2019). Therefore, participants who summarized the study's purpose successfully based on the flyers' information were determined to demonstrate a sufficient understanding of the study and deemed competent to provide consent. This process also confirmed participants fluency in the English language. The PI reviewed participants' medical records who passed the teach-back screening against the established selection criteria as the final step for inclusion in the study. The medical records compiled, secured, and protected by RHHC include comprehensive demographics, physician-confirmed medical diagnoses, and the spoken languages of each of the patients. After criterion selection screening completion, the PI notified potential participants whether they were selected or not for the study, that the consent procedure, then the semi-structured interview, was next in the research process over the phone. The PI explained to the participants that an information sheet containing a simple summary of the purpose of the study, the methods involved, date and place, length of participation, and consequences, would be used for informed consent for this study in the same phone call. Agreement to the semi-structured interview meant consenting to participate in the research study. The semi-structured interview was held two weeks after the selection completion and notification. Informed Consent A study information sheet was personally delivered to selected participants under the PI's direct care during scheduled appointment visits and mailed to those who were not, at least one week before the interview (Appendix E). The one-week period provided ample time for the participants to review the information sheet's language and meaning ahead of the interview. The participants were also instructed to call the PI for any questions and clarifications before the RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 28 scheduled interview. The COVID-19 mitigation protocols, such as wearing masks and gloves, were followed when preparing and delivering the information sheet documents. This study employed Kadam's (2017) process of acquiring unbiased and objective informed consent, which involves full disclosure of information, competence, understanding (comprehension), and self-determination (voluntariness). Kadam (2017) suggested that researchers write detailed explanations and descriptions of the study's purpose and methods in simple and understandable language devoid of sophisticated and technical vocabulary. This method ensures comprehension, including the risks and benefits of participating in the study (Kadam, 2017). Verbal informed consent instead of signatures was used in this study to confirm authorized voluntary agreement to participate to avoid gathering identifiable information. Obtaining verbal consent was conducted under the UIndy IRB committee's approved process. An information sheet was used as the consent document, which included steps to protect privacy and participants' right to decline to answer any interview questions and withdraw from the study at any time. The information sheet document included statements that reflected respect for cultural norms, religious convictions, political ideology, and social issue sentiments (Creswell & Creswell, 2018). Also included was an explicit statement emphasizing that participation in the study was not connected to their care and, therefore, would not affect the health services provided to them by RHHC. The information sheet also stated that participants understand the study's purpose, risks, and benefits to willingly consent to participate verbally. The interview was conducted after verbal consent was obtained. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 29 Data Collection Process This study's primary data collection method was an individual semi-structured interview with each participant, directed by an interview guide (Appendix F). DeJonckheere and Vaughn (2019) posited that a semi-structured interview offers a relaxed atmosphere for discussion and consists of open-ended questions that motivate participants to share the essence of their lived experience of the studied phenomenon. The PI offered to interview in a place providing safety, security, and privacy for both interviewee and interviewer. Since the pandemic was still active during consent acquisition and interview, the participants were given options to meet face-to-face in their homes or remotely via video conferencing. All participants opted for a face-to-face meeting. Therefore, both the PI and the participants strictly followed the CDC COVID-19 mitigation protocol. The temperature of both the PI and participant were taken, mask-wearing, hand washing, hand sanitation, and at least six feet distancing were enforced before the start of the process. All devices used during the interview, such as a thermometer, stylus pen, and digital tablets, were sanitized following CDC guidelines. Participants were allowed to state answers to each question for as long as needed until the interviewee had no more experiences to share. The interview length varied, with 25 minutes as the shortest and 61 minutes as the longest. At least three digital audio recorders (DAR) recorded the dialog between the participants and primary researcher during the interviews. The interview questions were designed to encourage rich and deep responses, involving in-depth information concerning this study's primary focus. The interviewer began the interview with broad questions about the participants' lives before and after COVID, followed by more focused questions about critical aspects of their lives such as social, shopping, recreational, RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 30 physical fitness, and health care habits and activities during those periods. The follow-up questions focused on the perceptions about changes the COVID-19 pandemic caused in the participants' way of living and the impact of social isolation. The final question explored participants' recommendations and suggestions about how health care providers and public health officials could be better prepared to help rural CDOA meet their health care needs during the next pandemic. Before ending each interview, the PI informed the participants that a two-part memberchecking process would be scheduled, with the first check taking place two weeks after the interview. The interviewer explained that the first part of member-checking is a process by which the recorded interview would be transcribed (recorded voice made into a written record) and sent to the participants for feedback to account for the accuracy of transcription of the shared lived experiences (Creswell & Poth, 2018). Member-checking gives the participants a sense of authority, ownership, and control over their responses (Merro-Jaffe, 2011). The printed copies of the transcribed interview were sent to the participants by regular mail or email with instructions for them to read their answers and make appropriate changes carefully. Included with the printed transcripts were instructions to the participants to underline or circle words or phrases that need corrections, then write appropriate changes and comments above or below the terms to be adjusted or in the transcription's right-hand margin (Appendix G). Another option was to number the circled and underlined words and phrases for corrections, then write the corresponding changes and comments on a separate paper. Once changes were completed, participants were advised to mail back the printed transcriptions with the amendments using the prepaid envelope provided. If verbal corrections were preferred, options to make changes face-to-face or by phone were provided. Participants who opted to receive the RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 31 transcripts by email were instructed to make the changes using Microsoft Word's "track changes" tool, then email back the transcripts with revisions to the research investigator. If needed, the PI planned to provide lessons or instructions on using the Microsoft Word "track and change" tool to make comments, suggestions, and revisions. Only one of the participants chose to accept the transcripts through email, and the rest asked to have the transcripts sent via postal mail. Data Management and Analysis Audio recordings of the interviews were uploaded to a password-protected computer and removed from the digital audio recorder immediately after each interview. The uploaded data was transcribed using Temi, an app that provides audio to text transcription. Temi uses the highest encryption level protection for storing and transmitting data. The transcribed data was cleaned and de-identified, then downloaded and exported as Microsoft Word documents. The PI sent the transcripts of interviews to each of the corresponding participants for the first memberchecking. Participants' corrections, revisions, and additions were then added to the transcribed data. Dedoose (version 8.3.35), a qualitative data analysis software program that allows collaborative work and offers high-security protection, was used for data analysis. The data analysis process for this study was patterned on Colaizzi's phenomenological data analysis approach (Figure 1) that includes seven phases (Morrow et al., 2015). To make meaningful interpretations of the data and strengthen this study's credibility, two researchers (coders) engaged in the data analysis process (Creswell & Poth, 2018; Henderson & Rheault, 2004). The researchers met initially to come to a mutual understanding of the study's aims, objectives, and purpose before initiating data analysis. Having a shared perspective provides coders a good contextual foundation for interpreting data and producing complementary themes. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 32 Repeated readings of each participant's initial transcripts to develop a deeper understanding and familiarity with the lived experiences served as the data analysis first phase. The second phase involved drawing out specific phrases and sentences from the participants' transcribed interviews with distinctive characteristics and substantive meanings related to the study's research questions and aims. The researchers initially completed this process individually for each of the participants' transcripts, then later compared findings for agreement of statements, expressions, clauses, and sentences that closely described lived experiences related to meeting the rural CDOA health care needs. The qualitative analysis process, specifically the code cooccurrence and code application function of Dedoose, was used to compare the researchers' findings. Since raw data was the primary source of information in this study, the deconstruction (winnowing) of information into concise but meaningful phrases was guided by inductive analysis or open coding (DeCuir-Gunby et al., 2010). In the third phase, the extracted phrases, and sentences from phase two were assigned descriptions for distinctive categories and characteristics, which served as the initial themes. At this stage, since these are preliminary themes, the descriptions used had broad meanings. Also, in this third phase, the researchers created a codebook (Table 2), which was used to promote dependability since it was based upon the agreement between multiple researchers (DeCuirGunby et al., 2011). It also served as a reference guide for the researchers throughout data analysis and provided transparent justification for the selected codes. In stage four, the researchers repeated the processes from phase one to three for each transcribed participant's interview. This stage narrowed down the broad themes produced from phase one to three into all-embracing (final themes) representations of the participants' shared lived experiences (Table 3). The themes were examined for associations and relationships of RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 33 their descriptions. The initial themes with close association were grouped to form final themes with corresponding sub-themes, and themes found to have no relationships with other themes were established as part of the final themes. Comprehensive descriptions of the final themes characterized the fifth phase. The researchers made in-depth interpretations of the final themes that provided a deeper understanding of the participants' perceptions of how the COVID-19 pandemic affected the ability to meet their health care needs. The refinement of the exhaustive interpretations of the final themes characterized the sixth phase. Through coordinated repeated reviews, the researchers corrected any redundant, misinterpreted (under- or over-interpreted), unnecessary, and superfluous descriptions. This process allowed in-depth but concise descriptions of the final themes. Revisions were also added to emphasize how the interrelationships of the final themes represented a deeper meaning of the shared lived experiences of the participants related to meeting their health care needs during the pandemic. Finally, the seventh phase involved the second part of member-checking. The final themes were the researchers' interpretation of the essence of the participants' lived experiences related to the study's purpose through comprehensive data analysis using Colaizzi's method. The second member-checking was completed to gain participants' feedback and validate the researchers' interpretations of their shared lived experiences. A narrative summary of the final themes was created for the participants, and it was written in simple words, phrases, and statements for easy readability (Appendix H). Similar to the process used for the first memberchecking, the narrative summary was sent to participants via postal mail and email with a letter of instructions for responding (Appendix I). It took a total of sixteen weeks to develop the narrative descriptions of the participants' interviews. The research coders spent thirteen weeks on RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 34 data analysis to produce the preliminary narrative descriptions. All the research project members spent another three weeks collaborating to ensure that the developed narrative descriptions were the closest possible interpretations of the participants' shared lived experiences related to meeting their health care needs during the COVID-19 pandemic. All participants' responses were received in two weeks. Rigor and Trustworthiness Qualitative researchs reliability and validity depend on the studys trustworthiness or rigor (Morse et al., 2002). Absent the integrity or precision, research studies purpose becomes useless assumptions (Morse et al., 2002). This study adopted Gubas Model of Trustworthiness, which has four criteria: credibility, transferability, dependability, and confirmability (Henderson & Rheault, 2004). Member checking, wherein the participants review, substantiate, and, or modify the interpretations of the accounts of their lived experiences, was used to attest the credibility of this research study project (Cresswell & Poth, 2018). Each participant scrutinized their own experiences on the initial transcripts of the interview and its final interpretations, ensuring that member checking was personalized (Morse et al., 2002). Transferability was addressed by deliberately designing the studys context, sampling strategy, sample population, demographics, study design, inclusion, and exclusion criteria to represent the general rural CDOA with multiple chronic diseases population during the COVID-19 pandemic (Korstjen & Moser, 2017). An audit trail, or methodical description, of the research method processes from preplanning, choice of health issue and setting, participant selection, interview, transcription of data, coding, and interpretation of results appraised this studys dependability (Henderson & Rheault, 2004). Expert scrutiny of the audit trail was employed to strengthen this research studys RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 35 dependability (Henderson & Rheault, 2004). The research committee members of this project provided the expert examination of the audit trail. The triangulation method was used for confirmability in this research project (Henderson & Rheault, 2004). At least two research investigators (coders) with expertise on the phenomenon being studied analyzed the same data (Fusch et al., 2018). The PI and an external researcher are both experienced healthcare providers for the population and phenomenon studied, served as the investigator triangulation sources in this study. The PI and the external researcher, acting as coders, collaborated in data analysis and corroborated interpretations repeatedly throughout the seven-step process of Colaizzi's method, ensuring the accuracy of results. Some of the participants in this study were patients of the PI (interviewer). Understanding individuals medical, physical, and mental conditions, especially older adults, to provide or facilitate appropriate health care services defines the interviewers professional work. Familiarity with participants chosen for the interview and problems related to their health care issues facilitated natural and cordial interactions during the interview. However, these situations created a potential bias on the interviewers part. Since the PI was acquainted with some of the participants health issues and is an experienced health care provider, the risk of unintentional acts of posing leading questions was high. To enhance credibility, the researcher also used bracketing in addition to Gubas Model of Trustworthiness. The PI addressed concerns regarding bias by bracketing in three ways. First, the PI clearly and fully disclosed his profession, familiarity with some participants, and affiliation with the home health agency (RHHC) involved. Revealing the investigators background related to the phenomenon, it allows the public to discern whether participants shared their lived experiences were uninfluenced by the researcher (Creswell & Poth, 2018). Second, the interview RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 36 guide used, which experts vetted, included questions that deliberately evoked participants lived experiences and elicited personal responses related to the phenomenon. Third, Colaizzis phenomenological data analysis method provided a process that allowed the data to draw more profound and meaningful interpretations of the participants experiences without researchers (coders) personal perspectives interjections (Figure 1). Results Ten rural CDOA who met the criterion sampling requirements participated in the interview for this study (Table 1). All participants chose their own homes for the interviews, which lasted 25 61 minutes in length. Participants included eight females and two males with at least three chronic medical diagnoses and ranged from 65 82 years old. Eight of the participants live in Indiana, two in Ohio, and all received home health care services from RHHC. Based on their shared lived experiences through interviews, the participants in this study were presented with new challenges due to the COVID-19 pandemic related to meeting their health care needs. However, they showed resiliency, resourcefulness, perseverance, adaptation, and reliance on faith to overcome the barriers imposed by the COVID-19 pandemic. Following rigorous analysis of the data using Colaizzi's phenomenological method, the main themes reflecting participants' perceptions of factors affecting the ability to meet their health care needs were Lifestyle Changes, Health and Wellbeing, Access to Health Care Services, and Use of Technology (Figure 2). Each theme has sub-themes. Ironically, the ordered safety measures during the COVID-19 pandemic, including the stay-at-home mandate, social distancing, and mask-wearing that were supposed to protect the health of everyone, including the rural CDOA, were perceived by participants as barriers to meeting their health care needs. Participants' experiences suggested that the mitigation mandate RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 37 and protocols were the predominant causes of the adverse changes in their Lifestyle, Health and Wellbeing, and Access to Health Care Services. These adverse changes to certain aspects of their lives encouraged the use of technology for healthcare services access, social connections, hobbies, and entertainment. In the subsequent discussions of themes, some of the participants' accounts implied that the mitigation mandate and protocols caused a significant decrease in physical activities (lifestyle changes), which exacerbated participants' chronic conditions (health and wellbeing), necessitating access to health care services (appointments, treatment, interventions, pharmacology) using technology (Figure 3). Also common to most of the participants' reflections is that the mitigation mandate and protocols prompted isolation (lifestyle changes - limiting socialization) that led to depression (health and wellbeing - mental and emotional stress) and forced participants to use coping mechanisms such as increased use of technology (social media, genealogy, streaming videos, virtual conversations). At the end of the interview, participants were asked for advice on how health care experts and government authorities could best help rural CDOA in the next pandemic. The probing question elicited a variety of recommendations that encompassed multiple sectors of society related to health care. Participants also recognized their responsibilities to be well informed and cooperative with safety mandates in a healthcare crisis. Theme 1: Lifestyle Changes Physical Activity Most of the participants felt physical activities became restricted and limited, affecting the drive to stay active. My motivation to be physically active has really been affected that I dont want to do nothing. I just want to lay around all the time and sleep, and I have to make RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 38 myself get up and do stuff (231008). Walking with friends at the park abruptly halted. Oh, my friend and I used to go up to Devin Park, and we used to walk around to the ball diamond, but that stopped (020218). Routine daily activity such as walking the dog was put on hold. Oh, Im terrible. I walked my dog all over the neighborhood, and now I cant even walk my dog. And that is frustrating because Im tied in the house. Its like, somebodys got a rope tied around me and say, youre physically not able. And youre useless. (231008) However, for another, dog walking continued but carefully kept at a distance from others. I would still take walks around the neighborhood, and I did not wear a mask. I felt like the fresh air was important for me. Exercising absolutely was necessary for my back problem at the time. I usually walked alone with my dog, but I was seeing neighbors up and down the street. And if they would come out and talk, we would visit, we would keep our distance. I dont recall wearing a mask at that time because I felt like I was in the fresh air, and we were far enough apart. Had they come closer? Yes, I would have put my mask on. (100319) Socialization The participants' experiences suggested that the COVID-19 pandemic affected their health and wellbeing and touched every aspect of their lives. There are certain parts of life participants mentioned that affected them more deeply than others. Participants knew that the mitigation protocol affected local business establishments' commerce, and their shared lived experiences reflected this sentiment. They felt a strong sense of responsibility and belongingness to their communities and made efforts to help their local community business establishments buy buying most of their necessities locally. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 39 if there is something I can buy in town, I try to buy it in town because I want to keep as many businesses here as possible. (130108) ... we have used the community more. Uh, weve been ordering meals in, from local restaurants in town that are healthy. Um, we have like the Krogers program. (100619) One participant described an instance of taking the time to write and send out occasional (birthdays) and general greeting cards to members of her church community to show support and encouragement. I try to, with my church group, I try to every week write at least three cards and send them to people just saying, thinking of you, or, you know, its your birthday happy birthday or whatever, because I feel like were not being able to gather in church were so out of touch and the church family is, you know, it was an important part of my life. (130108) Attending churches for worshipping and fellowship could not be practiced. Bible study, singing in church, Wednesday night, neighbor nights dinners at churchwe would go to church on Sundays...we were active... we had a Bible study that we were active with, and I was a worship leader at a church sang with the church...and that had to all stop. (100619) Some participants perceived that not practicing faith in their church is akin to losing the freedom to control certain aspects of their lives. by not being able to have something I want to get out and go to, it has been hard to set goals, to, you know, to try to strive, to get to a place where I can do this or get to a place where I can do that because they're outside of the house... well, more like going to church. (130108) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 40 The surge of COVID-19 infection from new variants and compliance with mitigation protocol club activities were suspended, which affected some participants' active social lives. I had a very active social life through my church, through my sorority through Helen Hunt club, uh, played Euchre once a week with a Euchre group... (130108). Some participants described that missing regular family get-togethers affected them terribly in a mentally and emotionally stressful way. I have a very large family and we got together once a month, all of us at our, my house. And theyd hardly be room to walk through the people and it abruptly stopped with this (COVID-19 pandemic) its one of the most horrible experiences in my 81 years, because Im eighty-one I live alone, and nobody can come and visit meIt changed family life. Its like, I can say for this whole time, I havent got to see part of my family and Ive got a granddaughter, like shes got five children and her sister has one and they got new babies during that time that I didnt get meet I just didnt feel comfortable to be around the kids because I didnt want to make them sick, but they were all staying away from me for fear making me sick. And it was miserable. (050820) For other participants, family gatherings, especially during holidays, added significantly to feelings of emptiness. "... Thanksgiving and such... could not do it because that would have been too many people... we're afraid to go, um, because we didn't have shots then... the holiday was missing...it was a big hole... And, um, that affected me (100619). However, some participants continued to meet with their loved ones but followed CDCs mitigation protocol. I continue to see my family that lives close, and we would observe the COVID-19 suggestions, you know, as far as wearing the mask washing, et cetera, et cetera, not hugging, not touching, but, uh, it didnt stop us really from getting together. We, we kept RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 41 our distance. We didnt hug, we did the fist-bump and the elbow-bump, but, uh, I cant say that I stopped seeing them. I did not, but we were very cautious. (100319) The sadness of not being with friends enjoying things they love to do, such as eating out, was expressed. I would go to dances or stuff or listen to music, meet with friends for go out and have dinner or something and all that come to an abrupt stop. (050820) I felt like I was a prisoner. Uh, couldnt see any of our friends and it effect it from the beginning to the very end and from the top to the bottom. (100713) ... it made me appreciate being able to be with family and friends. It made my life very lonely and still is to some extent, you know. (160919) Some participants' reflections insinuated that the inability to do mundane things that seemed simple and generally taken for granted, including face-to-face social interactions with friends, adversely affected their disposition. you know, you can talk on the telephone, but talking on the telephone is not hugging. Somebody talking on the telephone is not crying with somebody and talking on the telephone, although you can pray, it doesn't have the same intensity as when two or more people get together and pray together. (130108) One participant allowed visitations but was mindful of the mitigation protocols. at home, I, get, uh, visits from friends and, and family, and, uh, um, where, I can wear a mask here and at least see my family, or be with friends (130419). Shopping Habits Shopping habits were disrupted, and participants depended on other people to get their shopping necessities due to fear of being out in public. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 42 Before I, I did it on my own. I went to the grocery store, like any other person went shopping, but when COVID come around, I stopped. I didnt go anywhere. I stayed at home. My family did my grocery shopping. (020218) Nothing is open and, uh, I have to take my walker, or I have to have my wheelchair. And when you get out a bunch of people that dont wear their mask, so I quit going. (231008) Nevertheless, some participants continued to do their shopping but rigidly followed the mitigation protocols. Once they issued the warnings, I chose to be cautious to be careful. So, once they said to wear the mask, Ive worn the mask (100319). One participant regretted the decision to go out grocery shopping during the pandemic. Everybody picks it up and it looks at and turns it over. And then they reached behind the mask, rubbing their nose. So, Im trying not to do that when I see them doing it. But you dont know who done it before you got there and um, yeah, it kind of grossed me out and I went to Kroger one day and I got sneezing. I sneezed, I dont know how many times, all the way down, one on up the other. I finally, I just went through checkout. I got out of there before they kicked me out. (050820) Others started shopping by phone, online, and by using an app. ... we have been shopping by phone, um, and TV and then just typing. Yeah, computer... weve gone to Krogers Instacart (App), and they do our shopping and bring it to us (100619). The experience of delayed online ordered items frustrated one participant. ... a lot of reliance on online shopping, but I did that before. The only thing thats changed at the latter part of the pandemic was the whole mail situation in regard to online shopping. Because last year, at this time, you were still able to get things quickly, RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 43 especially youve got them from overseas. Now. Uh, what previously took two months is out to six months. (180503) One participant shared a disappointing experience from being forced to shop online for the first time because of the pandemic. I shopped in the stores mainly I didnt do much online at all because Im not very good on the computer, uh, um, my son calls me digitally challenged. Since COVID-19 I have a friend that would go and get groceries for me. Also, at the department store. I started buying online, which got me into trouble because Im not, good at using the computer. I got caught up in Wish. I dont know if you know what Wish is, yeah. And getting caught up in that was not good. Um, it sounded like a good thing, but then when I started getting the merchandise from there, a lot of the things were too small and you know, not what they showed. So, its been more confusing for me that way. (160919) Entertainment/Recreation In general, entertainment and recreation enjoyed out of their home alone or with family and friends were unable to be practiced during the pandemic. ... most of my recreational at that time was going out to eat prior to the COVID, uh, after doctors appointments. And so on, I would go to Menards or, spend the day out, uh to go to, uh, restaurants or, something of choice. But since Im home, recreational and entertainment has been the radio... dialing up on my cell phone, uh, comedians (streaming video) and so on, so forth. (130419) the churches were closed. The restaurants were closed. Theaters were closed, movies, uh, pretty much everything and people couldnt come in to visit. So pretty much isolated. (100713) I used to go to the Druids club, and RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 44 they dance had music there, but, uh, that just none of that could happen during that time. (050820) A participant who enjoyed exciting rides expressed disappointment. I guess you call it an adventure junkie. I like, amusement parks. I love roller coasters and I got my boyfriend to go to Kings Island with me. We even bought a year pass, which was bad cause COVID hit. And then we couldnt, we only got to use it once. Um, but, uh, our biggest thing we wanted to do before COVID hit and we didnt get to then, and now were waiting till we can, is going zip lining. So, I want to go zip lining. So, even though I have, uh, health problems, my, my son said mom, you cant go on roller coasters because, you know, I have heart problems and so forth. I said, you know, what, if I die, I die, happy doing something I like. ([laughed]160919) Theme 2: Health and Wellbeing The lifestyle changes experienced by the participants forced by the mitigation mandate and protocols also impacted their health and wellbeing. The aspects of health and wellbeing affected were mental/spiritual, medical conditions, and outlook on life. Also, participants perceived that some general and routine parts of life were adversely influenced by changes in lifestyle during the pandemic. To overcome these health and wellbeing challenges, the participant adopted coping mechanisms. Mental/Spiritual Participants pointed out that the effects of mitigation protocols made them feel isolated. it was the frustration that came from the isolation of wanting to go and wanting to do something and make it better, and you couldnt do it there is no substitute for the personal touchIt made me feel cut off. (130108) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 45 Some expressed the feeling of abandonment. You want to feel useful. You want to feel needed. And I think that feeling of theyre too busy for you. They dont have time for you. So, youve got to make your own life. You got to stay active, creative, get out there and live. (100319) The isolation and abandonment led to feelings of depression. the depression of not being able to see your friends and to get out, um, puts a big wall between, how do you pick yourself up when you want to go, and you cant get off, its like the door is locked and I have to stay in here, and everybody else is outside having a good time. (100619) Mental stress was also a common adverse effect shared by the participants. I felt like I was a prisoner. I couldnt see any of our friends I just got really depressed. I craved fresh air. I missed my independence (got tearful) felt like I had no control at all (100713). Also, some participants viewed social distancing, stay-at-home, and mask-wearing infringed on their freedom to do usual activities. I felt like I wasnt able to make, decide what I wanted to do or whether I could, when I want it toit made my whole life, kind of in a sad thing to me, since I am an outgoing person and most of the time and, uh, the older you get, I think the worst it gets you. (050820) Spiritual emptiness was experienced since religious services were stopped. I was a worship leader at a church sang with the church, um, and that had to all stop because not only of the virus, but I have, I might as well say it. I have end-stage renal (failure). Um, Im diabetic, um, just some medical problems, and then the leg (left below- RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 46 knee amputation) didnt help. Um, its hard going out, and then youve got that fear of picking up something. And, um, so just lots of issues. (100619) Medical Conditions Impacted the Most When asked what medical condition was affected the most during the COVID-19 pandemic, one response was, My COPD (chronic obstructive pulmonary condition) because I cant get to the doctor when I need to (231008). Some believed mask-wearing caused or aggravated respiratory illnesses. The mask made chance of getting anything stronger. (050820). While others feel it was a necessary practice to prevent the spread of COVID-19 infection. Well, it didnt bother me. It didnt bother me a bit because I feel like if we want to get rid of it, we gotta follow the house rules and the health laws (231008). Another participant implied a direct impact on health conditions. I guess blood pressure mainly because Im so... kind of on edge all the time it seems like, which isnt good for anybody around me. (100713). Advanced degenerative joint disease primed for surgical interventions postponed due to the mitigation mandate and protocols and personal fear from acquiring the infection made the participant endure debilitating pain. about my shoulders that was giving me pain. I couldnt sleep roll over at night. They hurt and everything. And, uh, I finally got sick enough that I got painkillers and stuff. And so, theyre not bothering me now, but that was terrible too because twice I got ready for surgery and didnt go. And then when they call me to go, it was like one of the first people they called and it was like, no, its a hospital full of people dying. (050820) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 47 Outlook on Life Most participants expressed an optimistic outlook of their health situation and life overall. Acceptance, compliance, and resilience (toughness) are characters that some participants perceived helped them get through the pandemic. Just do it, you know, we cant, dont have a choice. Um, you make the best of what you got. I dont know any other way to put ityou do what you gotta do day by day. Try to make the best of it. (100713) Other participants recognized the need for lifestyle changes but did not allow fear to rule their lives and decide their fate. My whole outlook on life is wow! Im ready to get out there and live again, with or without the pandemic. Its not going to stop me from doing, you know, what I can do. There are limitations, I know, but life looks good. I have a good outlook on life. (100319) Participants expressed awareness that what they lived through and endured are teachable moments that would help them prepare for the next health crisis. I think going through this, this epidemic, all of us have learned what needs to be done and how we need to follow the directions and the rules and cooperate with each other (100619). Some realized and acknowledged that having a negative attitude is not helpful to their health. Oh, I try to keep a positive attitude, and I have days that I dont feel very positive, you know, but I try to keep a positive attitude. I try to keep a smile on my face instead of being a grump all the time and hollering about how bad I feel. I tried to make myself get up and exercise because if I just sit up all the time, I just feel worse. So, Ill get up and walk around through the house, and I messed around like that. (231008) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 48 Trust with their doctors knowledge of the COVID-19 and skills to help participants recover if infected eased the worry, stress, and anxiety in living their lives. I didnt really think about, was I going to get COVID? I thought if I do, and my doctor was so awesome, he gave me, um, confidence from the get-go that even with my health issues, my health was, he felt strong enough and good enough that even if I got it, I would be okay... Thats my faith. And I have a lot of faith, a tremendous amount of faith in my doctors, and they felt we were on the right track and to move forward. (100319) Some recognized that the unexpected challenges imposed by the pandemic made them have a better appreciation of things in their lives. I think with the way COVID-19 hit us so unaware and everything, that we handled it the best we could. I really doBut its getting more back to normal. And my outlook is I appreciate things a little more. I really do. (160919) However, one participant perceived the mandated safety measures as intimidating and controlling. that stay-at-home thing... has made me feel like, is it ever going to stop because theres going to be some people scared to death from now on. And I think when they scare you, they can control you. And I dont like that. I dont like the way that makes me feel. So, I guess at least me not having as much good outlook for my kids in the future as they would have had. (050820) Coping Mechanisms Coping mechanisms were employed to overcome medical, psychological, and physical deterioration. Participants turned to humor and laughter to cope with loneliness. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 49 I think that maintaining good humor and thats not always easy (laughter)Just tried to have good humor (laughed)... you know, just laugh about it if you can. And just know that there is light at the end of the tunnel, and youre getting there. (130108) Entertainment through audio-video streaming on a smartphone was used to help pass the time. I would listen to comedians and so on...entertainment, such as the Red Skelton and old-time comics, Moms Mabley and other groups (130419). Some wrote greeting cards and letters of encouragement to friends and church members to feel useful. I try to every week write at least three cards and send them to people just saying, thinking of you, or, you know, its your birthday happy birthday or whatever, because I feel like were not being able to gather in church were so out of touch and the church family is, you know, it was an important part of my life. (130108) Others noted that telephone use to reach out to friends and family members was still effective in filling out the time. I still call people and talk to people on the phone (020218). Some participants walked in their neighborhood and interacted with neighbors to stay physically active and emotionally and mentally engaged but were also observant of the mitigation protocols during the activity. I would still take walks around the neighborhood with my dog. I saw neighbors up and down the street, and if they would come out and talk, we would visit but keep our distance (100319). Taking up a new hobby using computer research kept the other participants busy. Well, I do genealogy, so I work on my computer on genealogy, and I talk to the kids on there and I like to go back and read history and stuff like that on the computer. I like to research people and research things. And that has been mainly my entertainment because I cant get out of the house, and nobody comes by. (231008) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 50 Theme 3: Access to Health Care Services The participants shared lived experiences elicited common concerns and needs related to accessing health care services during the pandemic. These issues are reflected in the following five sub-themes: appointments; health care needs, interventions, and treatment; pharmacology; support system; and financial limitations. Taken as a whole, the accounts of the participants showed interdependence of these issues. Technology and the mitigation protocol also impacted participants ability to access health care services. Appointments All participants mentioned some degree of difficulty and reservations with keeping and attending medical appointments. Participants cited transportation as one of the main concerns related to accessing health care during the pandemic because of the impact of the mitigation protocol. Those who could not drive even before the pandemic and some who otherwise could drive but due to age-related issues, chronic medical problems, and recent surgical interventions expressed worry due to the uncertainty of not finding anyone to drive them to health-related appointments. Before it was no problem. Just make an appointment, get in the car, drive to it and take care of business... for some reason because of the pandemic, all of a sudden, I was not supposed to drive any (100713). However, participants were able to find paid services to take them to appointments. before the COVID 19 pandemic, I would drive myself to doctors appointments, medical tests, Im very lucky to have a lady who works for me, who is very flexible, and her husband is very good to pitch in too sometimes. And she was able to take me to whatever medical things I had to do in Richmond or wherever and take me to them. (130108) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 51 Participants stated that public transportation continued to operate. ...we have Preble County transport, which takes me to all of my doctor appointments waits with me... brings me home (100619). Some relied on friends to take them to their appointments. I have a friend that takes me all the time to, to my appointments (130419). Others depended on family members. My daughter and her husband took me to all my appointments (231008). Some participants deliberately held off in seeking medical consultation due to fear of being admitted to the hospital or nursing home where chances of acquiring COVID-19 infection are more significant since it is full of people infected by COVID-19. I had a lot of trouble with my shoulders... and I needed them replaced. I was going to do one arm, the left one first, and then the other one, all prepared. They called and canceled because of COVID, and they called back, and they rescheduled it and they canceled it again. And so, while the COVID was going big and everybody was dying, I get a call. I can come in now. And I said, no, Im not going to be the first one to go in. I dont believe in all this COVA stuff, but Im not going to flirt with it either. (050820) One participant experienced punctuality from the physician instead of the usual long waiting time from the scheduled appointments before the pandemic. I tell you, going to the doctor has been so much more convenient, and quick. It seems like when you go now you have a specific appointment. You dont sit in the waiting room for two hours when its time to go in, they take you in your appointments done and your home in the half hour, 45 minutes. And Ive often wondered why couldnt they do that before? (100713) Another experienced difficulty scheduling appointments, including with specialized healthcare providers, during the lockdown. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 52 I took the quickest option I could by having the shots done at the primary care provider, instead of ortho, I would have preferred ortho because of the numbing spray that orthopedic office uses that the primary care physician did not. (180503) Health Care Needs, Interventions, and Treatment The interventions and treatment mentioned by the participants in this study were generally related to declining physical conditions (muscular weakness, decreasing endurance, joint stiffness, joint pain, muscular aches, standing balance deterioration), chronic disease management such as arthritis (knees and back), blood pressure, and gastrointestinal problem. Similar to general medical appointments, everyone experienced varying degrees of difficulty scheduling needed medical interventions and treatments. Most of the participants continued to schedule and kept their appointments for interventions and treatments for joint problems, dental, eyes, and medical conditions. One joint replacement participant expressed disappointment for being unexpectedly discharged on the same day due to the lockdown mandate. I had my first knee operated on my right knee, and while I was on the operating table, Richmond closed the hospital. And so, when I got back to my room, I was going to have one to one and a half days of physical therapy. And when I got there, they threw me on the walker and said, if you can walk from here to this place down here, were sending you home. And so, I had surgery at eight in the morning, and I was home by 10:30 in the afternoon on that first knee, believe me, I wasnt quite ready. (130108) One of the participants, a veteran who spent several weeks in a skilled nursing facility for rehabilitation after hospitalization before being discharged home, expressed frustration from the delay and limited physical therapy treatment. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 53 ...when I went to the nursing home was when it got worse was because I was confined to the room for six weeks, and on my own, ... I did not do any real physical therapy. And... I thought that I would get more physical training and physical fitness... (130419) A participant who has diabetes and received in-clinic hemodialysis, although the scheduled treatment continued uninterrupted, voiced frustration for a particular restriction established for COVID-19 mitigation protocol compliance. ... before the COVID thing. I could take a snack with me to dialysis. Now, were not allowed to do anything like that. So that puts you right on that edge of when I get home, Im just starved (100619). Participants voiced appreciation for receiving rehabilitation interventions and treatment from the home health care program. Physical therapy and occupational therapy have come to me, which I have really appreciated because it kept me from having to drive daily back to Richmond to be with a group. (130108). Also, participants deemed home health care invaluable during the pandemic because it prevented a health issue from having a possible severe consequence. I had a day where my blood pressure went extremely low. Fortunately, I had a healthcare nurse here at that time and called the EMT. I got to the hospital, and I got well. Had she not been here? I dont know. I might not be here today. (100319) The home health nurse served as a bridge between the patient and the primary care physician, reducing the mental stress of calling the physician and scheduling an appointment under the mitigation mandate. I love the communication between home health and the doctors... (the nurse) calls the doctor for me when my blood sugars are high... that allows the doctor to follow it, RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 54 address it and follow up with either an appointment to come in or a phone call that we need to change meds or do whatever intricate part of taking care of me. (100619) Also, the routine in-person visitations of the home health care agencys clinicians provided psychosocial support to the participants. If we hadnt had the people coming in (long pause, trying to hold off tears), wed have gone nuts... its that somebody checking in... you need those persons to know that theres a life out there (100619). Pharmacology In general, the participants expressed that they experienced no disruption in receiving prescribed medications. ...as far as the medications, if I run out, I call them, they call in prescriptions and Id go get it. Its about the same as it was before this pandemic. But at least Im not getting involved with a whole bunch of people (020218). Prescription drugs were picked up at the pharmacy. I continued to get my prescriptions filled at the local CVS. So, and none of that stopped (100319). Some participants received their medications by mail without problems. It hasnt changed immensely. I mean, I get, Ive always gotten my medicines through the mail (130419). Similar to appointments, most of the participants in this study depended on support systems available to secure needed medicines. Im very lucky to have a lady who works for me she was also able to pick up medications (130108). A participant cited that one of the values of home health care nurses during the pandemic was medication management. ... home health care nurse... calls my doctor... when we need to change medications... she is also here to explain medicine changes (100619). This home health care nurses service helped eliminate the possibility of the participants being scheduled for an in-person consultation, reducing the exposure to COVID-19. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 55 Support System As previously mentioned, the participants clearly expressed the significance and value of their support system in facilitating access to services to meet their health care needs. The support system received came from family, friends, church members, club members, home health care clinicians, and the local community groups and services, and it impacted all the facets of participants health and wellbeing. The local public transportation services were relied upon by some participants to get them to their medical appointments. I just call the County and ask them if they can pick me up. And Ive been fortunate that theyve always been able to take care of that for me (100713). The local grocery store calls participants for grocery needs and delivers them. the grocery store has called me at least once a week to see if theres anything they need to deliver. Uh, and so have the other shops. (130108). Friends helped in picking up prescription drugs. ...prescriptions either we pick them up, or friends pick them up for us (100619). Help with shopping was also provided by friends. Since COVID-19, I have a friend that would go and get groceries for me. Also, at the department store. (160919). The home health care services provided immediate intervention and treatment of medical problems. The home health nurse was very handy with me. She has been from the get-go... And she would call and check on me and talk to me from time to time, and I could always call her (050820). Participants also perceived home health rehabilitation to be valuable during the pandemic. Once a week, I had home visits by the occupational therapist and physical therapist, and we worked for about an hour. During those times we do walking, balancing, stretching for physical therapy and tying knots, doing things with my hands, keyboarding, writing with occupational therapy. I had to learn to write again. (100619) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 56 Theme 4: Use of Technology The use of technology (video and phone visits) promoted by medical providers to continue to provide health care services and, at the same time, follow the CDC safety measures is one of the factors that influenced the participants motivation and ability to access health care services. Participants accounts of experiences related to the use of technology during the pandemic revealed that it also had some utility for personal purposes. However, some participants could not participate in telehealth because of the prohibitive costs of digital devices and the necessary internet subscription. Health Care Purposes The participants in this study had mixed sentiments regarding using technology for health care purposes during the pandemic. Some participants deemed the use of remote visits (video or teleconferencing) helpful. One participant expressed, FaceTime, I had two of those with a cardiologist PA (physician assistant), and then I had one with my own personal physician, and those, you know, were quite helpful. Id never done anything like that before (100319). Others stated that remote visits facilitate the accessibility of health care. I think its more convenient, you know, I dont have to worry about having somebody to take me and, you know, bring me back... (020218). Additionally, it made participants feel that someone cared about their health care needs. I at least felt like somebody was listening to any concerns I had rather than having to call and bother the doctor, you know. Cause sometimes you think, well, itll get better, but when they call you, you think, well, I can mention this, actually it gave me a sense that I am being heard. I also knew my doctor was keeping an eye on me and cared about how I was doing. (160919) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 57 It also provided ease of mind since participants were able to reach their health care providers easily. Well, I can get immediate service. I mean, thats immediate service being able to get questions and answers... and I mean, its just like that, you know, thats what I like about it (231008). One participant mentioned that it could compel compliance with exercise. I think a video conference will encourage me to do the exercises (160919). Others resisted and objected to their use, believed that remote visits do not allow healthcare providers to see nuances such as mental stress. I dont like them. I understand the reasoning, why knowing the limited services available, but I dont think you get that one-on-one with your patient. And I think you miss all the cues that are happening around.you dont see the mental stress of a patient. (100619) Some strongly voiced their opposition to video conferences, going so far as declaring it to be worthless. I dont see much good in it at all to tell you the truth... I think its a waste of time and money for people... Get rid of the telehealth stuff, ditch that and just be yourself, just treat them like human beings. You know, we all need somebody. Take an extra five minutes just to chat. (100713) Personal Use Besides health care services access, participants also used internet technology for other life necessities and as a coping mechanism. Some participants expressed interest in and welcomed the use of technology in general. I dont mind the video part of it because I like electronics and everything... Because I had so many other electronic things before this all hit, RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 58 that it, some of it fascinate me to be truthful about that... (050820). The use of social media helped participants reach out to friends alleviating boredom and loneliness. Thank goodness for social media. I can still talk to them (friends), keep up with them that way... dont get to hug them like I used to... and I dont get to see them as often as I used to, but I can communicate with them. (100619) Others used digital devices to keep in touch with family members. Im set up with one of the Echo Shows (Amazon smart audio-video system), and I have a son in Alaska, and most of the time we video talk. And, and so Ive gotten used to that (050820). Some participants did their shopping using the internet to comply with the stay-at-home mandate and mitigation protocols. ... we have been shopping by phone, TV, and then just typing. Yeah, computer... So, weve gone to Krogers Instacart, and they do our shopping and bring it to us (100619). As noted previously, one participant used the internet for a hobby. I do genealogy, so I work on my computer on genealogy, and I talk to the kids on there and I like to go back and read history, and stuff like that on the computer. I like to research people and research things. And that has been mainly my entertainment because I cant get out of the house, and nobody comes by. (231008) Financial Limitations The stay-at-home mandate and mitigation protocols promoted the use of technology to facilitate health care access and delivery (telehealth). However, some participants cited financial limitations as the main barrier to participating in telehealth. Why most people... dont have them, its the expense of them (130419). Also, the costs of internet subscriptions are prohibitive to some participants, and they do not want to use it for anything else, including accessing health RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 59 care services through telehealth. I refuse to use my computer for doc appointment, communication, etc. I pay for the internet for my pleasure not the medical field (231008). Participants Recommendations to Help Improve Access and Delivery of Health Care Services for CDOA in the Next Pandemic When asked for recommendations on how healthcare could be better or best delivered to persons like themselves during the pandemic, the participants provided suggestions covering politics, freedom of choice, finance, transportation, technology, local community program, healthcare professionals, and home health care. Comments regarding politics were related to openness, transparency, and honesty. I much prefer that those in the know, to the best of their abilities, keep politics out of it, keep personal gain out of it, try and get to the bottom of whats going on, figure it out, and then tell us in the meantime, do what you can to keep us from being scared to death, you know, do what you can Number one, be honest and dont say anything, dont go out there and presume this, or assume that, wait till you have the facts. I know thats difficult to come by because things change. (100319) The consensus was that doctors should be leading the dissemination of information and guidance and not the politicians. I think it would be best if the people could have confidence in where our information for this illness would have come from... in my opinion, it comes directly from politicians instead of doctors (050820). The cost of digital devices such as smartphones, tablets, or computers and internet connections also prevented some participants from participating in telehealth. Therefore, the participants recommended financial assistance for digital devices used for accessing health care services. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 60 I dont know... how much it would cost, but it may be an insurance thing. It may be something that if you qualify through insurance, Medicare, or something for the older adults to have a (digital) device, like for example... the home buttons... for emergencies... lifeline units. So, most everybody gets those, and Ive got one. (130419) Some advocated for the establishment of a free transportation program in their local community. Transportation, transportation, mainly, you know, to get these people, to their appointments people need more access to appointments, doctors, you know, and stuff like that. Cause Im sure there are people out there that are not getting their health needs I think that if there was like the little, clinic down here in town, if there was more of those and more accessible for people like me. (020218) In addition to transportation, participants also made other local community program recommendations such as proactive, targeted campaigns and advertisements for CDOA on COVID-19 information updates (mortality and spread of infection rate, the emergence of new variants, vaccination availability, and changes mitigation mandates) and building town clinic. I still, since that time, havent seen much emphasis on my age groups and me being more likely to have serious health problems or death from the disease itself. So, Ive seen less campaign to get seniors involved. I dont know the level of seniors that have done it. Theres been no news releases. I dont know if its good. I dont know if its bad would be nice to be able to inform the public to kind of relate that. And the state knows all of these demographics It would be nice to know that because we dont know were the more likely group aside from frontline workers to die or have serious health conditions from it, then where do we stand? Where do we stand in the mix? I wouldnt want to die RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 61 from it, nor will I want to give it to somebody else. So, it would be to be able to communicate those metrics. (180503) Related to telehealth (technology), participants also suggested incorporating vital signs during videoconferences (remote video visits). I think that the video conference... is very good. I think it should include vital signs since we have the technology. Now, if we can just get it out to people (160919). Furthermore, the participants endorsed an older adult-friendly educational and training program in using digital devices to access health care services. I think you have to work with your clients, help them understand what telehealth is, what to expect, um, what to have ready when youd go through a conference like that, um, be prepared, um, and help have them (100619). Participants advised healthcare providers to be active listeners. Listen to what the persons telling you, I mean the patient, listen (050820). Also, to proactively reach out to patients. I think probably just, maybe going through files and saying who are my patients that might have trouble and might not come to me because of problems and just having maybe the nurses or receptionist just check in and see how are your people and staying on top of being proactive rather than reactive on your end. (130108) Participants suggested that physicians return to making house calls during pandemics. One thing I had heard about that had made me excited that I heard before COVID, but Ive never really seen any results from it. It was about how the doctors were going to start making, uh, house calls again especially ill senior citizens who are in the rural areas. And theres been times when, you know, you feel like youre too sick to go, especially if you cant drive yourself. (160919) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 62 The participants who voiced disfavor for the use of remote visits advocated keeping face-to-face appointments. I want to see my doctor. I want to see my primary care physician than a specialist because he is primary, and hes the one thats going to pick up on, hopefully things before they become a huge problem. And so, I really think its important that those appointments be face to face. (130108) A common sentiment expressed by the participants is related to the value of home health care in meeting their health care needs during the pandemic. ... getting the healthcare workers when you need them sometimes is really hard, and they need to set up something for people like that... the nurse comes out and rehab, something like that to take care of the disabled and the elderly. (231008) Lastly, the participants general advice, to ensure that the health care needs of CDOA like them are addressed and met, was for older adults to be informed, cooperative, and follow the rules. I think going through this epidemic, all of us have learned what needs to be done and how we need to follow the directions and the rules and cooperate with each other. And I think were learning to do that. Its getting easier for people because its becoming part of our life now. So, I think the next time it happens, schools are going to be ready. Hospitals are going to be ready. People are going to be ready. Its not going to be such a shock. Its not going to be, oh, you cant go here, and you cant do this. (100619) Discussion The COVID-19 pandemic abruptly and significantly disrupted the lives of everyone in the world. Compared to the global influenza pandemic, the mortality rate of COVID-19 is higher in the older adults population with medical comorbidities (Petersen et al., 2020). This fact that RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 63 confronted older adults during the 2020 pandemic created stress that affected their mental, emotional, behavioral, physical, and medical conditions (Whitehead & Torossian, 2021). It is reasonable to infer that the combination of multiple pre-existing comorbidities and age-related debilities (physical and cognitive), most older adults who live in rural communities that already face health care challenges, would have more significant difficulties meeting their health care needs during the Covid-19 pandemic (Skoufalos et al., 2017; Tkatch et al., 2017; Yamada et al., 2015). The purpose of this study was to understand the lived experiences of rural CDOA with multiple chronic diseases during the COVID-19 pandemic focusing on meeting their health care needs. Qualitative phenomenology was the research process chosen to understand better participants perceptions of their shared lived experiences during the COVID-19 pandemic. Using Colaizzis phenomenological method for data analysis, this study suggested that the rural CDOA participants considered the impact on mitigation protocol, lifestyle, health and wellbeing, access to health care services, and the use of technology as the main factors that affected their ability to meet their health care needs during the pandemic. A deleterious pattern emerged related to how the stay-at-home and mitigation protocols affected the participants health through deeper dissection of their shared accounts. The feelings of isolation brought about by the mandated safety measures were believed to have caused anxiety and depression, precipitated decreased motivation in physical activity engagement, adversely affected immunology, and exacerbated existing medical conditions. Despite the fear and anxiety drawn from the uncertainty related to the COVID-19 pandemic, the participants in this study were highly compliant in following the recommended safety measures. This characterization reflected the results from Kim and Crimmins' (2020) RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 64 study, which suggested that older adults are more likely to follow safety measures than their younger counterparts. Ironically, this character trait of compliance, particularly related to the stay-at-home mandate and mitigation protocols during the pandemic, contributed to the feeling of isolation, loneliness, and depression. In older adults, emotional and mental stability largely depends on their social connectivity (De Pue et al., 2021). The involuntary disconnection from routine social connections of older adults brought on by the CDCs safety measures mandates resulted in the isolation causing depression. The participants perceived and experienced adverse emotional and mental conditions from social dissociation correlate well with the findings of Santini et al. (2020). These adverse emotional and mental effects of the stay-at-home mandate and mitigation protocols eventually resulted in motivational decline (behavioral) to participate in physical activities. In older adults, especially those with chronic conditions, the absence of physical exertion not only affects the musculoskeletal system but also dramatically diminishes the strength of the immune response (Damiot et al., 2020). Older adults are stereotyped as a vulnerable group of society (Turk & Mcdermott, 2020). Given this, it would be easy to be convinced that their chances of surviving a pandemic are far less in rural communities because of deficient medical and technological infrastructures, insufficient social support systems, and shortage of healthcare providers (Henning-Smith, 2020; Morrow-Howell et al., 2020; Naja & Hamadeh, 2020). However, the shared lived experiences of participants of this study implied that even with the complex challenges that the COVID-19 imposed, in general, they were all able to meet their health care needs. The participants accounts indicated that in addition to their adaptation to COVID-19 challenges, other crucial support systems influenced the ability to meet their health care needs. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 65 These support systems include social connections (family, friends, group affiliation, club memberships), local community programs, and the healthcare system. A common theme that emerged from these support systems based on the participants accounts is the role of technology. Participants shared lived experiences for this study revealed that technology was used for social connections, entertainment, hobbies, and source of information. Recognizing that these support systems are vital to the successful management of rural CDOA health and wellbeing, particularly in times of health crisis such as a pandemic, improving their strength and stability is therefore imperative. Such undertakings should focus on what Chen et al. (2021) described as social, community, and health care system resiliency. Support Systems Social Connections The narrative of participants experiences suggested that it was not only the deeds of driving them to appointments, picking up their prescriptions, helping with home maintenance, and running errands from family members, friends, group constituents, and club organizations that helped with their health and wellbeing but more importantly, it was the social connection. During this pandemic, participants perceived the mandated safety measures caused a cascade of adverse impacts on their emotional, psychological, behavioral, and medical conditions. To alleviate the feelings of isolation, abandonment, and loneliness that lead to depression, anxiety, and disincentive to engage in physical activities, programs that advocate social connections are vital for rural CDOA. A web-based social support group is an example of an action plan under this type of community program (Smith et al., 2020). Older adults can either or both be a member and a mentor within this program. This sort of program encourages older adults to reach out and connect with their peers who are in the same predicament of isolation and loneliness. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 66 Local Community Programs The participants alluded to these types of programs with their recommendations. Specifically, the participants suggested reliable and affordable public transportation; regular, factual public service announcements (PSA) specific to age and the social group delivered by experts (not politicians); and financial assistance and technical support for using technology to access health care services. Transportation. Rural communities in the U.S. faced transportation challenges even before the COVID-19 pandemic (Henning-Smith et al., 2017), and participants in this study described a similar predicament. Some participants shared not being able to rely consistently on family members and friends for transportation due to work, illness, and other life-related issues during the pandemic. The perceptions of participants of this study suggested that the local government and private organizations need to come up with solutions to the transportation problem to help older adult residents make their health care appointments. Reliable and Non-Political Source of Information. Although none of the questions asked during this studys interview were related to politics, some participants voluntarily shared their perceptions of how well or how inadequate the nations response to the COVID-19 pandemic was due to political leadership. Some participants also voiced differing views on experts in the health care department of the government, and this point of view supports the current hyper-partisan state of affairs in the U.S. (Gadarian et al., 2021). The widespread misinformation through social media and TV news outlets has been a factual occurrence permeating everyones lives continuously every day pre-pandemic, which increased during COVID-19 (Soto-Perez-de-Celis, 2020). Also, it is posited that older adults are likely to share misinformation with their friends and family to strengthen common political beliefs RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 67 (Roozenbeek et al., 2020). Since participants in this study shared their use of social media to connect with friends and family, it is reasonable to assume that they were exposed to misinformation disseminated on the internet related to COVID-19. Given the complex nature of human psychology, behavior, and belief system, the task of educating people without the perception of bias would be a tremendous undertaking. However, as suggested by the participants lived experiences in this study, reliable information is crucial in health care management in times of a pandemic. A non-partisan community-based program run by known health care experts providing evidence-based information would help improve rural CDOA health care literacy and combat misinformation. Such trustworthy information can be spread in the community through PSA (TV, radio, internet, newspaper). Technology. Another vital piece of information that emerged from the shared lived experiences of participants in this study was that issues related to technology use are no longer due to fear (Lee et al., 2019). In fact, all participants welcomed the use of technology for a variety of purposes. Some participants described using social media to connect with friends and family, and others streamed music and videos for entertainment. They took advantage of technologys convenience during the pandemic, such as online shopping. It appears that older adults are no longer intimidated by technology that participants stated using it for research as a hobby. None of the participants mentioned connectivity problems, which suggests that, at least for these rural communities, the needed digital communication infrastructures are in place. The participants openness to the use of technology in this study supports the suggestions that most older adults embrace its ubiquitous use for health care access (LeRouge et al., 2014). The use of technology is an essential tool, especially for older adults, to maintain medical, mental, and emotional health during a pandemic. Technologies such as telehealth monitoring RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 68 tablets, wearable and implanted digital devices for monitoring (vital signs, blood glucose level), and delivering medication doses (insulin pump) are beneficial and acceptable to most older adults (Charness et al., 2016). The use of remote or virtual visits has increased across geographic demographics in older adults during the COVID-19 pandemic (Chu et al., 2021). Although this study elicited varied perspectives towards remote visits, most participants availed of its use to meet their health care needs. Therefore, it is worth pursuing and improving upon since preliminary studies suggest it can be an effective modality in health care services during the COVID-19 pandemic (Doraiswamy et al., 2021). Using tablets (iPad Air and Samsung Galaxy) and an App, Andrews et al. (2019) suggested that digital technologies can effectively improve and maintain the mental health and wellbeing of older adults. The participants in this study used digital devices (smartphones, computers, tablets, and smart TVs) for entertainment (streaming audio and video content), social media (Facebook), and a hobby (genealogy) as an effective diversion to combat loneliness and depression. The primary barrier mentioned related to the use of technology is the financial limitation affording the devices and internet subscriptions. For this reason, the participants recommended the establishment of a financial assistance program to help them acquire the necessary digital devices and web connections to participate in telehealth services. Also, training programs for telehealth use that are sensitive to the learning characteristics of older adults should be developed. This process will help attract more interest from older adults in using technology for health care access (Andrews et al., 2019). RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 69 Health Care System As discussed previously, most rural CDOA faces more significant health care management barriers because of pre-existing exacerbating factors in addition to the mitigation mandates during the COVID-19 pandemic. Absent a perseverative character, help from social circles (family members, friends, group, clubs), and the use of technology, this studys participants shared lived experiences suggested that health care system access during the pandemic would have been almost unattainable. Participants perceived home health care services, physician house calls, establishing town clinics, and proactive delivery of services from healthcare providers are programs that could help ensure their health care needs are met. Home Health Care Service. Participants responses to questions related to their health care management revealed their appreciation of the value of home health care services, particularly during the pandemic. Some participants even viewed the visitations from home health care practitioners as a source of social connection. Nevertheless, some participants expressed frustrating viewpoints related to replacing in-person visits with remote visits and delayed services. On April 30, 2020, the Center for Medicare and Medicaid Services issued an emergency policy that waived the standard homebound status criteria (Bekelman et al., 2020). It provided an opportunity for physicians to become more proactive in prescribing home health care interventions, including nursing, physical therapy, occupational therapy, speech therapy, and medical social worker services as appropriate to their Medicare beneficiary patients. However, a significant drop in home health care services was experienced during the pandemic, especially during the early period of 2020 (Jones & Bowles, 2020; Sama et al., 2021). There were several reasons for such dramatic reduction, including (Jones & Bowles, 2020): RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 70 the recent introduction of the use of Patient-Driven Grouping Models (PDGM) in the reimbursement system insufficient supply of personal protective equipment (PPE) and COVID-19 testing paraphernalia decreased referrals due to fear of acquisition and spreading of COVID-19 infection, especially during rises in transmission rate and the emergence of new variance non-reimbursement of telehealth services Before the pandemic, home health care agencies (HHCA) struggled to adapt to the newly enforced reimbursement system. At the behest of the Bipartisan Budget Act of 2018, the Center for Medicare and Medicaid Services (CMS) made changes in determining the reimbursement for home health services, and on January 1, 2020, PDGM became effective (CMS, 2020). The episode of care, which was 60 days, was reduced to 30 days and the number of rehabilitation (PT, OT, ST) visits no longer determines the amount of reimbursement (CMS, 2020). For HHCA, since rehabilitation disciplines were the driving services for reimbursement, the introduction of PDGM meant a significant revenue reduction while adjusting to its rule (Ankuda et al., 2020). HHCA, which failed to adjust, inevitably stopped operations. The consequence is limited HHC agency availability during the COVID-19 pandemic. Early in the COVID-19 pandemic, health care providers, including HHCA, experienced a severe shortage of PPE and testing tools (Cohen & Rodgers, 2020; McMahon et al., 2020). Also, the U.S. experienced COVID-19 infection resurgence, and the world was exposed to new variances from mid- 2020 to the early part of 2021 (Abdool Karim & de Oliveira, 2021; Monod et al., 2021). The shortage of PPE and testing kits, the resurgence of infections, and the emergence of new variances of the COVID-19, promoted fear in the health care sphere of RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 71 influence, including patients and health care providers alike, which resulted in refusals and cancellations of home health care services (Jones & Bowles, 2020). The combination of widespread fear and compliance with the mitigation mandate incited and motivated the use of telehealth (Doraiswamy et al., 2020). However, since HHC agencies are already struggling with significant reductions in revenue, adding a service that does not qualify for payment is nonviable (Jones & Bowles, 2020). Home health care was viewed as a valuable and essential support system by the participants in this study to meet their health care needs during the pandemic. However, this pandemic showed that some barriers prevent older adults, including rural CDOA, from receiving home health care services. Efforts should be made in earnest to address the problems previously enumerated to ensure that rural CDOA will have uninterrupted access to home health care services in the next pandemic. Study Limitations This study presents at least two limitations. First, there is no consensus on what defines a rural community (Hawley et al., 2016). The definition used for the rural community in this study is narrow and can only be applied to similar populations. More remote and smaller rural communities would logically have more challenges related to local government funding, available health care workers, and public and private health care and technology infrastructure. Second, the participants are entirely composed of non-Hispanic Caucasians. Since racial health disparities exist (Laurencin & McClinton, 2020), the results of this study cannot be generalized to more diverse rural CDOA minorities. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 72 Implications for Future Research Studies including this one suggested that the safety measures recommended by health care authorities can exacerbate older adults medical, mental, behavioral, emotional, and physical conditions, as well as causing it to spiral into a vicious cycle (Lebrasseur et al., 2021; Santini et al., 2020; Whitehead & Torossian, 2020). It would be reasonable and beneficial to pursue research studies about intervention programs that can effectively prevent the health and wellbeing of older adults from declining during a pandemic. Inactivity, which is one of the negative consequences of the COVID-19 pandemic, has detrimental effects on older adults physical and physiological systems (Damiot et al., 2021). One crucial source of beneficial exercises and functional activities for older adults is physical therapy provided by home health care services. A research study designed to understand the perceptions of rural CDOA on the effects of home health care physical therapy interventions on their overall health and wellbeing during the pandemic would be a worthwhile project. Although participants of this study had mixed feelings about remote visits, particularly related to home health physical therapy, it is worth exploring how to improve acceptance of virtual physical therapy visits among older adults. Pre-pandemic and pandemic studies have suggested that older adults use of technology has steadily increased (Charness et al., 2016; Chu et al., 2021; Doraiswamy et al., 2021; Lee et al., 2019; Morrow-Howell et al., 2020; Vaportzis et al., 2017). It is reasonable to anticipate that if more studies demonstrate simple and effective use of remote visits for physical therapy as an adjunct to in-person sessions, all older adults will embrace its use. A follow-up study could be designed to ascertain the safety and effectiveness of specific physical therapy programs for remote visits. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 73 Another area for future research is how rural CDOA minorities with multiple chronic medical diseases meet their health care needs during the COVID-19 pandemic. A study suggested that a large number of essential workers who were ordered to continue working are from the minority group of the population (Dorn et al., 2020). McCormack et al. (2020) reported that families of these essential workers have at least one member of 65 years old and older. It would be beneficial to find out how the COVID-19 pandemic affected the health and wellbeing of rural CDOA minority care recipients under the stay-at-home mandate and mitigation protocols compared to the participants of this study. Conclusion The shared lived experiences of rural CDOA participants in this study suggest that despite their vulnerabilities, they were adaptable and maintained a positive outlook on life in the face of a pandemic. In addition to tough personal characteristics, their resiliency also depended on the integrity and efficiency of support systems coming from local social structures (family, friends, groups, church, and clubs), community resources (public transportation, grocery and restaurant delivery services, meals-on-wheels), and health care programs (home health care). 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(2015). Bridging the digital divide in older adults: A study from an initiative to inform older adults about new technologies. Clinical Interventions in Aging, 193. https://doi.org/10.2147/CIA.S72399 Yamada, T., Chen, C.-C., Murata, C., Hirai, H., Ojima, T., Kondo, K., & Iii, J. (2015). Access Disparity and Health Inequality of the Elderly: Unmet Needs and Delayed Healthcare. International Journal of Environmental Research and Public Health, 12(2), 17451772. https://doi.org/10.3390/ijerph120201745 Yen, P. H., & Leasure, A. R. (2019). Use and effectiveness of the teach-back method in patient education and health outcomes. Federal Practitioner, 36(6), 284289. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6590951/ Zamanian, M., & Heydari, P. (2012). Readability of texts: State of the art. Theory and Practice in Language Studies, 2(1), 42-53. https://doi.org/10.4304/tpls.2.1.43-53 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 91 Table 1 Participant Characteristics Participan t ID Gender Age English Proficiency Cognitive and Psychological Competency Rural Community Dweller 71 Number of Medical conditions 4 130108 Female Yes Yes Yes 180503 Male 65 3 Yes Yes Yes 050820 Female 81 5 Yes Yes Yes 130419 Male 72 3 Yes Yes Yes 020218 Female 74 5 Yes Yes Yes 100619 Female 67 3 Yes Yes Yes 100319 Female 82 6 Yes Yes Yes 100713 Female 80 4 Yes Yes Yes 160919 Female 72 11 Yes Yes Yes 231008 Female 77 4 Yes Yes Yes RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 92 Table 2 Codebook Example Participant Quotations ID 231008 My motivation to be physically active has really been affected that I dont want to do nothing. I just want to lay around all the time and sleep, and I have to make myself get up and do stuff. Initial Broad Descriptions Languished. 050820 Missed family gatherings. Experienced loneliness. Became depressed. Feelings of being isolated from friends. Fear of missing out. 100619 020218 160919 I have a very large family and we got together once a month, all of us at our, my house. And theyd hardly be room to walk through the people and it abruptly stopped with this (COVID19 pandemic) its one of the most horrible experiences in my 81 years the depression of not being able to see your friends and to get out, um, puts a big wall between how do you pick yourself up, um, when you want to go and you can't get off, it's like the door is locked and I have to stay in here and everybody else is outside having a good time. Before I, I did it on my own. I went to the grocery store, like any other person went shopping, but when COVID come around, I stopped. I didn't go anywhere. I stayed at home. My family did my grocery shopping. I used to eat out a lot I like, um, amusement parks. I love roller coasters and I got my boyfriend to go to Kings Island with me. We even bought a year pass, our biggest thing we wanted to do before COVID hit and we didn't get to then, and now we're, we're waiting till we can, is going zip lining. So, I want to go zip lining COVID-19 really put a damper on that. Initial Theme Became passive and unmotivated during the pandemic. Changes in shopping habits. Recreational activities affected. Sub-Theme Physical Activities Socialization, Family Changes in lifestyle Before and During the COVID-19 Pandemic Friends Shopping Habits Recreation RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 93 Table 3 Codebook: Final Themes Initial Theme Changes in lifestyle Before and During the COVID-19 Pandemic Participant Quotations Initial Broad ID Descriptions 231008 My motivation to be physically active has really been Languished. affected that I dont want to do nothing. I just want to lay around all the time and sleep, and I have to make myself Became passive and unmotivated during get up and do stuff. the pandemic. 050820 I have a very large family and we got together once a Missed family month, all of us at our, my house. And theyd hardly be gatherings. room to walk through the people and it abruptly stopped Experienced with this (COVID-19 pandemic) its one of the most loneliness. horrible experiences in my 81 years Became depressed. 100619 the depression of not being able to see your friends Feelings of being and to get out, um, puts a big wall between how do you isolated from pick yourself up, um, when you want to go and you can't friends. Fear of missing out. get off, it's like the door is locked and I have to stay in here and everybody else is outside having a good time. 020218 Before I, I did it on my own. I went to the grocery store, Changes in shopping like any other person went shopping, but when COVID habits. come around, I stopped. I didn't go anywhere. I stayed at home. My family did my grocery shopping. 160919 I used to eat out a lot I like, um, amusement parks. Recreational I love roller coasters and I got my boyfriend to go to activities affected. Kings Island with me. We even bought a year pass, our biggest thing we wanted to do before COVID hit and we didn't get to then, and now we're, we're waiting till we can, is going zip lining. So, I want to go zip lining COVID-19 really put a damper on that. Sub-Theme Physical Activities Final Theme Socialization, Family Friends Shopping Habits Recreation Lifestyle Changes RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 94 Figure 1 Colaizzis Seven Steps Coding Process Phase 2 Phase 3 Phase 4 Phase 5 Coders Repeated Readings of Transcripts Codebook: Drawing out specific phrases, sentences statements, expressions, clauses, and sentences. Initial Broad Themes: Extracted phrases from phase two will be assigned broad descriptions that provide distinctive categories and characteristics. Narrowing initial broad themes into all-embracing final themes Final Themes: All embracing comprehensive descriptions Phase 6 Narrative Descriptions Phase 7 Second Member-Checking Repeat 1-3 for each participants transcript Phase 1 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Figure 2 Colaizzis Descriptive Phenomenological Analysis Method 95 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Figure 3 Example Perceived Theme Relationships Mitig a tio n Ma nd a te s a nd Pro to co ls Life sty le Cha ng e s: De cre a se d Phy sica l Activitie s Health and Wellbeing: Exacerbation of Chronic Medical Conditions Ne ce ssita te s Acce ss to He a lth Ca re Se rvice s Use o f Te chno lo g y Me e ting He a lth Ca re Ne e d s 96 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 97 Appendix A IRB Approval Human 800/232-8634 x5774 Sease Room 201L Indianapolis, IN 46227 Research Protections Program (HRPP) 1400 East Hanna Avenue http://irb.uindy.eduhr pp@uindy.edu 1 (317) 781-5774 March 10, 2021 NOTIFICATION OF EXEMPTION DETERMINATION Study Number: 01385 Study Title: Meeting Health Care Needs: The Perspective of Rural CommunityDwelling Older Adults with Multiple Chronic Diseases During the COVID-19 Pandemic Exemption Determination Date: March 10, 2021 Principal Investigator: Laura Santurri, PhD, MPH Director, Health Sciences Program The above-referenced protocol has been reviewed in accordance with the US Department of Health & Human Services (DHHS), Office for Human Research Protections (OHRP) regulations, specifically 45 CFR 46.104. Based on these criteria, this study is exempt from IRB Review. This exemption is valid unless changes in the project may impact the eligibility for exemption under the federal regulations. If you need to make any changes to the study, please contact the HRPP office hrpp@uindy.edu for guidance on whether additional review is required. Please submit all personnel changes through IRBManager as a Modification of Approved Protocol. Upon completion of your study, please submit a closure report through the IRBManager system. Yvonne Wakeford, Ph.D. Director: Human Research Protections Program (HRRP) HRPP Jan 2019 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 98 Appendix B Letter of Cooperation Romeo Acosta, PT, MHS Reid Home Health 2220 Chester Boulevard Richmond, IN 47374 (765) 960-0680 romeo_acosta@chihealthathome.com January 4, 2021 Gina Lucas, RN, BSN, COS-C, CRNI Associate Corporate Responsibility Officer Common Spirit Health at Home 1700 Edison Drive Milford, OH 45150 (513) 576-0262 Gina.lucas@chihealthathome.com Re: Research Study Permission Request Letter of Cooperation Dear Ms. Lucas, My name is Romeo Acosta. I am a full-time physical therapist at Reid Home Health in Richmond, a branch of Common Spirit Health at Home in Indiana. I am pursuing a doctoral degree in Health Science and in the process of initiating my research dissertation project. I am writing to you to ask for permission to conduct human subjects research involving our branch in Richmond, Indiana. This endeavor entails recruiting potential participants ages 65 and older from the patient roster of Reid Home Health. My research study will follow the University of Indianapolis Human Research Protection Program Institutional Review Board (HRPPIRB) guidelines. In addition, patients privacy and the confidentiality of medical records will be protected in accordance with the Health Information Portability and Accountability Act. In summary, my research project is a qualitative phenomenological study that aims to understand the lived experiences of rural community-dwelling older adults with multiple chronic diseases during the COVID-19 pandemic. Its primary focus is to determine how this population experienced health care during this time. The study involves an audio-recorded interview that will be transcribed and analyzed to extract deeper meaning and interpretations of the participants lived experiences. The results are anticipated to inform healthcare providers, educators, and policy makers of the necessary changes in policies and planning to ensure that rural community-dwelling adults healthcare needs will be met in the next health care crisis. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 99 I am conducting this research on my own without support or funding from any source. The University of Indianapolis HRPPIRB requires that any institutions involved in a research study, directly or indirectly, should be aware of the research being conducted within their jurisdiction. A letter of cooperation provides acknowledgment of cognizance and permission of the research study. I have attached the University of Indianapoliss letter of cooperation with my email. You may use the template per your choice and transfer it to the companys letterhead. Copies of my research project proposal and recruitment flyer are also included in the attachments. I am looking forward to your response. Please feel free to contact me by email or phone at any time for any queries. I thank you for your precious time and kind consideration. Sincerely, Romeo Acosta, PT, MHS RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Appendix C Approval of Letter of Cooperation 100 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 101 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Appendix D Recruitment Flyer 102 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 103 Appendix E Information Sheet Department of Interprofessional Health and Aging Studies, University of Indianapolis KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS You are being asked to participate in a research study about understanding rural communitydwelling older adults lived experiences during the COVID-19 pandemic related to health care needs and wellbeing. Your decision to participate is completely voluntary. This research project will include an audio-recorded interview that will take one to two hours of your time. About four weeks later, you will be asked to review, based on your preference, a print on paper or an emailed copy of the interview. Approximately four months after that, you will be asked to provide your feedback on the researchers interpretations of the information you provided. There are no anticipated risks or discomforts with this study. You have the right to choose to discontinue your participation at any time, and it will not be held against you if you do so. While there are no direct benefits to you for participation, it is anticipated that the study results may help health care professionals, educators, and policymakers address the needs of rural community-dwelling older adults like you during situations like the COVID-19 pandemic. CONSENT TO PARTICIPATE IN RESEARCH STUDY Meeting Health Care Needs: The Perspective of Rural Community-Dwelling Older Adults with Multiple Chronic Diseases During the COVID-19 Pandemic Study Principal Investigator (PI): Laura Santurri, PhD, MPH, CPH Uindy Email: santurril@uindy.edu Uindy Telephone: (800) 232-8634 x2409 Laura Santurri, PhD, MPH, CPH, and Romeo Acosta, PT, MHS in the Department of Interprofessional Health & Aging Studies at the University of Indianapolis (Uindy) are conducting a research study. You were selected as a possible participant in this study because you are 65 years or older, have two or more chronic conditions, live in a rural community, and communicates in the English language. Your participation in this research study is voluntary. Why is this study being done? This research study is about understanding rural community-dwelling older adults lived experiences during the COVID-19 pandemic related to meeting their health care needs. The results are anticipated to help healthcare professionals (doctors, nurses, insurance companies, therapists, and other medical professions), educators, and policymakers address the needs of rural community-dwelling older adults like you during situations similar to the COVID-19 pandemic. 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: RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 104 Participate in an audio-recorded interview that will take one to two hours of your time. The location of the interview will be of your choice, such as the comfort of your home. A virtual or phone interview will also be an option. Within a month of the interview, review a typed up or an email copy (based on your preference) of the audio recorded interview. At that time, you will have the opportunity to modify or add to your previous statements. Approximately four months after the interview, review and provide feedback on the researchers interpretations of the information you provided. How long will I be in the research study? Your participation in the research study will last approximately four months. This includes the initial interview, providing feedback on the typed up or email copy of the interview about one month after that, and then providing feedback on the researchers interpretations of the information you provided about four months after the interview. Are there any potential risks or discomforts that I can expect from this study? There are no anticipated risks or discomforts with this study. Are there any potential benefits if I participate? You will not directly benefit from your participation in this research study. However, it is anticipated that the results of the study may help health care professionals, educators, and policymakers address the needs of rural community-dwelling older adults like you during situations like the COVID-19 pandemic. Will I be paid for participating? As a token of appreciation for sharing your time in this research study, you will receive a $25 gift card. 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. All study materials will be stored on a password-protected computer and database. Typed up copies of the interview and the researchers interpretations of the information you provide will not include any identifying information. Only the research study member who works for Reid Home Health will review your medical record. The medical record review will determine whether or not you will meet the inclusion RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 105 criteria for this research study. This research studys requirements are related to age, residents location, having two or more medical conditions, and ability to understand and speak English. None of the information during the medical review will be kept or reported. Will the data from my study be used in the future for other studies? Data from this study may be used for future research or shared with other researchers for studies without additional informed consent. However, none of your identifying information will be shared. 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. Withdrawal from the study will not affect the health care services provided to you by Reid Home Health Agency. 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: Laura Santurri, PhD, MPH, CPH (317) 788-2409 or santurril@uindy.edu Romeo Acosta, PT, MHS (765) 969-5325 or acostar@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. Follow up studies We may contact you again to request your participation in a follow up study. As always, your participation will be voluntary, and we will ask for your explicit consent to participate in any of the follow up studies. How do I indicate my informed consent to participate in this study? You do not need to sign this or any other document to indicate your consent. Completion of the interview shows that you are willing to participate. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 106 Appendix F Interview Guide I, Romeo Acosta, am a healthcare professional in the field of physical therapy. I want to extend my gratitude and appreciation for your willingness to participate in this interview. This interview is part of my doctoral research project in the Health Science program at the University of Indianapolis. The purpose of this research study is to understand the experiences of older people with multiple chronic illnesses during the COVID-19 pandemic. The results of this study will help those who plan and provide healthcare to prepare for ways to ensure that the healthcare needs of older adults like you will be met in the next healthcare crisis. During the interview, I will be asking questions about your social, recreational, physical fitness, entertainment, and health care management experiences during the COVID-19 pandemic. The interview may take approximately thirty to ninety minutes. Your stated responses to all the questions will be kept confidential. You have the right to decline to answer any particular questions and discontinue the interview at any time. I want to remind you that participation in this study is not connected to your health care and will not affect the health services you are receiving from Reid Home Health Care. Before we proceed, do you have any concerns and questions? As mentioned previously, I will be audio recording the interview to capture your responses. Are you okay with me starting the audio recording now? Questions RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 107 To begin the interview, please tell me about your life before and during the COVID-19 pandemic. 1. Describe your shopping habits, such as grocery, department store, and accessory shopping, before and during the COVID-19 pandemic. 2. How was your social life before and during the COVID-19 pandemic? 3. What were the sources of your entertainment and recreational activities before and during the COVID-19 pandemic? 4. Describe your physical fitness activities before and during the COVID-19 pandemic. 5. How did you meet your health care needs, such as doctor's appointments, medical tests, prescribed medications, and other medical necessities, if any (physical therapy, vision, podiatry, dental, etc.), before and during the COVID-19 pandemic? Now, I will ask you about the impact of the COVID 19 pandemic on your life. 6. What part of your life has had the most significant change directly caused by the COVID19 pandemic? a. In what ways has this part of your life changed? 7. What part or parts of your life were not affected by the COVID-19 pandemic? The next questions will be related to the effects of the CDC's stay-at-home order and mitigation protocol, including physical distancing (keeping six feet apart), avoid gatherings that do not allow for physical distancing, and mask-wearing during the pandemic. 8. How do you believe that the stay-at-home order and mitigation protocol affected your attitude and outlook in life? 9. How did the stay-at-home order and mitigation protocol make you feel? a. Explain why you felt that way. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 108 10. Based on your answer in question four, how did the stay-at-home order and mitigation protocol make you feel about its effect on your physical fitness habits, such as exercising in the gym, walking alone or with friends, etc.? 11. To what extent do you believe that the effect of the stay-at-home order and mitigation protocol on your attitude and outlook in life and the effect of the stay-at-home order and mitigation protocol in your motivation in health and fitness activities are interconnected? Now, I will be focusing on experiences concerning your health care needs while the COVID-19 pandemic is happening. 12. Can you talk about changes that occurred in meeting your health care needs during the pandemic, including medical appointments, getting your prescriptions, home health services, communicating health-related concerns, and medical emergencies (if any)? 13. If there were no changes that occurred in meeting your health care needs during the pandemic, can you describe how you were able to maintain your ability to keep up with your health care needs under the mitigation mandate? 14. What changes in trying to meet your health care needs challenged you the most? a. How have these changes most challenging to you? b. How did these changes affect your ability to manage your health issues? 15. If you had any specific health issue (medical diagnosis) affected the most by the COVID19 pandemic, explain why you believe so? 16. How have you adjusted to and dealt with the changes and challenges you have faced in meeting your health care needs? RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 109 17. If any of the changes made meeting and managing your health care needs easier, what are these changes, and in what way did these changes helped meeting your health care needs easier? If you experienced telehealth during the COVID-19 pandemic, I have some specific questions about it. 18. Describe your experience if you participated in video conferencing and or phone calls to access and receive health care services? 19. If you did not participate in video conferencing and or phone calls, how did you access and receive health care services? 20. If you participated in using telehealth for monitoring your vital signs, describe your experience in taking your vital signs, entering them on a digital device, and sending the information to your healthcare provider? 21. If you did not use digital technology to monitor your vital signs, how did you communicate your vital signs issues to your healthcare provider? 22. If there is anything you feel could make the use of telehealth easier and more effective in managing your health care needs, what would it be, and why do you believe so? I want to conclude our interview with your comments, recommendations, and suggestions. 23. Based on what you experienced living through the COVID-19 pandemic, what recommendations or suggestions would you have related to how health care services could be better or best delivered to rural, older people like you? 24. What advice would you have on how healthcare professionals could better help people like you manage their health care in a pandemic? 25. What other suggestions do you want to share? RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 110 Before I end this interview, I am happy to answer any questions you may have. If you have no questions, I would like to remind you that I will be sending you copies of our interview transcripts for your review. You should expect the transcripts in two weeks. I will also send you copies of my interpretations of your shared lived experiences in approximately three months. You are welcome to make changes you feel are necessary to describe your lived experiences accurately. Thank you so much for your precious time, kind consideration, and thoughtful responses. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 111 Appendix G First Member-Checking Letter of Instructions Dear Mrs./Mr., First, I would like to thank you again for participating in my study. As we discussed, a copy of our interview transcript is included with this letter. Review the transcript, and feel free to make changes, corrections, and additional comments to the transcript itself. Please write your changes, revisions, and other suggestions exactly where you want them to be in the transcript. I will be calling you in a week or two to ask if you have made changes to the transcript. If you answered yes, then I will schedule a time when I can pick up the transcript. If you did not make any changes, then we do not have to do anything else. I anticipate that in about three to four months, I will be able to complete the analysis of the shared experiences of all my participants and come up with the results. I will send you a copy of the analysis results of all the participants' interviews, and you are welcome to give your comments, recommendations, and suggestions. Please, do not hesitate to call me at (765) 969-5325 or email me at acostar@uindy.edu for any questions you may have. Sincerely Yours, Romeo Acosta, PT, MHS 3517 Waterford Street, Richmond, IN 47374 (765) 969-5325 RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 112 Appendix H Narrative Description of Final Themes Based on their shared lived experiences through interviews, the community-dwelling older adults (CDOA) participants in this study were presented with new challenges from the COVID-19 pandemic related to meeting their health care needs. However, the participants showed resiliency, resourcefulness, perseverance, adaptation, and reliance on faith to overcome the barriers imposed by the COVID-19 pandemic. The CDOA in this study considered the impact of mitigation protocol on lifestyle, health and wellbeing, access to health care services, and the influence of technology to be the most critical factors that affect the ability to meet their health care needs. The participants' disclosed lived experiences associated with addressing their health care needs during the COVID-19 pandemic showed interconnections of these factors, i.e., how the influence of technology affects access to health care services, lifestyle, and health and wellbeing; how the mitigation protocols promote the use of technology to access health care services, affected lifestyle, and health and wellbeing of the participants. The participants were asked for recommendations to help healthcare providers, politicians, and educators address and meet their health care needs effectively in the next pandemic. Impact of the Mitigation Mandate and Protocol in Lifestyle, Health, and Wellbeing In general, the participants' shared lived experiences suggested that the stay-at-home mandate, social distancing, and mask-wearing caused significant changes in their lifestyle during the pandemic. Routine activities such as walking the dog, walking with friends at the park, attending church, club activities, working out in the gym, family gatherings, shopping, and eating out with RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 113 friends and family are all put on hold. The participants' reflections suggested that these changes adversely impacted their medical, mental, and physical condition. Participants pointed out that isolation made them feel abandoned and alone, which led to depression. Also, some participants viewed social distancing, stay-at-home, and mask-wearing infringed on their freedom to do usual activities. Participants expressed that mitigation protocols made it difficult to access health care services and increased their mental stress. Some participants believed mask-wearing caused or aggravated respiratory illnesses. However, others feel it was a necessary practice to prevent the spread of COVID-19 infection. The shutdown of specific medical departments such as elective surgery forced some of the participants to have delays in joint replacements and spine surgeries. Such unanticipated holdback resulted in an extended period of living with pain. However, all participants expressed an optimistic outlook of their health situation and life overall. Coping mechanisms were employed to overcome medical, psychological, and physical deterioration. Participants turned to humor and laughter from any source (TV shows, newspapers, radio, conversations, streaming video shows on the phone) to combat loneliness. Some wrote greeting cards and letters of encouragement to friends and church members to feel useful. Others noted increasing their telephone use to reach out to friends and family members to fill out the time. Some participants walked in their neighborhood and interacted with neighbors to stay physically active and emotionally and mentally engaged but were also observant of the mitigation protocols. House and yard work kept the other participants busy. Access to Health Care Services The participants' shared lived experiences elicited common concerns and needs related to accessing health care services during the pandemic. These issues are about health care needs, RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 114 transportation, appointments, pharmacology, interventions, treatment, and support system. Taken as a whole, the accounts of the participants showed interdependence of these issues. Technology and the mitigation protocol also impacted CDOA's ability to access health care services. Transportation Participants cited transportation as one of the main concerns related to accessing health care during the pandemic because of the impact of the mitigation protocol. Participants who could not drive even before the pandemic and those who otherwise could drive but due to age-related issues, chronic medical problems, and recent surgical interventions expressed worry due to the uncertainty of not finding anyone to drive them to health-related appointments. However, despite the mitigation protocol, all participants were able to access transportation to appointments, pharmacies, grocery stores, and department stores like before the pandemic. Participants stated that public transportation continued to operate. Also, private services, friends, and family members were available to help them with transportation. All of the support systems mentioned were able to provide services by strictly following the mitigation protocol. Appointments All participants reported experiencing some degree of difficulty and reservation with keeping and attending medical appointments. Most of them made necessary adjustments and arrangements to keep up with medical appointments during the pandemic, but some hold off in seeking medical consultation. The main reason for declining medical consultation is fear of being admitted to the hospital or nursing home where chances of acquiring COVID-19 infection are more significant since it is full of people infected by COVID-19. The promotion of technology (remote visit), the mitigation protocols, and transportation capability (mentioned above) are three factors that influenced the participants' motivation and RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 115 ability to attend appointments. Some participants deemed the use of remote visits (video or teleconferencing) helpful, convenient, appropriate, allowing for immediate access to care, and safer than in-person appointments. Some expressed frustration but complied with the mitigation mandate and protocols for in-person appointments (mask-wearing, waiting in the car, social distancing). Others resisted and objected to their use, believed that remote visits do not allow healthcare providers to see nuances such as mental stress, and strongly voiced their preference for face-to-face appointments. One participant experienced punctuality instead of the usual long waiting time from the scheduled appointments before the pandemic. Others had trouble scheduling appointments, including with specialized healthcare providers, during the "lockdown." Pharmacology In general, the participants experienced no disruption in receiving prescribed medications either by store pick-up or through the mail. Similar to transportation and appointments, most of the participants in this study depended on support systems available to secure needed medicines. One participant cited that one of the values of receiving nursing services at home (home health care), especially during the COVID-19 pandemic, was their ability to facilitate prescription medication management. Through their assessment each visit, home health nurses could ascertain the need for prescription adjustments or new medications. The nurses communicate these recommendations to the attending physician, which helped eliminate the possibility of the participants being scheduled for an in-person consultation, reducing the exposure to COVID-19. Others expressed frustration that some medications could not be acquired through the mail system. Interventions and Treatment RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 116 The interventions and treatment mentioned by the participants in this study were generally related to prescribed medications, declining physical condition (muscular weakness, decreasing endurance, joint stiffness, joint pain, muscular aches, standing balance deterioration), chronic disease management such as arthritis (knees and back), blood pressure, and gastrointestinal problem. Similar to general medical appointments, everyone experienced varying degrees of difficulty scheduling needed medical interventions and treatments. Most of the participants continued to schedule and kept appointments for interventions and treatments for joint problems, dental, eyes, and medical conditions. Three participants received elective surgeries (two joint replacements and one spine surgery), and all experienced delays in surgical interventions due to the "lockdown" mandate. One of the two joint replacement participants expressed disappointment for being unexpectedly discharged on the same day, while the other experienced delays in needed health-related interventions. The participant with the shoulder problem opted out due to fear of acquiring COVID-19 in the hospital. One of the participants, a veteran, continues to receive treatments at the local and out-of-state veterans administration facilities. The same participant expressed disappointment and frustration from the delay and limited rehabilitation treatment while in the nursing home. Another participant who received in-clinic hemodialysis experienced alteration of the procedure (COVID19 mitigation protocol and not allowed to bring food), but the scheduled treatment continued uninterrupted. All participants voiced appreciation for receiving interventions and treatment for their medical issues and mobility problems related to balance, strength, endurance, and coordination from the home health care program. The participants deemed home health care invaluable during the pandemic because it could prevent health issues from worsening by serving as a bridge between RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 117 the patient and the primary care physician. It lessened the mental stress of calling the physician and being scheduled for an appointment under the mitigation mandate. Also, the routine inperson visitations of the home health care agency's clinicians provided psychosocial support to the participants. The participants remarked not experiencing problems in general with pharmacological interventions, which continued to be received by mail or store pick up. Support System The participants clearly expressed the significance and value of the support system in facilitating access to services to meet their health care needs. The support system received came from family, friends, church members, club members, home health care clinicians, and the local community groups and services. It impacted all the facets of participants' health and wellbeing. Friends and members of the participants' families, church, clubs, and community groups helped with transportation (medical appointments and picking up prescriptions), shopping (groceries, clothing), meals (preparation and deliveries), home maintenance, and financial organization. The home health care services provided immediate intervention and treatment of medical problems, activities of daily living, and mobility issues related to strength, endurance, balance, and coordination. Influence of Technology The stay-at-home mandate and mitigation protocols promoted the use of technology to facilitate health care access and delivery. The CDOA participants in this study have mixed sentiments regarding the use of technology during the pandemic. Some participants believed that technology has a place in health care, but others felt it is a waste of time and money, worthless, silly, and a con. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 118 Positive perspectives in the utilization of technology during the pandemic include convenience (do not have to leave home and be out in public), immediate access to healthcare providers, a sense that someone is listening, digital therapeutics (digital blood glucose level monitoring), a source of coping mechanism (entertainment, hobbies, social networking), meal ordering, prescription refill, and online shopping. Negative views shared are awkwardness (do not have the comfort of face-to-face interactions), loss of valuable non-verbal communication (body language and gestures), expensive, complicated, limited to verbal communication (do not include vital signs and lab work), and cannot substitute for physical therapy interventions and treatment. The shared lived experiences of the participants suggested the utilization of technology was not only for health care access and delivery but also for personal needs such as shopping, meal deliveries, and entertainment. Overall, based on the prevailing opinion of the participants, the challenges to the acceptance of technology as an effective tool for meeting the participants' health care needs depend on affordability, ease of use, and purpose. Participants' Recommendations for Meeting CDOAs Health Care Needs in the Next Pandemic When asked for recommendations on how healthcare could be better or best delivered to their demographics during the pandemic, the participants provided suggestions covering politics, freedom of choice, finances, transportation, technology, local community program, healthcare professionals, and home health care. Comments regarding politics are related to openness, transparency, and honesty. The consensus is that doctors should be leading the dissemination of information and guidance and not the politicians. Some participants emphasized freedom of choice regarding mask-wearing, stay-at-home, social distancing, and vaccination mandate. Preparedness is also stressed. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 119 Collectively, participants concerns and suggestions related to financing (cost), local communitybased health care program, transportation, and technology emphasized the interconnectedness of the four issues. Affordability is one barrier that prohibits participants from getting transportation to medical appointments, picking up prescriptions, and shopping for essentials. The cost of digital devices such as smartphones, tablets, or computers and internet connections also prevents most participants from participating in telehealth. Therefore, the participants recommend financial assistance for transportation and digital devices to access health care services. Some advocated for the establishment of a free transportation program in their local community. In addition to transportation, participants also made other local community program recommendations such as proactive, targeted campaigns and advertisements for CDOA on COVID-19 information updates (mortality and spread of infection rate, the emergence of new variants, vaccination availability, and changes mitigation mandates) and building town clinic. Related to telehealth (technology), participants also suggested incorporating vital signs during videoconferences (remote video visits). Furthermore, the participants endorsed an older adultfriendly educational and training program in using digital devices to access health care services. Participants advised healthcare providers to listen carefully, proactively reach out, and make house calls (physicians). The participants who voiced disfavor for remote visits advocated keeping face-to-face appointments. A common sentiment by the participants is related to the value of home health care in meeting their health care needs during the pandemic. All participants proposed that home health care services should be extended and provided without delay during a pandemic. Lastly, the participants' general advice, to ensure that the health care needs of CDOA like them are addressed and met, is to be informed, cooperative, and follow the rules. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE 120 Appendix I Second Member-Checking Instructions Dear Mr./Mrs. Greetings! This is Romeo Acosta, the physical therapist from Reid Home Health, who asked for your participation in my research project earlier this year. I hope that this letter reaches you in good health and wellbeing. As we have discussed, I am to send you the summary of my study's results for your review. A copy is included with this letter. Please read it carefully at your convenience. You will receive a phone call from me after a few days to ask for your responses. Similar to the transcripts I emailed you a couple of weeks after the interview, you are welcome to make revisions or comments on these documents. If you have remarks or other opinions, please use the "track and change" option in Word Doc for typing your changes next to the section where you want them included. Email back the document when you complete all your revisions. If you do not have any changes, then you do not have to do anything. Please remember that this is just part (last part) of the data analysis process. Once I receive your responses, then I will start writing my research project study manuscript. I aim to have it completed by the middle of November and defend it successfully by December of this year to earn my doctorate in Health Science. I want to take this opportunity to give you once again my deepest gratitude for sharing your precious time. Without your participation, this endeavor will not have been possible. Also, the meaning of your shared lived experiences may help inform healthcare providers, policymakers, and educators to become better prepared in helping rural community-dwelling older adults like you meet their health care needs in the next pandemic. RURAL COMMUNITY-DWELLING OLDER ADULTS PERSPECTIVE Sincerely Yours, Romeo Acosta, PT, MHS 3517 Waterford Street, Richmond, IN 47374 (765) 969-5325 121  ...

... Return to Occupations: The Experiences of Individuals with Brain Injury Using Photo Elicitation Kendra Voth, Claire Allen, Hanah Batchelor, Alison Burt, Alexandria Watkins, and Kelsey Yerem A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Lori Breeden, EdD, OTR, Associate Professor A Research Project Entitled Return to Occupations: The Experiences of Individuals with Brain Injury Using Photo Elicitation Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kendra Voth, Claire Allen, Hanah Batchelor, Ali Burt, Allie Watkins, and Kelsey Yerem Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate DeCleene Huber Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Dec 14, 2020 Date LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 1 Abstract The purpose of this study was to examine the lived experience of individuals with a brain injury as they engage in occupations in their community, including employment, shopping, and attending social events. Brain injuries affect aspects of life including cognition, return to work, social relationships, and other factors foundational to daily activities. This study used a photo elicitation method to examine the experience of returning to community-based occupations for adults who have acquired brain injury. Participants were given a photo assignment containing a theme or concept to explore in photos each week. After completing the assignment, participants selected photos that were the most important to them and discussed the experiences represented in the photos with a member of the research team. Researchers used thematic analysis to identify themes found within the data. Themes were verified with participants through member checking at the start of the second and third interviews. Researchers identified six themes based on developing a new me, and egocentrism. These themes were consistent with previous literature. Occupational therapists can use the experiences described in this study to better understand the process of returning to community based instrumental activities of daily living after a brain injury. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 2 Exploring the Lived Experiences of Individuals with Brain Injuries Using Photo Elicitation Brain injuries affect aspects of life including cognition, return to work, social relationships, and other factors foundational to daily activities. A brain injury (BI) involves damage to the cerebral hemispheres, the cerebellum, or the brainstem (Nichols & Kosciulek, 2014). Brain injuries can be categorized as acquired brain injury (ABI) or present from birth (TBI), which is an injury to the brain caused by external factors such as a force or shock to the because of deficits in cognitive, emotional, and physical functioning (Lorenz, 2010). There is a lack of public understanding of individuals with a brain injury due to the unseen nature of cognitive and psychosocial deficits and the lack of self-awareness people with brain injuries may experience (Ralph & Derbyshire, 2013). Every brain injury is unique; therefore, everyone with a brain injury has a distinctive experience. Brain injuries often affect the frontal region of the cortex, which controls executive function and regulatory behaviors such as inhibition, working memory and problem solving (Martinez and Davalos, 2016, p. 390). The invisibility of the injury, the stigma surrounding it, the lack of public understanding, and an impaired self-awareness can make it difficult for individuals to express their lived experiences. These factors can also make it more challenging for an individual with a brain injury to form and maintain social relationships, return to work, and engage in meaningful occupations. This study aims to examine the perspective of individuals with a brain injury returning to occupations in their community, such as work or school. People with a BI struggle to engage in occupations and consequently, experience a decline in their confidence during social interaction, LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 3 productivity in daily activities, and life satisfaction (Olofossen, Nyman, & Larsson, 2017). An improved understanding of a typical day for an individual with a brain injury could result in better interventions to support their recovery. By using participant action research (PAR), this study will allow people with a brain injury to be a part of the research team and give them the ability to determine the priorities in this study (Zarb, 1992). According to Olofossen, Nyman, & Larsson Lund (2017), people with a brain injury have individual factors that influence how they engage in outside occupations. In order to examine the various factors that influence people with a brain injury, this study will allow people with a brain injury to explain their challenges in returning to community-based occupations through the use of photo elicitation. Their shared experiences will improve the ability of occupational therapists to deliver relevant interventions. Photo elicitation is a powerful research method in which participants share their lived experiences and points of view through use of photographs and narratives during interviews (Lorenz, 2010; Maratos et al., 2016). As a form of participatory research, photo elicitation is based on the assumption that participants are the experts of their experiences and are therefore in the best position to share those experiences (Bugos et al., 2014; Maratos et al., 2016). Through use of photo elicitation, we hope to improve awareness and understanding of the experiences that individuals go through after acquiring a brain injury. The purpose of this study is to examine the lived experience of individuals with a brain injury as they engage in occupations in their community, such as instrumental activities of daily living (IADL) including employment, shopping, and attending social events. This study aims to explore the experiences of people with brain injury returning to community-based occupations. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 4 Literature Review There are several factors that impact life for individuals who have a brain injury. These factors include the impact of stigma, changes in cognition and self-awareness, and social esteem, leading to the individual feeling anxious or depressed (Poritz et al., 2017; Russinova, Mizock, & Bloch, 2018). Affective factors, such as depression, can result in a decline of a 2017). Some individuals with a brain injury may conceal their injury due to concern about negative reactions they might face (Riley & Hagger, 2015). This can lead to worry that others may be able to tell they are concealing something during social interactions (Riley & Hagger, 2015). Withdrawing from social interaction can increase loneliness and depression and lessen the social support the individual receives from engagement (Hagger & Riley, 2017). Seeto (2018) found individuals who had suffered a brain injury felt that their peers did not comprehend how a brain injury affected their lives. In the current research study, we aim to better understand the lived experience of someone with a brain injury. Stigma Stigmatization can come from an individual themselves as well as from others. Perceived stigma involves a person with a condition understanding that others have a negative attitude towards their condition (Poritz et al., 2017). Researchers have found stereotypes about cognition, outcomes, and self and social development regarding individuals who have a brain injury (Fresson et al., 2017). Ralph and Derbyshire (2013) found the public often negatively perceived people who had suffered a brain injury. Stigmatization towards individuals with a brain injury is increased by a lack of public understanding of a brain injury, creating unrealistic expectations of LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 5 these individuals as they attempt to resume engagement in occupations (Ralph & Derbyshire, 2013). -esteem, selfefficacy, empowerment, quality of life, and socia identified ways other people, such as healthcare professionals, can help individuals with a brain importance of client-centered practice following a brain injury. Because individuals often felt as though they lost their past identity following injury, they appreciated their therapists getting to know what their life was like before their injury as well as their life post& Lentin, 2016). Cognition One area of cognition often affected after a BI is executive function (Frazier, 2018). Fraizer (2018) found the level of brain injury severity plays a role in which executive function processes are affected. Individuals with mild brain injuries may have less noticeable deficits, such as trouble maintaining their attention and focus (Fraizer, 2018). Individuals with moderate brain injuries may have more trouble with complex occupations, including medication management or driving. Individuals with severe brain injuries may be unable to function independently (Fraizer, 2018). Researchers found deficits in executive functions are detrimental to functional outcomes, because individuals with these deficits have a difficult time compensating for them (Spitz et al., 2012). Decreased processing speed may affect processes included in executive function, such as inhibition, initiation, and shift (Gioia et al., 2000) and that decreased processing speed was present in adults with a brain injury, as compared to a control group (Dymowski et al., 2015). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 6 Selfaware of their compromised after a brain injury (Geytenbeek et al., 2017; Rigon et al., 2017). Geytenbeek et al. (2017) measured self-awareness among individuals with a brain injury finding decreased selfawareness after one month when compared to discharge, followed by increases in self-awareness three and six months after discharge (Getyenbeek et al., 2017). They suggested initial decreases in self-awareness were brain injury reintegrate into the community, self-awareness increases. As these individuals participate in the community, they may become more aware of their deficits because they begin to face barriers to participation in their common occupations from before the injury (Getyenbeek et al., 2017). Return to Work Returning to work is a critical factor in determining quality of life because it strongly predicts life satisfaction by enhancing self-esteem and allowing the individual to be a productive member of society (Mani et al., 2017). An i injury may be affected by stigma in their community (Fresson et al., 2017). Stergiou-Kita et al. (2017), suggested misperceptions create an opportunity for bias in a community. For example, employers may have a bias about how an individual with a brain injury will perform a job, which can result in an individual with a brain injury experiencing workplace discrimination (StergiouKita et al., 2017). These misperceptions can result in individuals with a brain injury choosing to not disclose their brain injury, creating social barriers in the workplace (Stergiou-Kita et al., LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 7 2017). The public holds many inaccuracies about brain injury recovery, with a majority surveyed expecting those with a brain injury to always have some form of physical impairment as well as cognitive, emotional, and behavioral difficulties (Ralph & Derbyshire, 2013). In addition to stigma generated by the misperceptions of others, factors within the individual can hinder their return to work (Douglas et al., 2016; Mani et al., 2017; Ralph & Derbyshire, 2013). Individuals who have a brain injury report they feel shame and embarrassment about their post brain injury symptoms (Ralph & Derbyshire, 2013). -worth and self-confidence during everyday work tasks, which may stem from their feelings of inferiority to their coworkers (Ralph ability to sustain a job after a brain injury (Mani et al., 2017). However, motivation and physical support from others can also facilitate return to work for an individual with a brain injury (Colantonio, 2016; Moller et al., 2017). Motivation support includes praising the individual with a brain injury for the job they are doing and making them feel that they are a productive member of the team (Moller et al., 2017). Physical support includes accommodations related to deficits after a brain injury (Moller et al., 2017). Social Relationships Social relationships between individuals with a brain injury and their families, peers, and caregivers change significantly following the injury (Stevens et al., 2013). Reasons for changes in social relationships may involve stress on family members, peers, and caregivers, as well as new life values and opinions in individuals with a brain injury. Researchers found social interactions between individuals with a brain injury and others have the potential to be LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 8 rewarding, however, other people must be considerate and understanding of changes due to the brain injury (Nicholas & Kosciulek, 2014). Understanding the impact of a brain injury on the peers and family members of individuals with a brain injury is critical in establishing sincere relationships (Nicholas & Kosciulek, 2014). Researchers conducted a qualitative study to discuss mental health and assess perceptions of relationship bonds between patients who had experienced a brain injury and their caregivers (Stevens et al., 2013). Individuals with a brain injury and their caregivers reported similar viewpoints on family dynamics, except when discussing familial empathy (Stevens et al., 2013). The patients scored the family empathy category lower than their caregivers (Stevens et al., 2013). From these results, researchers concluded engaging in discussion about their family ve the lack of knowledge and information, in order to create more positive relationships between individuals with a brain injury and their family members (Stevens et al., 2013). Photo Elicitation The aim of photo elicitation is to provide a way for individuals to express themselves and share the stories that are most important to them (Ostaszewska, 2018). Research suggests photo elicitation may be appropriate to use with individuals with disabilities because of the flexibility of the approach. Lorenz (2010) conducted a study using photo elicitation with individuals who 13). Povee et al. (2014) used photo elicitation to explore the experiences of individuals living with intellectual disabilities. Povee et al. (2014) suggested photo elicitation may be more accessible to individuals with disabilities due to the focus on visual rather than text-based data. Through LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 9 describing photos of lived experiences, participants can use photo elicitation to share experiences and improve public awareness and understanding. Therefore, photo elicitation can be a powerful way to explore and understand the lived experiences of individuals with brain injury. Methods This qualitative study used photo elicitation, a research method that involves the use of photographs to prompt and guide in-depth interviews, to examine the experience of returning to community based occupations for adults who have experienced acquired brain injury (Bugos et al., 2014). To incorporate photo elicitation into the current study, participants used their phs of their situations, and 210). By asking participants to take their own photos, this method allowed them to be a part of the research process, thus challenging the traditional relationship between researcher and participant (Povee et al., 2014; Ostaszewska, 2018). The Institutional Review Board and the completed informed consent forms indicating they fully understood the risks and benefits associated with their participation. Participants Participants were recruited from brain injury support groups across central Indiana using purposeful sampling. Email and electronic flyer containing contact and study information were sent to the local Brain Injury support network leader, and department of resource facilitation for Indiana. A presentation about the project was given at RHI Neuro Rehabilitation Center that led to the recruitment of four of the five participants. The fifth participant was recruited using LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 10 convenience sampling through a connection with one of the researchers. Participants consisted of four females and one male; ages ranged from 20 to 50 years old. Three out of the five participants held employment. All engaged in community activities. Inclusion criteria for the study required participants be 18 years of age and at a level of independence in their brain injury recovery that allowed them the opportunity to return to work or community activities. Lastly, the participants needed to be able to safely and independently take their own photographs. Exclusion criterion included sev ability to either understand or engage in conversation about their photographs. Setting The initial recruitment of participants took place either via email or in person at a brain injury support group meeting. Participants who provide their contact information and expressed interest in the study received an email or text message to schedule an initial session at a time and location convenient to them. Subsequent individual interview sessions also occurred at locations and times convenient to the individuals. Procedures Photo Elicitation Method Participants were assigned a photo assignment containing a theme or concept to explore through photos each week. Examples of the photo assignments are included in Appendix A. After completing the assignment, participants selected the photos that were the most important to them and discussed the experiences represented in the photos with a member of the research team. Interviews were guided by descriptive style questions (Spradley, 1979) and examples can be found in Appendix B. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 11 Recruitment of Participants Three out of the five participants completed intake documents, including a letter of informed consent, a media release document, safety guidelines for taking photos, and details regarding the overall study on the day they were recruited. They were also presented with their first photo assignment that day and were asked to complete it within two weeks. The other two participants attended an initial session to complete documents and received their first photo assignment following recruitment. Individual Interviews Participants were asked to complete photo assignments that were guided by our research question (Appendix A). Upon completion of their photo assignment or at the two-week mark, participants were contacted by a member of the research team to schedule a time and location for an individual interview. During the interviews, participants shared their photographs with members of the research team who used a laptop to display the photos. Interviews took place using a two-person team. One member conducted the interview while the second member took field notes and assisted with the operation of the recording device. Interviews were audio-recorded to ensure accurate transcription. Recordings and photographs were transferred to a password-protected laptop and transcribed within 48 hours. Member checking occurred at the start of interview two and three. Members of the research team completed a reflexivity journal after each interview. An audit trail maintained to ensure trustworthiness. Data analysis Following transcription, researchers used thematic analysis to identify themes found within the data (Braun & Clarke, 2006). Thematic analysis occurred after each transcription and LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 12 refined as successive interviews were completed. Themes were verified with participants through member checking at the start of the second and third interviews. Results The current research study included five participants, from central Indiana, who had experienced a brain injury. These participants completed three interviews each, with two weeks in-between each interview. Following the completion of the interviews, thematic analysis was to participants: changing identity, feeling stuck, making modifications, moving on, developing a new me, and expressing egocentric characteristics. Changing Identity Participants found several changes impacting life after their brain injury. Changes included mental and physical limitations, leading to changes in roles and interests, which ultimately changed the occupations in which participants found their identities. Many participants described difficulty remembering information and the need to write down details more than they did before their brain injury. Some found it took longer to accomplish their goals than they thought it would before their brain injury. Participants often compared their mental and physical abilities prior to and after their brain injury. One participant described the experience of remembering her physical abilities are different than they were before the injury: As soon as my feet hit the floor, for a second, I forget that I have a disability. And I stand up really fast and try to walk and then as soon as I stand up I realize I can't move my legs like I thought I did (Participant 2, Interview 2, Line 487-491). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 13 Because of physical and mental changes, participants expressed changes in their roles and values. Participants described changes in employment, difficulties obtaining a job, and changes in interests. One participant described the process of retiring due to her brain injury: at all. Um, I probably took that the (Participant 2, Interview 1, Line 283-285). Other participants discussed difficulty completing the requirements needed to obtain the job they were on track for prior to their injury or changes in career interests. One participant hat matters to me? What are my -107). Another participant expressed sadness about the loss of interest in shopping due to difficulty finding clothes that fit right and the loss of her ability to wear the majority of her collection of shoes. This participant expressed her identity through her clothes and shoes and had difficulty expressing that due to physical changes. She described this as she talked about her collection of shoes represented by shoes she used to wear before her injury in Figure 1. Due to mental and physical changes, participants were not able to engage in the things that were meaningful and a part of their identity before their brain injury. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 14 Figure 1 Physical Changes Limit Expression of Identity Multiple participants discussed changes in their personalities and interactions with other people that occurred as a result of their brain injury. Several participants experienced less fear of speaking in front of people or to strangers. Throughout this study, participants expressed changes in the way they viewed themselves and the way they expressed their identity. Being Stuck Whether it was physically or psychosocially, four of the five participants shared experiences related to their brain injuries in which they felt as though they were stuck, lost, unseen, unaware of their deficits, or unable to move forward. Participants frequently emphasized the uniqueness of brain injuries in relation to other injuries, which seemed to make overcoming their injuries even more of a challenge. One participant described this difference as follows: not put the bone grows back (Participant 1, Interview 1, Lines 414-418). Similarly, another participant described her experience of coming to terms with her brain injury through a discussion she had with her mother: LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 15 My mother used to always ask me, uh, tell me what to do to fix it. Cause I just be in my t... There life back (Participant 2, Interview 1, Lines 152-167). Participants also expressed challenges to independence they had before the injury. For example, while d (Participant 2, Interview 1, Lines 97-101). This participant described visiting a museum and having to wait for everyone else to finish viewing each exhibit before she could move on due to her need for physical assistance. She expressed frustration with her decreased independence and feeling as though she was stuck relying on everyone else. Figure 2 Stuck in the Museum At times, individuals in this study found it difficult to understand and navigate changes in cognition. This transition can lead individuals to feel lost or stuck in a place of confusion or uncertainty. One participant described her uncertainty, around her ability to become a nurse after LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 16 -39). This participant took the image in Figure 3 and described to researchers her experience of graduating with a nursing degree, but struggling to pass the NCLEX exam after her BI. Figure 3 Feeling stuck in career path Another participant described a similar struggle he had at his job: but once I met with my okay well um... (Participant 3, Interview 1, Lines 179-181). A third participant described her confusion related to the new challenges she faced: T make sense (Participant 2, Interview 2, Lines 393-397). Participants in the study expressed feelings of being stuck, or unseen, due to a lack of understanding and consideration for individuals with brain injuries or other disabilities. One LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 17 ade bigger but then when I get them bigger it fits on this side but not on this side. Or it fits on this side but not on this side (Participant 2, Interview 2, Lines 312-342). She described the process of trying to shop at a large mall: The only mall I can think of is to go to Castleton mall because Castleton mall has scooters... But all the malls are not like that, they do not have scooters. They do not have mobility devices. They are like, well we have a wheelchair and I am like so who is going to push us? (Participant 2, Interview 3, Lines 664-677). Participants also expressed being perceived and treated differently after acquiring their Interview 1, Lines 67- inte -150). One participant described her feelings of being treated differently in her workplace: expert that they specifically hired for this purpose, they will not want to bother me with something that's complex, so they'll figure it out some other way and then I have to fix it (Participant 4, Interview 3, Lines 24-28). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 18 One participant seemed to face challenges related to him being unaware of deficits that with a brain injury to move past some of the challenges he was facing in his work and personal life. Making Modifications d interviews. Many participants discussed lifestyle changes they encountered following their brain injury. Each of the participants in this study indicated they had to make modifications to complete different tasks effectively due to deficits from their brain injury. Participants faced memory deficits, physical changes and limitations. Throughout the interviews, it became clear that -based tasks was an important part of the recovery process for each participant. Participants often had to make modifications for memory deficits. One participant discussed how she modified her morning routine to include the use of technology and help organize her day: these things like, I gotta do this this and this, and then get this done. I don't know if you're like that but that's how I am. So, for me like, and when I lay there in the morning and I don't get up, that's my brain time. So, brain starts working overtime. All my ideas come at once. I don't know why. So, having the Alexa is like I don't have to do that because it helps me organize my thoughts, organize things that I need to do today (Participant 2, Interview 2, Lines 536-542). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 19 Visual reminders, such as using planners or other visual modifications, was another modification that participants used to address help with their memory deficits. One participant phone, it's ki relate it to time management and getting stuff done. I mean, I'm paying my bills on time, you -40). Another participant made her own modification to help her remember to take her medications before she left for work each day. In Figure 4, the participant shared her box velcroed to the door so that I remember. I cannot walk out the door without them being in -255). Figure 4 Memory Modification All five of the participants described the need to make modifications for physical changes or limitations. They identified dressing and self-care tasks as the most commonly modified tasks. While displaying the image in Figure 5, one participant identified experiencing difficulty with buttoning his shirt cuffs required for professional dress on his job. However, he found a solution LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 20 to save him time in the morning. He stated, "I'm buttoning these before I even put them on, so I t on, ready to go, you know, I'm ready to go" (Participant 3, Interview 1. Lines 40-41). Participants frequently discussed the modifications they were able to make to address changes after BI. Figure 5 Self Care Modifications Moving On Each participant conveyed his or her personal experience of moving forward after brain (Participant 2, Interview 1, Line 222). Individuals expressed the importance of accepting their injury and the need to use this injury as a transition into the next stage of their lives, for , Interview 2, Lines 296-297). Following this acceptance stage, all participants expressed wanting to begin a new phase of life and move forward. However, each voiced the difficulties they experienced moving forward with their friendships. One participant I've moved forward, but nobody else can LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 21 revealed the importance of individuals with a brain injury moving forward toward a new identity and people in their support system allowing the individual to build a new identity. Although the transitioning and moving on phase was not easy, participants conveyed the uniqueness of their experiences. Through the difficult transition period, one participant indicated Lines 13-14; 462-463). One participant expressed the need to complete certain activities their Interview 1, Lines 467-468). This quote conveys the confidence and ownership of their experience. Through this new phase of life, new goals and objectives were created to keep moving icipate in a 5K each year, to the best of her ability. Figure 6 shows her after the 5K one year. This quote suggests how individuals accomplished new challenges, despite the difficulty experienced along the way. Participants demonstrated a sense of pride as they discussed their accomplishments after their brain injuries. One participant discussed personal achievements and independence stating, -216). These quotes convey a sense of pride in accomplishing goals while trying to move on. The image displayed in Figure 7 represents this participant's hard work at rehab and her accomplishment of becoming Patient of the Year. As participants demonstrated their ability to move on, they expressed an understanding of a negative experience in a positive light. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 22 Figure 6 Accomplishing Physical Goals Figure 7 Hard Work Paying Off Some participants described negative experiences during their process of moving on. Most participants discussed past conversations with friends and family pointing toward their inability to complete an activity due to their brain injury. However, one participant projected a to it" (Participant 1, Interview 3, Line 135). Developing New Me All of the participants discussed the process of coming to terms with the new changes their brain injury brought into their lives. Participants expressed the process of developing a new LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 23 ways. I knew that and I could see how I was different and this whole situation has sort of moved it to another iteration and now I'm like 3.0. And I'm trying to figure out who that is and what that -135). In coming to terms with their brain injury, many of the participants learned more about brain injuries and used their experiences to mentor others with brain injuries. The majority of the participants in the present study took part in a brain injury coping skills course and support groups that contributed to their learning. In addition to these outside resources, the participants researched the effects of brain injuries on their own and stated: all the stats that it was I um, just reading about it reading about what people go that does not sound likely. Everybody has this problem, but nobody says that (Participant 2, Interview 3, Lines 584-592). Many of the participants developed a new role as a mentor to help others with similar disabilities. While displaying the welcome mat she made in Figure 8, one participant discussed their newfound passion of helping those with disabilities by stating: take a lot of pride in it and I'm so, so interested in learning as much as I can and helping people, you know (Participant 4, Interview 2, Lines 280-281). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 24 Figure 8 Finding New Passions While displaying the image in Figure 9 and discussing her ability to have a positive attitude toward life. another participant stated: I can tell people that are having struggles that I am trying to help and get them ready for the day and do all the stuff that fulfills their lives and stuff and okay yeah I was in a coma (Participant 1, Interview 2, 206-210). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 25 Figure 9 Helping Others Move On This is consistent with another participant who created a program to aid individuals with disabilities travel. She stated: I try to get as much knowledge as I can cause obviously according to everyone else my so I just still try to learn as much as I can to help as many people as I can (Participant 2, Interview 2, Lines 375-377). By accepting their disabilities, many of the participants developed a new role by becoming a mentor for others with disabilities. Developing this new role in their lives seemed to give participants a sense of meaning and purpose in their lives post brain injury. Egocentric Throughout the interviews, some participants demonstrated difficulties in seeing things from a different perspective than their own. At times the participants demonstrated a lack of ability to take responsibility, instead putting the blame for situations completely on other people. Participants also expressed feeling more aggression and forthrightness. Changes in personality LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 26 after brain injury resulted in some participants being more easily angered than they might have been before the injury. While displaying the image of him and his son in Figure 10, one My sons he brings it up that um I get angry and frustrated too quickly to with a situation I Interview 2, Lines 163-166). Figure 10 Change in Family Relationships Although he believed his behavior did not change because of his brain injury, his family disagreed. This participant demonstrated a lack of insight into changes after his brain injury, sharing: Um. I mean Patrick [son] noticing it and addressing it and then my mom also saying well yeah you do tend to get more frustrated with things more easily than you used to. Well I LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 27 -181). sed aggression after his brain injury; however he was unable to see it himself. Even though people he trusted identified a change, he expressed trouble believing them because it did not match his view of himself. Several participants expressed difficulties interacting with other people after their brain injury. Some participants demonstrated a tendency to become frustrated when other people did not intuitively understand their experiences. Two participants described having difficulty with co-workers or bosses. One participant shared: My current boss is just being ridiculous about it and I had an issue with her, verbally with her a week or two ago and, just pissed off and let her know about it and um so I know it all comes down on me, I mean I gotta make shit happen but for some reason it's not that easy (Participant 3, Interview 2, Lines 57-61). Participant 4 also shared the difficulty she had with her boss and co-workers. Her office is located in the basement of a building with limited access. She uses an elevator to access her office, but if it is out of order, the stairs are her only option. The power went out one day and this participant described wanting to test her co-workers to see if they would come check on her without her reminding them, even though she could walk up the stairs. She took the image in thinking you know how long do I wait before I call the fire department and then how mad would they be when I didn stated: -425). She LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 28 It was a situation that made me think negatively about being disabled and turning that o do, it pushing the issue in a way. (Participant 4, Interview 2, Lines 412-414). Figure 11 Testing Others Both participants demonstrated difficulties in seeing their role from an outsider's perspective in the situations and their egocentric responses may not have contributed positively to their workplace. Overall, participants described common experiences related to recognizing the impact their new deficits had on occupational identity, feeling limited by those changes, learning to adapt to changes, moving forward with their lives, and developing new roles. While each participant had different experiences, these common themes can help others understand the experience of having a brain injury and returning to community-based occupations. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 29 Discussion The themes identified in this study will be examined in light of the existing literature to ose described in other studies. Changing Identity The theme of changing identity found in the current study is consistent with existing literature. The participants in the current study described noticing changes in their physical, mental, emotional, and social abilities. These changes impacted their roles and occupations, impacting their identity. They often compared their current selves to the version of themselves prior to the brain injury. Several other researchers have found disruptions in physical, cognitive, and emotional abilities after a brain injury, individuals feel a sense of disconnect from their former identity and experience occupational loss and limitations in occupational choices (Bryson-Campbell et al., 2013). Many participants in the current study discussed changes in abilities. Some participants told stories which indicate changes in cognitive abilities such as memory or processing time such I find myself a lot more easily distracted um and because of that I can't recall necessarily what I was doing or what I was supposed to be doing. And I'm worried that it's going to affect like driving -177). Others told stories indicating changes in their abilities to follow social cues or to physically complete tasks. Heller et al. (2006) also found individuals with brain injury had changes in physical, cognitive, and emotional abilities. Because of those changes, individuals had fewer options to define themselves and fewer opportunities to engage in meaningful occupations (Heller et al., 2006). Myles (2004) found participants felt separated from their former identities and when asked why they felt that way, LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 30 cited physical, mental, emotional, and social changes. Identities are closely tied to the occupations people can perform (Hoogerdijk, et al., 2011). In addition to lingering symptoms, participants in the current study discussed the ways they felt unlike their original selves after the injury. Such as Participant 4 saying: My chosen career was libraries...if it were possible for a library shelf to be in the line fire I would have jumped in front of it to take that to take that bullet, um and I'm not sure I would do that anymore. I don't know that I care that much (Interview 1, Lines 239-245). Heller et al, (2006) found individuals with a brain injury felt a disconnect between their current selves and their past selves. Similarly, other researchers have found individuals have to accept they are not who they used to be before their brain injury (Fraas & Calvert, 2009). Myles (2004) found individuals were not able to complete tasks in the same way they did before their injury or responded to situations in ways they did not expect. The changes in abilities and in responses contributes to the loss of identity often experienced after a brain injury (Myles, 2004). Many participants in this study described times they were surprised by their reactions to certain situations, indicating changes in their identity after the injury. Several participants discussed challenges in their role as a worker. Similarly, other researchers have found lingering changes, such as impacts on working ability for long term as described by participants in this study (Libeson et al., 2018). Even for those returning to work after a brain injury, loss of identity can influence the work experience. Individuals may feel like they are not who their employers or other people want them to be (Nochi, 1998). Individuals need in order to get their job done (Nochi, 1998). Participant 4 expressed this as she talked about her challenges establishing But I just didn't even bother LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 31 responding because I thought about it a lot. If I'm gonna have an accommodation maybe an agenda for the meeting. And I'm like that's just standard business practice that doesn't actually -94). Frequently, participants compared their current selves to their past or previously imagined future selves. Hoogerdijk et al. (2011) found individuals experienced a struggle to gain a new identity after their brain injury. Individuals from this study also compared their current selves to their previous selves and wanted to be able to change their current selves (Hoogerdijk et al., 2011). Participants in the current study described trying to achieve the goals they had set before their injury or trying to get back to the previous version of themselves. Because of their changing identity, participants in the current study had to develop a new version of themselves, incorporate changes due to the brain injury, and decide how to cope with them. Researchers have found similar themes of individuals struggling to find a new identity and to fit the new version of themselves into their lives (Fraas & Calvert, 2009). Muenchberger et al. (2008) described a process of identity transition after brain injury, where individuals experienced both contraction and expansion of identity. Contraction of identity included comparison to self before injury and the desire to return to that version, leading to a sense of loss (Muenchberger et al., 20008). Expansion of identity included developing a new version of self after injury (Muenchberger et al., 2008). Researchers described a balance in which individuals go back and forth between contraction and expansion of identity. Participants in the current study demonstrated this balance as they talked about comparing their life to what it was before their injury and also about the new aspects of themselves, they developed after their injury. None of the participants were solidly on one side or the other as far as identity transition. Throughout the LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 32 interviews, participants expressed that the transition between acknowledging their changing identity and developing a new version of themselves was not an easy one. Being Stuck Participants in the current study commonly described being physically stuck due to physical impairments or barriers, lack of accessibility, and lack of consideration from others. Researchers examined the impact of perceived environmental barriers on community reintegration among individuals with brain injuries and found them to be significantly associated with decreased reintegration (Pappadis et al., 2012). Whiteneck et al. (2004) found that individuals with brain injuries who reported greater physical barriers also reported lower levels of participation and satisfaction. This research suggests that environmental barriers and lack of accessibility can lead to decreased participation in occupations among individuals with brain injuries. Similar to the participants in the current study who expressed feeling stuck due to relying on others, researchers who studied the loss of driving after brain injury found that participants experienced a range of physical and psychological needs related to being stuck (Liddle et al., 2012). They discovered that participants experienced sadness, grief, and anger related to the loss of independence and the need to rely on other people (Liddle et al., 2012). They also found driving represented a multitude of things to participants, including independence, transportation, convenience, normality, and contributions to life roles and personal identities (Liddle et al., 2012). This research suggests that the loss of independence, represented by the loss of driving, In addition, individuals with brain injuries have commonly expressed being emotionally stuck due to a variety of reasons. Lorenz (2010) examined the lived experiences of individuals LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 33 with brain injuries through the use of photovoice and photo elicitation. Just as a participant in the current study mentioned how her brain injury is unlike a broken bone in that it cannot be fixed, a The for individuals with BI to communicate what type of support they need. Individuals with brain injuries also report perceived stigma and being treated differently than other individuals without brain injuries. Similar to the participants in the current study who described feeling different, misunderstood, stigmatized, and viewed as intellectually incapable, previous research has found that other individuals with brain injuries have reported feeling devalued, dismissed, patronized, and perceived by others as stupid (Wright et al., 2016). As a result, participant 198). One participant in the current study described being stuck in the basement of her workplace during a power outage with no co-workers checking on or helping her. Ralph and Derbyshire (2013) also found individuals with brain injuries experience coworkers doubting their needs for adaptations or support due to the injury being unseen. This can lead individuals with brain injuries to feel stuck and lack support from others due to a lack of understanding. One participant in the current study appeared to be cognitively stuck, as he was unable to recognize his deficits and therefore struggled in his work and personal life. Previous research suggests that awareness of deficits is crucial for successfully adapting to life after a brain injury (Flashman & McAllister, 2002). Participants in a study on the impact of brain injury reported LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 34 their cognitive deficits negatively impacted their ability to communicate with others and return to work (Materne et al., 2017). However, because they were aware of their deficits, the participants were able to overcome many of their challenges through use of modifications and adaptations communication deficits plays an important role in their reintegration to the workplace. Social cue misinterpretation and inappropriate comments were some of the specific social communication problems that caused issues in the workplace (Douglas et al., 2016). The participant in the current study struggled with awareness of deficits and thus was not able to effectively use modifications or adaptations to overcome them. Participants who were more aware of their deficits were able to make modifications in order to return to meaningful occupations. Making Modifications The participants in the present study indicated they had to create modifications to complete occupational tasks effectively due to deficits in cognitive or physical abilities. These deficits demonstrate a need for occupational therapy for the individual to resume a functional and productive role (Maitra & Buchman, 2018). In the present study, memory deficits resulted in the most modifications. It is important to understand the barriers individuals with a brain injury encounter. Coping and adapting played a major role in the recovery process of each participant. Adams and Dahdah (2016) looked at methods of coping and adaptation by persons with TBI in response to their needs associated with loss of productivity, loss of income, medical costs, toll on emotional well-being, and expense on family and society. Many of the participants in the present study endured similar stressors. Improved health and well-being of the person with a brain injury and their caregiver was dependent on how successfully he or she could cope with the brain injury LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 35 effects (Adams & Dahdah, 2016). Occupational therapy can be helpful in developing successful strategies to overcome barriers (Maitra & Buchman, 2018). A participant shared how she gave herself a visual reminder by taping her medication box right by her door so she would not forget to take her medications before she left every day. Participants in the current study discussed improved health and well-being for themselves when they had successfully adapted through the use of modifications. The goal of Adams and Dahdah (2016) was to establish the needs of persons with TBI and the needs of their caregivers and to explore the coping and adaptation methods utilized by these individuals. Occupational therapy can be crucial in facilitating a relationship between functional ability social participation for the individual with TBI and the caregiver (Maitra & Buchman, 2018). The findings from Adams and Dahdah (2016) study showed individuals with TBI reported problems with memory loss, fatigue, anger, and personality changes similar to the participants involved in the present study. Many of the participants created coping strategies on their own to adapt to their BI. Other researchers have also found participants used handheld devices and planners to accommodate for memory deficits (Adams & Dahdah, 2016). Each participant in the present study created individualized modifications to overcome their barriers. One participant explained how she used an Alexa device to help organize her mornings, while another participant shared that she uses alarms on her phone as reminders throughout her day. Researchers found there were several different ways participants recovered, coped, and adapted to life with a TBI, but each was a valuable process (Fadyl et al, 2019). Each participant in the present study shared the individualized adaptations they created. Adaptation is thought to be important in the recovery process (Fadyl et al, 2019). Several individuals with a TBI struggle with functioning day to day following their injury (Fadyl et al., 2019). Participants in the current LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 36 study also identified struggling with day to day functioning. The Fadyl et al. (2019) study discussed participants spending significant amounts of time to adapt and find new ways to accomplish everyday tasks, similar to the participants in the present study. Fadyl et al. (2019) sought to determine factors that helped or hindered recovery and adaptation following a TBI. Researchers found there are various ways of recovering, coping, and adapting to the effects from a TBI (Fadyl et al., 2019). Making modifications was important for participants in the present study as they changed following their brain injury and learned their new lifestyle. Adaptations Creating new goals was another adaptation participants made in the current study. The Brands et al. (2015) study outlined the need of participants to find a balance between their current function and adjust to long-term limitations. This was challenging for the participants in the present study and several of them had difficulty meeting goals in the early stages following their brain injury. Similarly, Brands et al. (2015) found multiple participants were unable to meet important life goals in their first year after their brain injury. This led to participants realizing they needed to modify their life goals and one year after discharge, participants had improved in their ability to meet their goals. Participants in the current study discussed how they had to modify their goals following their brain injury. Modifications made by numerous participants were changes to career goals, life goals, and adaptations to their timelines. Moving On Participants in the current study discussed the process of moving on after their brain injury. In a study conducted by White, Brinkman, Kresge, & Couture (2018), participants expressed feeling like they were not the same person after their brain injury. In addition, they discussed wanting to share their experience with others, focusing on their strengths, and overall LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 37 perceiving their brain injury as being positive. Some of the current participants expressed wanting to help others who had experienced the same injury. In addition, participants wanted to educate the public on what changes occur after a brain injury and why they might act a certain way. Multiple participants expressed the challenge of their friends and family not understanding why activities were taking longer to complete, or why they might have to schedule their days to stay on track. Despite setbacks with cognition and physicality, participants communicated that they were using their brain injury as fuel to take their lives to the next stage (Graff et al., 2018). New values and appreciation for others grew as they moved into a new beginning (Graff et al., 2018). One participant was very determined to go back to school to receive a degree in Nursing. She used her brain injury experience as a step forward to accomplishing her goals. Another participant expressed the importance of doing things that made herself happy. She found a new appreciation for friendships and stopped working in a negative environment to focus on engaging in activities that made her happy. Family and other support systems influenced how these individuals were challenged and moved forward with their rehabilitation (Graff et al., 2018). Most of the participants explained the challenge of rehabilitation through physical, occupational, and speech therapy. They discussed the difficulties of different exercises and the frustrations they experienced while communicating with different therapists. The White et al., (2018) study detailed how themes of possibility, purpose, and participation arose after participants interacted with other individuals who had undergone similar experiences. Individuals communicated moving forward with finding new hobbies and learning new skills, such as musical instruments (White et al., 2018). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 38 Interactions with others gave them a sense of purpose and drive to move forward by helping other individuals overcome their challenges and educate the community (White et al., 2018). Individuals expressed being more socially engaged with others as well as finding parttime jobs to help improve their mental health (White et al., 2018). One participant began working as a teacher, once he realized he could not continue his old job. He moved on and chose another career path. However, he expressed that he was still in contact with previous coworkers and friends. Although this helped his mental health, another individual was not able to continue working. She discussed the need to retire and find other hobbies to occupy her time. All the current participants were able to express and communicate ways they moved on, despite the challenges of work, relationships, and the negative impacts of experiencing a brain injury. Developing New Me Participants in the current study developed new roles in their lives as a result of coming to terms with the impacts of their brain injuries. It is evident that in order for an individual to cope with their brain injury, they must accept the brain injury and its effects. Participants in the study indicated in order to adapt to the changes post-injury, acceptance was a critical step. Accepting reality, rather than dwelling on their lives prior to their injury, was a defining moment progressive self-acceptance was commonly described. Similar to the participants in our study, individuals felt that describing their losses was a part of the process of accepting their new self (Klinger, 2011). In congruence with the current study, not only was acceptance a crucial step in the coping process, but it was also necessary for individuals to make occupational adaptations that facilitated engagement in meaningful occupations (Klinger, 2011). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 39 While the majority of our participants had accepted the changes their brain injury brought forth, one participant did not attribute any difficulties to his brain injury. Based on the difficulties he has experienced and his resistance to correlate daily difficulties with his brain injury, it seems that he has not yet fully accepted the outcome of his brain injury. In a study completed by Hyatt and colleagues (2015), individuals not willing to accept the effects of their brain injury were also described. Some participants refused to accept the new changes after their injury and strived to return to their prior level of functioning (Hyatt et al., 2015). These participants found the changes after their BI were unacceptable and did not want to modify aspects of their lives after BI. The participant in the current study described experiences that represented this concept. He viewed his life as though nothing had changed due to his brain injury and pressed on as if he had never had a brain injury. Another essential step, identified by the participants, was the development of new roles in their lives. For the majority of the participants in our study, new roles were acquired by educating themselves about brain injuries and becoming a mentor for others who have a similar experience. This is comparable to other individuals who had already accepted their brain injury and had learned to advocate for themselves (Eriksson et al., 2019). Advocating for themselves provided individuals a meaningful role and a sense of pride in their lives (Eriksson et al., 2019). Based on the data, it is evident that advocating and mentoring others is one way to cultivate new meaning in life. Participants in the current study acted as mentors to help others learn to cope with their new disability. The role of a mentor gave new meaning to their lives that they may not have had if not for their brain injury. Similarly, mentoring others has therapeutic benefits through encouraging hope in a new life after a brain injury (White et al., 2018). Educating others is LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 40 valuable for both the individual and the community, as it can help community members better understand how to interact with those with a disability (White et al., 2018). Participants expressed they viewed some impacts of their brain injury in a positive light. They have been able to embrace changes and reassure others that there is hope in their recovery. Egocentric Egocentric personality is defined as self-centered, without respect to the feelings of Apperly, 2012). Three of five participants in the current study described themselves as being more assertive after their brain injury. One of the participants had a traumatic brain injury to the frontal lobe. The frontal lobe is responsible for executive function; therefore, personality change could be affected due to location of injury (Jaffee et al., 2007). There is limited research indicating that people with brain injury can develop an egocentric personality. However, there is research indicating that people diagnosed with PTSD have disruptions of emotional and cognitive processes due to the fight or flight response (Williamson et al., 2015). People with PTSD have a harder time regulating emotions due to the potential threat that is not modified by the higher cortical processes; therefore, voluntary behaviors, anger, or social engagement/isolation can be unpredictable (Williamson et al., 2015). Some participants in the current study indicated they had been diagnosed with PTSD. One participant had an incident at work which brought out her fight or flight response: It was, yeah kind of an ambush. I didn't agree with what the person suggested, and I offered an alternative solution and then because it was an alternative and not his idea he was fighting back and then that made me react in the way that I do now. And I was pushing back to and then it was just like pushing back and forth and then everybody kind LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 41 of jumped on that side so then I was backed into a corner. And then I've learned that fight or flight, I'm a fight (Participant 4, Interview 2, Line 38-50). The three participants talked about issues that caused them to have an outburst when angered by their bosses or a family member. Bivona et al. (2015) found individuals with TBI may have empathy, perspective taking, and theory of mind deficits, even with adequate levels of self-awareness and their emotional states (Bivona et al., 2015). Deficits in empathy can negatively impact the quality of life for those around the individual with a brain injury (Bivona et al., 2015). This is consistent with results of the current study. Participants in the current study struggled to see situations from another perspective or to understand how their family or coworkers might feel in the situation. Participant 4 talked about her struggles with her employers and coworkers both in meetings and in one instance when the power to the building went out. In these situations, nd emotional states and difficulty understanding their perspective. Overall, themes found in the current study were consistent with previous research. Themes in the current study created an overarching progression from identifying and struggling with changes to accepting and adapting to changes and creating a new life with meaning. Previous researchers have found similar results for each theme, confirming while each person experiences a brain injury differently, there are some common experiences and feelings. Conclusion The purpose of the current study was to contribute to the knowledge about the lived experiences of individuals with brain injuries as they engage in meaningful occupations and community-based activities. Through the use of photo elicitation, researchers gained insight into LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 42 the challenges participants faced as they navigated life after a brain injury. The themes, including changing identity, being stuck, making modifications, moving on, and developing a new me, describe a process that participants went through in which they learned to struggle with, adapt to, accept, and find meaning in their new way of life after brain injury. Following their brain injuries, participants experienced changes in their roles, routines, and identities that led many to feel stuck in regard to returning to work and other community-based activities. For many participants, these changes led them to search for ways to continue moving forward in their new lives; however, some participants, due to personality changes and self-awareness challenges, found personal conflicts to be a barrier. Limitations The current study experienced the following limitations. The first limitation is the potential for participant bias. Over successive interviews researchers developed great affection for participants. This was made apparent by reflexivity journal entries and discussed during analysis. A limitation of our study was the impact of the COVID-19 pandemic. Before our final interview with one participant, stay at home orders were put into place, therefore the final interview was cancelled as the impact of this experience would certainly complicate the discussions. Additionally, the researchers had hoped to bring participants together for a focus group where they could share their photos and experiences. This experience was cancelled as well as future recruiting until a later date. These changes reduced the data collected as well as the depth of the discussion about some themes Implications for OT Practice OT practitioners can play a role in helping clients develop a new self in the presence of lost occupations. Some clients may experience a feeling of being stuck and unable to change LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 43 their situation. Occupational therapy practitioners can provide strategies and opportunities for the client to develop self-efficacy. Occupational therapy practitioners, through activity analysis can assist clients in making modifications to everyday activities, working to help a client progress from feeling stuck to developing their new self. Clients have many roles in the community and occupational therapy practitioners can help mitigate the impact of the loss of these roles and return to community-based occupations. Occupational therapists can help clients translate the pride they feel in making modifications at home to pride in being able to make modifications at work. Recognizing that recovery can continue long after discharge from traditional services, occupational therapy has much to contribute as individuals with BI return to the community and the workplace. Acknowledgements We want to thank the Indiana Brain Injury Association and Wendy Waldman, BSW, CBIST for their willingness to help share our study with Indiana Brain Injury Support Groups. We also want to thank each of our participants for sharing their experiences and time with us. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 44 References Adams, D., & Dahdah, M. (2016). Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers. NeuroRehabilitation, 39(2), 223-237. https://doi.org/10.3233/NRE-161353 Bivona, U., Formisano, R., De Laurentiis, S., Accetta, N., Di Cosimo, M., Massicci, R., Ciurli, P., Azicnuda, E., Silvestro, D., Sabatini, U., Falletta Caravasso, C., Carlesimo, G., Caltagirone, C., and Costa, A. (2015) Theory of mind impairment after severe traumatic Restorative Neurology and Neuroscience, 33(3), 335 345 https://doi.org/10.3233/RNN-140484 Brands, I., Stapert, S., Kohler, S., Wade, D., & van Heughten, C. (2015). 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Journal of Communication in Healthcare, 9(3), 190 199. https://doi.org/10.1080/17538068.2016.1186337 Zarb, G. (1992). On the road to damascus: First steps towards changing the relations of disability research production. Disability, Handicap & Society, 7(2), 125-138 https://doi.org/10.1080/02674649266780161 LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 54 APPENDIX A Research Question and Photo Assignments Research Question What is the experience of a person with a brain injury in return to community-based occupations (ie work, school, social participation, leisure, etc)? Photo Assignment 1 1. Take a photo that represents a time when you first became aware of your limitations or success (at work, school, leisure, social participation). 2. Take a photo that represents a time when you felt different in a group of people (at work, school, leisure, social participation). Photo Assignment 2 1. Take a photo of an object that you struggled with on a day to day basis. 2. Take a photo of something that can trigger positive or negative thoughts about your disability. Photo Assignment 3 1. Take a photo of something that gave you confidence (at work, school, leisure, social participation). 2. Take a photo of something you want to accomplish (at work, school, leisure, social participation). LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 55 APPENDIX B Interview Questions Questions for Photo Assignment 1 1. Describe how this photo represents what it is like to feel different in a group of people at work/school/leisure activities/or in social participation. What groups make you feel comfortable? 2. When looking at this photo, tell me how your brain injury made you feel different in this group of people. 3. How does this photo represent your changes in behavior when you feel different in a group of people at work/school/leisure activities/or in social participation? 4. How would you describe to your peers how your feelings are different in this photo compared to before your brain injury? How does this picture represent that? 5. Describe how this photo represents a time when you first noticed your limitations at work/school/leisure activities/or in social participation since you experienced a brain injury. 6. When looking at this photo, describe the barriers that limited you before and after the brain injury. 7. How does this picture depict a time when you felt successful at work/school/leisure activities/or in social participation since your brain injury. 8. How does this photo show change in success before and after your brain injury? 9. Describe how this photo reminds you of a time when you felt isolated at work/school/leisure/social participation since your brain injury. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 56 Questions for Photo Assignment 2 1. How does this photo represent what you struggle with on a day to day basis? 2. Describe how this photo portrays your daily routine. 3. How does this photo represent any ongoing symptoms you experience throughout the day? What are these symptoms and how do they impact you? 4. How does the object in this photo depict your current struggles compared to those you experienced at earlier stages in your brain injury? 5. Describe how this photo expresses a negative thought about your brain injury. This could be a barrier you have experienced, a specific moment, or task you could not accomplish. 6. Describe how this photo represents a positive thought about your brain injury. 7. Describe the feelings you felt when taking this photo. 8. What things does this photo remind you of that were enjoyable before your brain injury, but not anymore? Questions for Photo Assignment 3 1. Describe this photo and a time you were confident at school, work or with your friends or family. How were the people present helpful in making you feel confident? 2. Describe how this photo shows what it is to feel confident at school, work or with your friends or family. 3. What about this picture makes you feel confident? What characteristics do you have that have helped your confidence? 4. Describe how this photo might represent how your confidence has changed before and after your brain injury. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 57 5. Describe how this photo represents a time that you accomplished something important to you at school, work, or with your friends or family. How did this make you feel? 6. Describe how this photo represents something you would like to accomplish at school, work or with your friends or family. What are you doing to accomplish this? 7. How could this photo express a time when you failed to accomplish something at school, work, or in your social life? What did you do to move forward after this failure? 8. Describe to me how this photo displays how accomplishing your goals may have changed since your brain injury. LIVED EXPERIENCES OF INDIVIDUALS WITH BRAIN INJURY 58 APPENDIX C Safety Procedures Instruction Cards: 1. Take pictures in a safe location. 2. Do not take photos while you are walking/driving. 3. Position yourself so you have the best stability 4. Make sure you understand the guidelines and timeline of the photo assignment so as not to be in a harmful situation. 5. 6. Respect the rights of others when taking photos--do not take pictures of other people without their consent. Signature: Email: decleenek@uindy.edu Breeden Reasearch Manuscript Final Audit Report Created: 2020-12-14 By: Kristin Arnes (arnesk@uindy.edu) Status: Signed Transaction ID: CBJCHBCAABAA-MytlFTJE9UfBnsGU__gEs5Ojp2j4rJd 2020-12-14 "Breeden Reasearch Manuscript" History Document created by Kristin Arnes (arnesk@uindy.edu) 2020-12-14 - 3:39:00 PM GMT- IP address: 199.8.28.36 Document emailed to Kate DeCleene Huber (decleenek@uindy.edu) for signature 2020-12-14 - 3:39:47 PM GMT Email viewed by Kate DeCleene Huber (decleenek@uindy.edu) 2020-12-14 - 3:40:36 PM GMT- IP address: 69.108.47.154 Document e-signed by Kate DeCleene Huber (decleenek@uindy.edu) Signature Date: 2020-12-14 - 6:11:02 PM GMT - Time Source: server- IP address: 69.108.47.154 Agreement completed. 2020-12-14 - 6:11:02 PM GMT  ...