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The Perception of Diabetes Self-Management Education and Support Among Primary Care Providers 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: Kelley Sky-Eagle, MS, RDN/LD, CDCES Copyright June 23rd, 2023 By: Kelley Sky-Eagle, MS, RDN/LD, CDCES All rights reserved Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair ______________________________ Lisa Borrero, PhD, FAGHE Committee Member ______________________________ Brooke Baker, MSN, RN, CDCES 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 PERCEPTION OF DIABETES SELF-MANAGEMENT The Perception of Diabetes Self-Management Education and Support Among Primary Care Providers Kelley Sky-Eagle Department of Interprofessional Health and Aging Studies, University of Indianapolis 1 THE PERCEPTION OF DIABETES SELF-MANAGEMENT 2 Abstract Background: It is estimated that 35 million Americans have type 2 diabetes. Many diagnosed patients will not receive Diabetes Self-Management Education and Support (DSMES) after diagnosis. Referrals entered on behalf of the primary care provider (PCP) are necessary for diabetes education. Purpose: This study aimed to understand the perspectives of PCPs regarding DSMES in hopes of identifying barriers or prompters when entering referrals to DSMES. Method: Ten providers were interviewed using a qualitative basic interpretive design. A semistructured guide was used to allow for impromptu data exploration as needed. Following the interviews, data were reduced to codes and sorted in thematic groups. Results: Data analysis found that the participants did not have opinions of DSMES, as it was considered too difficult to access. Themes regarding poor accessibility included: limited patient access to education (due to proximity, appointment availability, or finances), limited provider access to the patient, and limited provider access to the diabetes educator. Discussion: Providers suggested using in-clinic education, outpatient resources (e.g., home health workers and nurse navigators), and telemedicine to improve DSMES accessibility. Furthermore, enhancing interprofessional collaboration within the medical community can encourage referral and DSMES attendance while improving the overall patient care experience. Keywords: diabetes education, access, referral THE PERCEPTION OF DIABETES SELF-MANAGEMENT 3 Acknowledgments Words cannot express my gratitude to Dr. Laura Santurri, who bravely championed this dissertation as my committee chair. This manuscript would not have been possible without your invaluable feedback, limitless patience, and encouraging nature. Further, I was able to complete this feat thanks to the substantial contributions of my remaining committee members. The qualitative expertise provided by Dr. Borrero was unmatched, and it motivated this inexperienced researcher to continue, even while drowning in data. Finally, I am immensely grateful to my content expert, Brooke Baker. Your knowledge of diabetes and experiences as a practitioner were priceless in this journey. I am grateful for the neverending support of my husband, Robert. I cannot thank you enough for your child wrangling, home cleaning, and errand running, all while I would disappear for hours to research and write. You are the glue that holds our family together. I would be remiss in not mentioning my parents and in-laws. Your selflessness and willingness to help care for your grandchildren so often have made this dissertation a reality. I want to acknowledge my classmate and friend, who is now more like family, Kayleigh. I am confident I wouldnt have completed this without your moral support. Lastly, to my children, Teddy and Izzy, I did this all for you. To show you that you can do hard things, even when you feel that you cant. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 4 Table of Contents Introduction..5 Purpose Statement6 Research Questions..6 Literature Review.7 Method...13 Results....20 Theme 1: Limited Access to Patient Education.20 Theme 2: Limited Provider Access to Patient...23 Theme 3: Limited Provider Access to the Educator.24 Discussion..25 Implications for Practice and Future Research30 Conclusion31 References..33 Appendices.43 Qualitative Interview Guide.43 THE PERCEPTION OF DIABETES SELF-MANAGEMENT 5 The Perception of Diabetes Self-Management Education and Support Among Primary Care Providers The American Diabetes Association (ADA) estimates that 35 million Americans have type 2 diabetes (2019). The rate of those diagnosed with diabetes has increased steadily, and it is projected that 1 in 3 individuals will develop type 2 diabetes by 2050 (Powers et al., 2015). Due to the increased prevalence, diabetes has significantly impacted healthcare costs within the United States. The national financial burden of diabetes was estimated at 245 billion dollars in 2012 and has continued to rise, reaching an estimated 327 billion dollars in 2017 (American Diabetes Association, 2018). As such, the average person with diabetes (PWD) will ultimately spend 2.3 times the amount on medical expenses compared to persons without the disease (American Diabetes Association, 2013). Problem Statement Numerous studies have demonstrated the benefits of diabetes education in improving patient health outcomes. Delayed onset of complications, healthy coping, and improved quality of life are a few positive outcomes associated with diabetes self-management education and support (DSMES) (American Diabetes Association, n.d.). However, the Centers for Disease Control and Prevention (CDC) estimate that as few as 5% of Medicare recipients and 7.8% of privately insured individuals receive DSMES within the first year of diagnosis (2018), while fewer than half of those diagnosed will receive DSMES within their lifetime (Azam et al., 2018). As referrals from an established primary care provider (PCP) are a prerequisite for DSMES, the lack of systematically entered referrals is a concern within the diabetes educator community (Azam et al., 2016). In addition, previously published literature has identified a lack of PCP knowledge regarding DSMES, lack of available local DSMES, lack of perceived benefit, THE PERCEPTION OF DIABETES SELF-MANAGEMENT 6 poor understanding of billing and reimbursement procedures, and daunting or confusing referral processes as potential barriers to referral (Centers for Disease Control and Prevention, 2018). However, there are few studies qualitatively examining DSMES from the PCP perspective. Purpose Statement The purpose of this study is to supplement the existing qualitative research regarding the provider perspective of DSMES. Research Questions This study will address the following research questions: How do primary care providers treating patients with diabetes perceive diabetes selfmanagement education following diagnosis? o What inhibits or prompts the initiation of the diabetes self-management education referral process? Significance of the Study Minimal studies have examined provider perceptions of formal training in managing diabetes. Studies identified are few and small in scale; therefore, further research is indicated. This study will supplement the published literature regarding the lack of referrals compared to the sizeable population living with the disease. The studys findings will shed light upon the issue and contribute to the literature regarding the PCPs perceived value of DSMES within the healthcare field. Establishing a more extensive understanding of the PCP perspective will allow for potential educational opportunities, possibly leading to an increased referral rate. Definition of Terms The following definition should be noted: THE PERCEPTION OF DIABETES SELF-MANAGEMENT 7 Diabetes Self-Management Education and Support (DSMES) the ongoing process of facilitating the knowledge, skill, and ability necessary for diabetes self-care (Funnell et al., 2010, p. 89) Literature Review Diabetes As noted, barriers to DSMES referral have been identified within the literature, but few studies have qualitatively examined the PCP perspective of DSMES. This study explored these gaps, determining to what extent PCPs feel DSMES to be ultimately valuable, necessary, and beneficial to the patient. Furthermore, there is minimal knowledge regarding factors that have been shown to prompt referral to DSMES services. Identification of the aforementioned will likely result in a more extensive understanding of the provider perspective, and ideally, lead to an increase in individuals receiving DSMES services. Diabetes is a chronic disease in which the pancreas does not produce adequate insulin. Additionally, the cells within the body may become insulin resistant, meaning the body cannot appropriately utilize produced insulin to digest carbohydrates (World Health Organization [WHO], 2018). Type 1 diabetes, often diagnosed in childhood or young adulthood, is diagnosed when the pancreas produces little (or no) insulin (WHO, 2018). As such, type 1 management requires multiple daily insulin injections and close carbohydrate and glucose monitoring to maintain normal blood sugar levels (CDC, 2020a). Type 2 diabetes, compromising 90% of the population with diabetes, is most often diagnosed in adults older than 45 (Diabetes UK, n.d.). Individuals diagnosed with type 2 diabetes are often plagued with a poorly functioning pancreas, as well as insulin resistance (WHO, 2018). Diagnostic criteria for type 2 diabetes include a repeatable fasting glucose level of > 126 mg/dL, a repeatable random > 200 mg/dL in addition to hyperglycemic symptoms, or a Hemoglobin THE PERCEPTION OF DIABETES SELF-MANAGEMENT 8 A1C of > 6.5% (ADA, n.d.). Lastly, prediabetes is diagnosed when the Hemoglobin A1C reaches 5.7-6.4%, but it is not yet elevated to the 6.5% threshold required for diabetes (ADA, n.d.). Symptoms of type 2 diabetes are often less noticeable than those of type 1, and long-term hyperglycemic complications are often identified along with the diagnosis itself (WHO, 2018). Complications of diabetes, in the worst case, can be debilitating and life-threatening, including loss of vision, end-stage renal disease, amputation, and stroke (Cleveland Clinic, 2017). Therefore, due to the prevalence of type 2 and the high incidence of complications, type 2 diabetes will be the primary focus of the study. Prognosis in type 2 diabetes is strongly correlated with the degree of glycemic control, with inadequate control resulting in an anticipated 10-year reduction in life expectancy (Diabetes UK, 2019). While heart disease is the primary contributor to diabetes-related morbidity and mortality, adequate glycemic control has significantly mitigated this risk (Lind et al., 2012; Seshasai et al., 2011). Early glycemic control, within three months of initial diagnosis, has also been shown to be a predictor of early mortality in type 2 diabetes (Kerr et al., 2011). Additionally, initiation of diabetes education is thought to reduce the progression of prediabetes to type 2 diabetes by 58% if less than 60 years of age or 71% if greater than 60 years of age (CDC, 2020b). Therefore, timely DSMES in newly diagnosed individuals with type 2 diabetes is beneficial and potentially life-saving. Diabetes Self-Management Education and Support Notably, diabetes is a highly complex disease that often requires professional assistance to manage. Therefore, DSMES is thought to be vital for individuals suffering from the disease (Association of Diabetes Care and Education Specialists [ADCES], 2017). According to the THE PERCEPTION OF DIABETES SELF-MANAGEMENT 9 ADCES (2017), diabetes self-management education and support focuses on developing the knowledge and skills which are necessary for the daily management of diabetes, as well as prediabetes. When compared to individuals attending versus non-attending diabetes education, an average 0.6% reduction in HgbA1C can be anticipated; furthermore, an approximate HgbA1C reduction of 1% has been associated with a 40% reduction in nerve, eye, and kidney complications, and a 14% reduction in heart attack (ADCES, 2015). The aforementioned physical effects on the health of the person with diabetes can also significantly impact the quality of life (QoL) (Tikkalinou et al., 2017). Trikkalinou et al. further identified psychological outcomes (i.e., depression) and social outcomes (i.e., strained relationships with family and friends) as additional contributors to poor QoL scores in individuals with diabetes (2017). Long-term QoL improvement is thought to result from diabetes education (Trikkalinou et al., 2017). Regardless, DSMES is an often-underutilized resource within the medical community. Healthcare providers openly recognize the benefits of DSMES; however, a study by Azam et al. indicated that a mere 7% of 9,992 patients had received education regarding the management of the disease since being diagnosed (2016). Provider Referral Provider referral, a mandatory action to initiate the DSMES process, has been previously identified as a barrier to diabetes education (CDC, 2018). The literature reveals numerous possible barriers to DSMES referral. First, communication between patient and physician was a common concern of numerous persons with diabetes, often reporting reluctance to discuss diabetes-related concerns with associated providers (Beverly et al., 2012; DiZazzo-Miller et al., 2017; Heisler et al., 2009; Stenov et al., 2018). A limited PCP knowledge base of the disease, ultimately inhibiting patient-provider discussion, is considered a second limiting factor in the THE PERCEPTION OF DIABETES SELF-MANAGEMENT 10 referring process. Lastly, provider workload was often reported as a barrier to entering referrals (Balcou-Debussche, 2008; Celeste-Harris & Maryniuk, 2006; Heisler et al., 2009). Communication. Effective communication between provider and patient is critical in the management of diabetes. Open lines of communication have been shown to improve patient satisfaction, treatment compliance, and overall health outcomes (Beverly et al., 2012). However, it is noted throughout the literature that patients are often reluctant to discuss diabetes-related concerns with their primary care provider (Beverly et al., 2012; DiZazzo-Miller et al., 2017; Heisler et al., 2009; Jalil et al., 2017; Stenov et al., 2018). In order to improve patient and provider communication, the barriers preventing such communication must be considered. First, many patients report a great deal of unfamiliarity with the disease state itself and, as such, are still determining what questions should be asked in-office visits (Heisler et al., 2009). Secondarily, it was noted that when diabetes concerns were addressed with the providers, PCPs often utilized intimidation by self-reported scare tactics, threatening dialysis, amputation, and blindness to encourage compliance (DiZazzo-Miller et al., 2017). Finally, patients reported feeling belittled by healthcare providers (Stenov et al., 2018), while others reported provider annoyance when questions were asked (Jalil et al., 2017). Alternatively, the benefits of positive communication between the provider and patient have also been established in the literature. A collaborative approach is thought to enhance glycemic control as the PCP has extensive knowledge regarding diabetes treatment. In contrast, the patient has experience in the day-to-day management of the disease (e.g., finger sticks, taking medication, dietary adherence, etc.). (Burridge et al., 2015). Supplementally, patients have conveyed appreciation when being treated as a member of the diabetes treatment team, further emphasizing the importance of communication and collaboration (Hepworth et al., 2013). THE PERCEPTION OF DIABETES SELF-MANAGEMENT 11 Based on the above, poor communication has been established between provider and patient throughout the literature. Unfortunately, the lack of an open dialogue prevents the PCP from identifying those individuals who might benefit from DSMES. Thus, ineffective communication is thought to be an inhibitor in DSMES referral. Education. Diabetes is considered a difficult disease to treat due to its complex nature. Gaidhane et al. established that PCPs perceive the numerous management components (e.g., blood glucose monitoring, nutrition, and exercise) required in treatment as a significant challenge (2015). It was further discovered that PCPs self-report an ultimate lack of confidence when treating patients with the disease (Gaidhane et al., 2015). Many providers self-reported an inadequate knowledge base regarding the treatment of diabetes and the overall disease state itself (Balcou-Debussche, 2008; Holt et al., 2013; Torres et al., 2010). For example, as many as 90% of medical doctors and 70% of registered nurses reported receiving education regarding diabetes management at the collegiate level; however, the aforementioned did not find such training applicable to the actual treatment of patients (BalcouDebussche, 2008). In addition, providers also reported a knowledge gap in up-to-date teaching methodologies in diabetes education, as well as the happenings within diabetes education courses (Mogre et al., 2019; Gaidhane et al., 2015; Torres et al., 2009). Fortunately, providers are eager to learn more about the disease; as many as 96% of PCPs state that the availability of more diabetes training opportunities would be beneficial to one's practice (Balcou-Debussche, 2008). A survey of 2000 United Kingdom (UK) medical school graduates indicated a lack of confidence in diagnosing and treating diabetes; however, 70% of the doctors were eager to be trained in all facets of the disease (Smith et al., 2014). Alternatively, THE PERCEPTION OF DIABETES SELF-MANAGEMENT 12 many providers are familiar with the disease state; however, Mogre et al. identified a deficit in physician training in diabetes-related patient self-care (2019). It can be concluded that successful treatment is inhibited by unfamiliarity with the disease state and its management. As such, the likelihood of unawareness regarding DSMES services can also be assumed. Therefore, limitations in diabetes-related knowledge act as an ultimate inhibitor in DSME referral. Workload. Within the realm of diabetes management and education, research indicates that time constraints on behalf of the PCP are of great concern (Balcou-Debussche, 2008; Celeste-Harris & Maryniuk, 2006; Heisler et al., 2009). In a study by Heisler et al. (2009), patients reported feeling they needed help adequately gaining the physician's attention as the provider is often distracted and rushing through the appointment. Unfortunately, patients have reported low expectations of their providers due to these perceived time constraints (Heisler et al., 2009). The problem is recognized by patients and providers alike. Providers have recognized the lack of time as the primary shortcoming in providing successful diabetes education and management tools (Balcou-Debussche, 2008). Alternatively, a systematic review by Scheepers et al. determined that physicians' occupational well-being improved the quality of care (2015). Specifically, Bustamente et al. found that instances of a manageable workload led to a more consistent pattern of care in patients with diabetes (2017). It can ultimately be anticipated that an overwhelming caseload is an inhibitor in identifying patients who may benefit from DSMES services. As noted, barriers to DSMES referral have been identified within the literature, but few studies have qualitatively examined the PCP perspective of DSMES. The proposed study aims to examine these gaps, determining to what extent PCPs feel DSMES to be ultimately valuable, THE PERCEPTION OF DIABETES SELF-MANAGEMENT 13 necessary, and beneficial to the patient. Furthermore, there needs to be more knowledge regarding factors that have been shown to prompt referral to DSMES services. Identifying the aforementioned will likely result in a more extensive understanding of the provider perspective and, ideally, lead to an increase in individuals receiving DSMES services. Method In this proposed study, the researcher aimed to understand the meaning of primary care providers' (PCPs) practical experiences with diabetes education. A qualitative basic interpretive research design was used, as this approach allowed an understanding of the participant's perspectives (Merriam & Grenier, 2019). This study design was also selected as ideal as the primary researcher is the instrument, and the study was inductive while the outcomes were descriptive (Merriam & Grenier, 2019). Data were collected via interviews and inductively analyzed, generating common themes reflective of all interviews. The University of Indianapolis Institutional Review Board (IRB) granted approval prior to study commencement. Participants Individuals eligible for the study were PCPs with the ability to refer to diabetes education, including nurse practitioners (NPs), physician assistants (PAs), medical doctors (MDs), and doctors of osteopathic medicine (DOs). Only PCPs who work in the field of outpatient general medicine were included. Secondarily, a mixture of urban and rural practicing PCPs was utilized. Such diversity revealed different perspectives regarding diabetes education. Exclusion criteria included providers practicing specialty medicine, as more in-depth experience in diabetes management was necessary. In addition, providers who were not able to speak and read English were excluded, as all study procedures took place in English. Setting THE PERCEPTION OF DIABETES SELF-MANAGEMENT 14 It is estimated that 12.4% of Arkansans and 11.4% of Oklahomans have type 1 or type 2 diabetes, with the vast majority of those being diagnosed with type 2 (CDC, 2021). The presence of the disease within both states is greater than the national average. Further, Oklahoma is outpacing only eight states in terms of prevalence, while Arkansas is outpacing only four (CDC, 2021). Therefore, these states provided a preferable recruitment setting for the proposed study as PCPs are frequently exposed to the treatment of the disease; thus, the exposure of rich data was anticipated. Procedures Sampling and Recruitment This study involved a maximum variation sampling approach. This type of sampling approach is used to create a sample of diversity (Creswell & Poth, 2018) and was used in this study to recruit PCPs from various locations and educational backgrounds. A sample size of ten PCPs was expected and achieved. The number allowed for a mixed sample of PCP types while remaining feasible, as PCPs can be challenging to recruit (Signorelli et al., 2017). Additionally, a high information power strengthened the data, regardless of the small sample size. Malterud et al. found a smaller sample size appropriate when a high level of information was exposed (2015). A high information power was achieved in the current study with a specific sample and quality dialogue. A less extensive sample is indicated when participants needed for the study are highly specific (Malterud et al., 2015). As the researcher was seeking credentialed medical practitioners, a smaller sample size was deemed appropriate. Second, information power was demonstrated through high-quality dialogue. The researchers extensive experience as a diabetes educator THE PERCEPTION OF DIABETES SELF-MANAGEMENT 15 contributed to the quality of the interviews, allowing the researcher to address necessary topics with ease. Primary care providers are often challenging to recruit to participate in health-related research (Signorelli et al., 2017). Therefore, Signorelli et al. (2017) determined electronic communication to be the most accessible recruitment method for the proposed population. As such, participants were recruited electronically via two different methods. Participants were recruited via a flyer posted on social media (Facebook exclusively). The investigator shared it via her private page, and it was also requested that individuals share it with others if they so desired. Secondly, direct email communication was made with general medicine office managers. The email and flyer explained the intent of the study, the expectations and inclusion criteria of the PCPs who participated, and it included the primary investigator's contact information. The communication also clarified that all findings were confidential and were shared using numbered participant identifiers. Additionally, a gift card was offered to participants to be provided at the conclusion of the interview. Snowball sampling, a technique in which participants are asked to refer others (National Science Foundation, n.d.), was also utilized to recruit. When recruiting via email, a follow-up email of similar content was sent one week after the initial email to those office managers from whom a reply was not yet received. If a reply had still not been received two weeks after the follow-up email, the primary investigator contacted the office manager via telephone to verbally discuss the proposed study and potential PCP participation a final time. Through the recruitment communication, potential participants were instructed to contact the primary investigator directly via email to express interest. Participants were instructed to THE PERCEPTION OF DIABETES SELF-MANAGEMENT 16 provide information regarding the practice credential and the location of the practice. In addition, participants were asked to list any specialty certifications to verify inclusion criteria. Upon initial e-mail contact with the potential participant, the primary investigator reviewed the study's intent. Then, the date and time for the interview was established. Informed Consent The informed consent (IC) process was completed with all participants in an ethical manner. Specifically, the participants were provided with a copy of an informed consent form via email prior to the interview. The form contained the following information: the study's purpose and procedures, the role and rights of the participant, the duration of their involvement, and the methods by which confidentiality will be maintained (Manti & Licari, 2018). In addition, the consent form discussed the importance of utilizing an audio recorder to guarantee that data was accurately received. Finally, the document was reviewed, all questions/concerns were addressed, and consent was obtained verbally. A signature was deemed unnecessary as a signed informed consent document would be the only patient identifier within the study. The informed consent process was conducted virtually by the primary investigator before beginning each interview, with each participant situated in a convenient, private location. Due to the social distancing requirements of COVID-19 at the time, the investigator arranged a meeting that utilized a video conferencing software of the PCP's choice (e.g., Zoom, Google Meets, Skype, etc.). The informed consent discussion was limited to 15 minutes to be respectful of time unless the participant requested an extended discussion period. The participant was reminded that they could stop the interview at any time, or decline to answer a particular question, if they felt uncomfortable. The participant was informed that the interview would last approximately 3060 minutes. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 17 Data Collection The primary investigator collected data through the use of individual semi-structured interviews. In addition, data were collected utilizing a video conferencing software of the provider's choice, as the transmission of COVID-19 was a notable public health concern. The interview began with broad questions. Next, the focus narrowed to allow for a more in-depth understanding of the topic. While a scripted interview guide was used (see Appendix), the semi-structured format allowed the questions to vary slightly depending on participant responses. The use of probing, as well as follow-up questions, promoted further discussion to reveal relevant data. When all questions were exhausted, and it became apparent that the participant had no other perceptions to be explored, the interview concluded. At this point, the investigator further discussed privacy, informing the participant that responses were to be stored in a password-protected document. The participant was made aware of an anticipated timeline for data disposal. The investigator's email address and telephone number were provided at this time, and the participants were encouraged to contact the investigator should any need arise. The participants were informed to expect a transcript within 7-10 days to provide comments about interview accuracy. The gift card for participating was also included within this email. Data Management and Analysis Each interview was transcribed verbatim within 7-10 days using the audio-to-text service Temi. After the transcript was reviewed for accuracy and de-identified, it was exported as a Microsoft Word file. To maintain participant confidentiality, the naming format for audio files and transcriptions used an identification number instead of the participant's name. In addition, all study documents were password-protected in Dedoose (Version 9.0.62). THE PERCEPTION OF DIABETES SELF-MANAGEMENT 18 Using a conventional content analysis approach, Dedoose was used for all data analysis (Hsieh & Shannon, 2005). This process involved generalized data reduction, determining relevant data to the research focus, and transforming it into a simplified format (i.e., codes) (LaFrance, 2015). During this process, all interviews were read multiple times, keywords and phrases were identified, and a relevant code was assigned to each noted section. It is also possible for a section to receive more than one code (LaFrance, 2015). Initial coding occurred upon the interview transcription's immediate completion, within 7-10 days. Following the initial coding, the transcript and associated interpretations were sent to the participant to verify accuracy (i.e., member checking). Member checking minimized investigator bias while results were reviewed and analyzed (Anney, 2014). The participants were then asked to provide comments on the data. The investigator made appropriate edits, and the edited document was then resent until deemed acceptable by the participant. A secondary investigator with extensive experience conducting and disseminating qualitative research reviewed the investigator's coding to ensure accuracy. Following the first interview and transcription, the secondary investigator and the PI independently coded the data to ensure that the coding was accurate and appropriate and showed no evidence of bias. The primary and secondary investigator then collaborated to review the developed codes and the codebook. The secondary investigators interpretations were integrated appropriately to deepen the credibility of the data. The primary investigator then re-coded the data within 14 days to encourage additional credibility. Upon completion of the re-coding, the foundation for a codebook was complete. Boundaries for each code, consisting of a label and definition, were articulated (Creswell & Poth, 2018). Codes were then organized into categories via thematic analysis. Next, data were grouped THE PERCEPTION OF DIABETES SELF-MANAGEMENT 19 into themes and, ultimately, thematic groups, which allowed for analysis of the meanings and connection to the research questions (LaFrance, 2015). Themes were then transferred to an overarching theme table. Participant quotations were organized by category and quotations were listed by a participant ID number and transcript location. Rigor/Trustworthiness Per the recommendation of Creswell and Poth (2018), rigor and trustworthiness were ensured in the study by a minimum of two different methods. First, interviewees were consulted following interview completion regarding the accuracy of the interview transcripts and interpretations. Also known as "member checking," the process verified the interviewer's understanding and ultimately promoted credibility (Creswell & Poth, 2018). Second, the coderecode strategy, also referred to as code agreement, was utilized by the primary researcher. The code agreement consisted of a secondary coding procedure performed by the primary investigator, and as findings were consistent, dependability was enhanced (Anney, 2014). In addition, according to Anney (2014), the re-code allowed the researcher to gain a more in-depth understanding of the participant's responses and data patterns. Transferability is key in qualitative research to ensure that the context of one study may be applicable to another (Stahl & King, 2020). Transferability was achieved through thick description by the primary researcher, which must be done through an in-depth description of the participants (Stahl & King, 2020). The results chapter includes: number of participants, practice credentials, and practice environment (rural versus urban). The potential for bias is possible when examining an issue with which an individual is highly familiar (Creswell & Poth, 2018). As the primary researcher is a diabetes educator, bias was a cause for concern. According to Henderson and Rheault (2004), confirmability can be THE PERCEPTION OF DIABETES SELF-MANAGEMENT 20 promoted through reflexive analysis (via a field journal). Upon completing each interview, the investigator reflectively journaled any relevant thoughts, questions, and observations, which helped to minimize bias. Results Ten participants completed the study. Interviews were conducted from September 2021 to December 2022, and due to COVID-19 concerns, they were all completed via Zoom video conferencing software. The interview duration ranged from 21 to 36 minutes, with an average length of 31. All participant quotations below are referenced by the participants de-identifier to allow for confidentiality. The participants were four nurse practitioners (NP), four medical doctors (MD), one osteopathic doctor (DO), and one physician assistant (PA). The providers practice settings varied significantly. Five providers practiced in an urban area, while four practiced in a more rural setting. The final provider was considered to practice in a combined environment as this participant was practicing in two clinics: one rural and one urban. While the studys research question focused on providers perspectives of DSMES, data analysis revealed that the participants often did not have opinions of DSMES, as it was considered too difficult to access. The interviews consistently reflected this, as the three themes that emerged from the data were limited patient access to education, limited provider access to the patient, and limited provider access to the diabetes educator. Theme 1: Limited Patient Access to Education If the patient cannot attend DSMES physically, referral on behalf of the provider is useless. The interviews revealed numerous barriers in the realm of patient access to attendance. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 21 Specifically, proximity, appointment availability, and financial constraints were the most frequently reported. Proximity As discussed above, many of the study participants (approximately half) provide care in a rural health environment. In several instances, the participants reported that the closest diabetes educator or endocrinologist was an approximate 1-1.5-hour drive to access. Participant HM stated plainly, "You [the patient] are open to go to diabetic teaching, but the educator is an hour away. They aren't going to go." She further stated, "It would be nice to have someone local. I like the idea of having one umbrella. You [the patient] go to one clinic for everything. Participants frequently mentioned the benefit of an all-in-one healthcare setting to minimize the travel burden upon patients, especially those living in a more rural setting. Specifically, patients would be more likely to attend diabetes education if the trip could be combined with the provision of additional care. Participant JJ stated, I have one diabetic patient that lives in Hughes, and she relies completely on the transit people to bring her. Sometimes they bring her at 8:30, and they don't come back to get her until 1230." Many providers' visits are limited to 30 minutes or less. The possibility of "in-house diabetes education in this instance would allow for successful education without additional travel burden. Numerous providers spoke explicitly about the burden of finances and its impact on the patient's ability to travel to diabetes education. Providers repetitively talked about the lack of public transport available to patients, and Participant AF even stated, Some of these people ride their lawnmowers to the clinic." Unless the patient is within walking distance, transport was identified as a significant barrier to attending education. Appointment Availability THE PERCEPTION OF DIABETES SELF-MANAGEMENT 22 Should patients secure transportation to an appointment, a secondary concern identified by several providers is the waiting time associated with access to educators and diabetes specialists. "Our nearest endocrinologist would be Memphis, Little Rock, or Jonesboro, an average distance of 2 hours round trip, Endocrine is one of the specialties that it's harder to get patients into. We [patient and provider] may wait three months or longer, states Participant JM. Participant JJ said, "The hospital nutritionist or dietician is available, but it's hard to get an appointment. Uh, you know, she's got limited times that she can do it. If a patient were planning to attend diabetes education and seek care with a specialist, an extensive waiting period might allow a patient's interest in attendance to wane. Finances Providers frequently mentioned concerns about patients failure to meet base-level care needs. Specifically, providers repeatedly mentioned the patients need to prioritize securing food for the household. Participant LG stated, If they have to pick between feeding their families, theyre going to pick food for their family. Then the same goes for the kinds of foods theyre going to pick. The cheapest things that will feed their family the most. Participant JM echoed the sentiment of LG, I got patients that are on food stamps. They're going to get the max of food stamps. They're going to load up on carbs, potatoes, and rice, and things that stretch their available funds. You can't expect them to spend their money on kale . Similarly, participants also mentioned patients frequent inability to afford other highpriority items (e.g., medications). Patients often feel incredibly discouraged in providing selfcare due to the aforementioned financial limitations. Participant MC stated, It's sort of a sense of, um, not just denial, but kind of like, why bother fatalism? That kind of thing." Due to the THE PERCEPTION OF DIABETES SELF-MANAGEMENT 23 patients innate need to prioritize base-level diabetes needs, it is fair to expect that diabetes education attendance would take a lower priority. Theme 2: Limited Provider Access to the Patient The caseload of the practicing primary care provider is substantial, and this was a significant recurring issue mentioned throughout the completed interviews. Providers reported time constraints when providing basic care to patients and, as such, reported severe limitations in creating time to facilitate diabetes education. When prompted regarding workload, participant MAL stated, "we can see up to 70 patients a day, and there's only one provider there. I don't always have the time to spend that I need on them. I try to spend a little extra time, but it's hard." Participants often desired to spend time educating or facilitating education with the patients, but time constraints were often too significant. Participant AF echoed, that's something [workload] I've really been struggling with a lot because I do want time to talk to them about making sure they get all their screenings and, you know, doing all that stuff that comes along with diabetes. Participant JM also reported that 60-80 daily patients were not abnormal at certain stages of his career, stating, I wish I had 20 minutes with each one just for education, but you just do what you can with the time you've got. Multiple participants reported that clinic visits have often been shortened to a brief 10-20 minutes to accommodate the substantial patient volume. Furthermore, the shortened visit must include all the needed patient care, and it is often not focused solely on diabetes care. Participant AF stated, For that specific patient population, it's really tough because diabetes is not typically like on its own as a diagnosis. You've got hypertension, hyperlipidemia, kidney disease, you know, all of those things." Often, patient priorities can differ from the providers, leading to variances in the appointment time allocation. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 24 Participant LG stated, If you're managing diabetes, but their main concern is depression I mean, it's just not something I get to pick and choose what I do. So, there are times I can't focus on their blood sugar. I can't focus on diabetes management. To provide an additional barrier around educating or facilitating education, Participant AF voiced significant frustration regarding the hospital standards when referring to education. Nurse practitioners are not able to order it. It has to be ordered under a doctor. That's one of those things where I'm like, Okay, I can prescribe all the medication to treat it, but I can't order education? she mused. Theme 3: Limited Provider Access to the Educator Participants complained of numerous barriers to contacting educators before and after attending education. Due to poorly established relationships with area educators, providers are often unsure how to facilitate the first crucial step within the education process (i.e., the referral). Participant MM described attempting to refer patients to local educators, I tried to call the nutritionist a time or two. I'm not sure if she had got ever gotten my messages. The participant continued, I haven't talked to the home health diabetes educator. I just know that there's a program, but we don't work closely." Participants described these frustrations in attempting to refer to education with no initial return in contact with the patient or physician. Participant JJ wished for increased visibility of area educators stating, "I almost wish we had another educator that came around and said, Okay, don't forget about us. How can we do this together better? What can we do together to help that patient succeed? We really don't have that. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 25 When the patients have attended education, communication remains a point of contention amongst the interviewed providers. Numerous providers complained of poor educator follow-up regarding patient care plan changes. Participant AF stated, Its really frustrating to see a patient like, Okay, you're on 20 units of insulin. Oh no, now you're on 40 units with meals or whatever. So, then I feel like I've really been out of the loop. Other providers also stressed the importance of consistent follow-up to provide the best possible patient care. Participant LG stated, The most helpful thing to me personally is knowing why we're doing somethingwhat tips you gave, what resources you gave that way, I can be involved in the care as well and try to reiterate those parts. Finally, participant DM1 voiced immense frustration regarding the educator's failure to communicate with her as the primary care provider. The participant's experience had sometimes involved educators excluding her entirely and simply attempting to facilitate patient care with an endocrinologist (diabetes specialist) in her place. She stated, I feel like they [educators] don't always respect me. I want to have a relationship with them, and I appreciate their recommendations and observations, but I think what it leads to is loss of the patients confidence in my ability to care for them. Discussion Whether a patient has established or newly diagnosed diabetes, Diabetes SelfManagement Education and Support (DSMES) attendance is critical in successfully managing the disease. However, a referral on behalf of ones primary care provider (PCP) is necessary to attend. This study evaluated the perspectives of PCPs, attempting to uncover underlying barriers or prompters to referral. An extensive literature review identified numerous barriers surrounding provider referral and patient attendance. Many of those reasons are echoed in the results of this THE PERCEPTION OF DIABETES SELF-MANAGEMENT 26 study. Identified barriers include poor patient access to diabetes education, finite provider access to the patient, and limited provider access to educators themselves. Theme 1: Limited Patient Access to Education Patient access to diabetes education has long been an issue when attending DSMES. Participants in this study voiced concerns regarding transport to DSMES (particularly in more rural areas). Coates et al. (2018) also reported patient complaints of long commutes to attend education, stating attendees would find it more feasible should providers offer educational services within their respective clinics. While some clinics offer in-house diabetes education services, this is not yet common practice within the medical field (Coates et al., 2018). Additionally, persons with diabetes (PWD) struggle to access education due to personal barriers within their daily life (Coates et al., 2018; Schwennesen et al., 2016). Participants interveiwed revealed that financial difficulties were of notable significance when attending diabetes education, and missed working days can become a non-negotiable for potential attendees. Similarly, Coates et al. (2018) and Schwennesen et al. (2016) found that patients were more willing to attend if classes were to be offered during non-working hours (i.e., evenings and weekends). Patients often prefer a support person in attendance; however, this is also highly unlikely when requiring extensive time off work (Schwennesen et al., 2016). Further complications arise around accessibility when the PWD does not feel they have received adequate notice, and individuals were indeed more likely to attend if given sufficient time to plan for said work hindrances (Schwennesen et al., 2016). To accommodate those with transportation or fiscal concerns, the participants suggested virtual care offered by nurses or home health workers to extend the reach of the diabetes educator. Barker et al. (2016) found that individuals who were isolated due to their geographic THE PERCEPTION OF DIABETES SELF-MANAGEMENT 27 location were more likely to attend diabetes education virtually. Telemedicine has also been shown to be as beneficial as in-person attendance when reviewing outcomes. The use of telemedicine technology is thought to increase motivation and improve the patients knowledge, while also minimizing the staffs workload (Molavynejad et al., 2022). Moreover, those who attended traditional and telehealth education were most likely to have a more active role in their diabetes self-care practices (Molavynejad et al., 2022). Theme 2: Limited Provider Access to the Patient Providers are notoriously overworked in primary care, and the investigator's findings were similar when completing this study. Providers reported 60-80 patients scheduled daily is a regular occurrence, and, as such, visits are often limited to 15 minutes (or less). Meeting a patient's extensive needs within a 15-minute time slot is an unreasonable and unrealistic request, particularly when considering the extensive comorbidities and complications of diabetes (Watts, 2014). In addition, providers interviewed reported a desire to perform an educational intervention. However, due to the discussed complex nature of the disease state, providers in this study often felt pressed to focus primarily on medication management. Providers interviewed in this study discussed the benefits of the nurse navigator role. Regular use of a nurse navigator would allow providers to focus on immediate medical interventions while also allocating time to focus on the day-to-day management details of chronic illness (Watts, 2014). In addition, nurse navigators could be responsible for prompt referral to DSMES or act as certified diabetes care and education specialists (CDCES), according to the participants. Furthermore, Watts et al. (2014) found that patient satisfaction significantly improved when paired with a nurse navigator to assist in the logistics of diabetes management. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 28 Interviewees also mentioned the benefit of home health workers in improving patient self-management skills, which would decrease the workload of the primary care provider. Home health workers have the potential to overcome obstacles around diabetes self-management through "extensive hands-on education, connecting patients to community resources, and assistance navigating the medical system" (Silverman et al., 2018, pp. 842). Additionally, home health workers have time allotments for phone follow-ups and additional unplanned visits, which is unrealistic for primary care providers (Silverman et al., 2018). Furthermore, like nurse navigators, home health nurses, therapists, dietitians, and pharmacists also have the potential to become CDCES and complete informal diabetes education within the home (Certification Board for Diabetes Care and Education, n.d.). Theme 3: Limited Provider Access to the Educator Awareness of interprofessional collaboration has increased throughout the past 50 years; however, it has come to be considered a medical necessity within the past 20 (Friederich et al., 2021). The need for improved collaborative care became evident when interviewing primary care providers for this study. Several providers complained of poor communication and collaboration with diabetes educators and other medical specialties. Friederich et al. (2021) found that fostering relationships among the medical professions increased awareness of the responsibilities of each professions role. Additionally, it can be beneficial to begin developing these relationships as early as undergraduate education (Friederich et al., 2021; Turrentine et al., 2016). Early medical education regarding interprofessional collaboration provided evidence of shared problem solving, conflict resolution, recognition of patient needs, shared decision making, knowledge and development of THE PERCEPTION OF DIABETES SELF-MANAGEMENT 29 one's professional role, communication, transfer of interprofessional learning, and identification of learning needs (Turrentine et al., 2016, pp. 38). The lack of these established relationships became increasingly evident throughout the studys interviews. Many providers reported not knowing local educators, unawareness regarding how to contact educators, and an overall unfamiliarity with the information to be provided by the educator. Numerous participants mentioned the possible benefits of a diabetes educator within the practice itself. The inclusion of a readily available educator would eliminate many of the barriers surrounding referral, as well as improve future coordination of the patients care. In a similar quantitative study examining the perspectives of Canadian PCPs, the providers were 55.3% likely to refer to an in-house diabetes educator when compared to only 18.4% likely to refer to an external diabetes educator (Szafran et al., 2019). Further, the increased interprofessional collaboration allowed the PCPs the ability to appropriately delegate education, monitoring, and medication management, which then resulted in improved overall patient care (Szafran et al., 2019). Limitations Yvonna Lincoln and Egon Guba found trustworthiness to be crucial in establishing worthy qualitative research (Qualitative Research Guidelines Project, 2008). As such, substantial efforts were made to strengthen the trustworthiness and minimize limitations of the current study. Trustworthy research is built upon a foundation of credibility, transferability, dependability, and confirmability (Creswell & Poth, 2018). The studys primary limitation is the PIs background as a diabetes educator. The potential for bias due to this was anticipated when planning for data collection. To minimize this bias, the researcher engaged in reflexive journaling following each interview. The journaling THE PERCEPTION OF DIABETES SELF-MANAGEMENT 30 process allowed the researcher to reflect upon her thoughts, feelings, or observations about the research process, ultimately minimizing bias and strengthening confirmability. However, a drawback of journaling is the possibility that the researcher may not fully grasp the reflective nature of the exercise (University of Edinburgh, 2021). As the PI is new to internal reflexivity, confirmability might have been more adequately demonstrated via a secondary avenue. A second limitation was noted by the PI regarding the establishment of credibility. Participants were asked to engage in member checking. This included having the participants review transcripts with interpretations following the initial interview to ensure all was conveyed and understood correctly regarding statements and the tone of the interview itself. The interviewed participants provided little to no feedback regarding the PIs interpretations. A considerable drawback in member checking is the participants tendency to want to be deemed a good respondent (The Qualitative Research Guidelines Project, 2018). As such, participants may have been reluctant to provide critical feedback to please the researcher. Implications for Practice and Future Research Several implications for future practice and research are made evident by this study, which are also echoed by the existing literature. First, to minimize logistical barriers surrounding the patient's attendance, diabetes education should be made more readily available to the PWD. The addition of telemedicine may be of benefit to improve the reach of the diabetes educator, and telehealth has indeed been shown to be feasible and effective in the delivery of diabetes education (Dhediya et al., 2022). Furthermore, the literature suggests that offering diabetes education via telemedicine can reduce the cost and burden upon the patient and, ultimately, improve the patients quality of life (Mastrogiannis et al., 2013). THE PERCEPTION OF DIABETES SELF-MANAGEMENT 31 Offering diabetes education through home health and nurse navigators would also make education more accessible to the PWD. In addition to becoming more readily available, diabetes education within the home has been shown to improve the overall practice of self-management behaviors (Lavelle et al., 2016). Lavelle et al. (2016) also suggest home health education might even allow for a more immediate identification of treatment barriers when compared to traditional diabetes education. Furthermore, the professional development of the patients care team would markedly improve care, as the need for established relationships was a significant barrier to referral and attendance. Building relationships as early as undergraduate education can enhance care for patients with diabetes. Relationships with in-clinic diabetes educators have been shown to improve diabetes education attendance (Szafran et al., 2019). Additionally, Miller-Rosales and Rodriguez discovered that the diabetes education experience markedly improved with each additional team member acting on the care team (2021). As such, more research surrounding collaborative care and diabetes education attendance would be of benefit. Conclusion Diabetes education is a significantly underused resource in primary care. While providers value education, referral rates remain low when considering the vast number of individuals diagnosed. The providers interviewed revealed several referral barriers, including poor patient access to diabetes education, finite provider access to the patient, and limited provider access to educators themselves. Providers suggested the use of in-clinic education, outpatient resources (e.g., home health workers and nurse navigators), and telemedicine to encourage the provision of diabetes education. Additionally, a greater focus on early interprofessional education would likely improve the relationships of practicing providers. More established relationships within THE PERCEPTION OF DIABETES SELF-MANAGEMENT 32 the medical community have the potential to encourage diabetes education attendance while also enhancing the patient care experience overall. THE PERCEPTION OF DIABETES SELF-MANAGEMENT 33 References American Diabetes Association. (2019). 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B., & McKay, G. A. (2014). Differences in the level of confidence in diabetes care between different groups of trainees: The (TOPDOC) Diabetes Study. BMC Medical Education, 14, 191. https://doi.org/10.1186/1472-692014-191 Stahl, N. A. & King, J. R. (2020). Expanding approaches for research: Understanding and using trustworthiness in qualitative research. Journal of Developmental Education, 44(1), 2628. https://files.eric.ed.gov/fulltext/EJ1320570.pdf Stenov, V., Hempler, N. F., Reventlow, S., & Wind, G. (2018). An ethnographic investigation of healthcare providers' approaches to facilitating personcentredness in group based diabetes education. Scandinavian Journal of Caring Sciences, 32(2), 783-792. http://dx.doi.org.ezproxy.uindy.edu/10.1111/scs.12509 Szafran, O., Kennett, S. L., Bell, N. R., & Torti, J. M. I. (2019). Interprofessional collaboration in diabetes care: Perceptions of family physicians practicing in or not in a primary health care team. BMC Family Practice, 20(1), 1-10. https://doi.org/10.1186/s12875-019-09329 THE PERCEPTION OF DIABETES SELF-MANAGEMENT 42 Torres, H. C., Rozemberg, B., Amaral, M. A., & Bodstein, R. C. (2010). Perceptions of primary healthcare professionals towards their role in type 2 diabetes mellitus patient education in Brazil. BMC Family Practice, 10, 583. doi:10.1186/1471-2458-10-583 Tikkalinou, A., Papazafiropoulou, A.K., & Melidonis, A. (2017). Type 2 diabetes and quality of life. World Journal of Diabetes, 8 (4), 120-192. doi: 10.4239/wjd.v8.i4.120 Turrentine, F.E., Rose, K.M., Hanks, J.B., Lorntz, B., Owen, J.A., Brashers, V.L., & Ramsdale, E.E. (2016). Interprofessional training enhances collaboration between nursing and medical students: A pilot study. Nurse Education Today, 40, 33-38. https://doi.org/10.1016/j.nedt.2016.01.024 University of Edinburgh. (2021, March 8). Reflective journals. Institute for academic development. https://www.ed.ac.uk/institute-academic-development/learningteaching/staff/assessment/online-remote/types/reflective-journals Watts, S.A., & Lucatorto, M. (2014). A review of recent literature - Nurse case managers in diabetes care: Equivalent or better outcomes compared to primary care providers. Current Diabetes Reports, 14(7), 1-9. DOI:10.1007/s11892-014-0504-2 World Health Organization. (2018, Oct 30). Diabetes. https://www.who.int/news-room/factsheets/detail/diabetes THE PERCEPTION OF DIABETES SELF-MANAGEMENT 43 Appendix Qualitative Interview Guide Opening Paragraph Thank you for agreeing to participate in this interview. My name is Kelley Sky-Eagle, and I am a Doctor of Health Sciences student at the University Indianapolis. I am conducting this interview as a component of my doctoral project. All interview responses will be entirely confidential; all of your identifying information will be excluded. Should there be any questions you do not wish to answer, simply choose to skip to the next question. The purpose of this study is to gain an understanding of health providers perceptions of diabetes self-management education and support (DSMES). The interview will take approximately 30-60 minutes of your time. The interview can be stopped at your request at any point. The interview will be audio recorded to ensure accurate and complete data collection. If you are comfortable with this, I will begin recording. Do you have any questions regarding the interview or the intent of the study? Interview Questions 1. Tell me what its like to approach the topic of diabetes with a patient. a. How do you address the topic of diabetes with a patient? 2. Can you tell me how your workload plays into the management of your time between patient care and patient education? a. What are some of the factors that influence how you prioritize patient education, especially when your time with a patient is limited? 3. Tell me about the process in your deciding to refer a patient to diabetes education. a. What factors prompt you to refer a patient to diabetes self-management education? THE PERCEPTION OF DIABETES SELF-MANAGEMENT 44 b. What is to be gained by the patient in attending diabetes education? 4. How closely do you work with diabetes educators in your area? a. What do you feel these educators do well in practice? b. What do you feel these educators could improve upon in practice? 5. What barriers do you believe exist in a patient effectively managing their disease state? a. What barriers do you believe exist in a patients attending diabetes education? b. What facilitators do you believe exist in a patients attending diabetes education? Closing Statement Thank you for choosing to participate in this interview. All of your responses will be stored in a protected document accessible to only myself. All collected data will be deleted within an appropriate timeframe. Again, thank you for participating. I look forward to sharing my results with you.  ...

... Physical Literacy and Motivation to Engage in Physical Activity after Bariatric Surgery 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: Deborah Pillarella, MEd Copyright June 22, 2023 By: Deborah Pillarella All rights reserved, MEd Approved by: Laura Santurri, PhD, MPH, CPH Committee Chair Elizabeth S. Moore, PhD Committee Member Carol Kennedy-Armbruster, 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 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Physical Literacy and Motivation to Engage in Physical Activity after Bariatric Surgery Deborah Pillarella Department of Interprofessional Health & Aging Studies, University of Indianapolis 1 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 2 Abstract Background: Long-term weight loss and improved health after bariatric surgery require patients to adhere to a healthy post-surgical lifestyle, including regular physical activity (PA). Physical literacy is a holistic, multifaceted concept fundamental to an individual's participation in lifelong PA. Physical literacy and its relationship to motivation to engage in PA after bariatric surgery is currently void from the patients journey. Purpose: This study explored a post-bariatric surgical patient population at two hospitals in Northwestern Indiana. It assessed if there was a relationship between perceived physical literacy and motivation to engage in PA after bariatric surgery. Method: This quantitative, non-experimental single-stage survey study used a crosssectional design. The population was a homogeneous, convenience, non-random sampling of post-bariatric surgical patients who voluntarily and anonymously were invited to an email or postal mailed survey. Results: A total of 128 respondents were included in the final sample. Bivariate correlations revealed significant associations between PPLI Summary score (r = .44, p < .001), sub-scales of Knowledge and Understanding (r = .57, p < .001) and Sense of Self (r = .35, p < .001) with the Autonomous Motivation Index. Linear regression analysis showed that the model significantly predicted the Autonomous Motivation Index F(2, 125) = 23.54, p < .001, adjusted R2 = .31. The Knowledge and Understanding score, which significantly contributed to the model (p < .001), increased by one unit and the Autonomous Motivation Index score increased by 1.37. No significant correlations were found between age, motivation, or perceived physical literacy (p > .05). This suggested that perceived physical literacy (PPL) may play a role in motivating post-bariatric surgical patients to engage in PA. Keywords: physical literacy, perceived physical literacy, motivation, physical activity (PA), bariatric surgery PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 3 Acknowledgments With the culmination of this doctoral dissertation, I acknowledge the remarkable individuals whose contributions have shaped its outcome and significance with profound gratitude and appreciation. First and foremost, my heartfelt gratitude goes to the esteemed members of my dissertation committee: Dr. Laura Santurri, Dr. Elizabeth Moore, and Dr. Carol KennedyArmbruster. Their expertise, guidance, and dedicated commitment have played a pivotal role in shaping my research trajectory. Through their scholarly input and resolute support, they elevated the quality and integrity of this dissertation. I am equally indebted to the leadership team of the Community Healthcare System for their backing and encouragement throughout my academic pursuit. Their endorsement and cooperation have been instrumental in the successful execution of this research, particularly in granting permission to utilize our patient population for this study. Their consistent support has been a testament to their dedication to advancing healthcare knowledge and improving patient care. Furthermore, I extend my appreciation to the dedicated staff of the Healthy 4 Life Department of Bariatrics, whose cooperation and support were crucial in promoting, distributing, and collecting data for this study. Their commitment and diligent assistance were invaluable in bringing this research to fruition. I am immensely grateful to the post-surgical bariatric patients who graciously shared their experiences, as their contributions formed the cornerstone of this study's success. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 4 In addition to the academic mentors and esteemed healthcare collaborators, I would like to express my sincere and heartfelt gratitude to my parents, Richard and Josephine Ban. Their unwavering belief in me and support throughout my academic journey have been immeasurable. Our cherished weekly Sunday morning coffee meetups, filled with attentive listening to my research journey, provided invaluable motivation and encouragement. I thank my husband, Jim, for his unwavering support, understanding, and patience. Amidst the rigors of this educational process, he was a dependable anchor, accommodating my late study nights and weekends devoted to my pursuit. His confidence in my capabilities has been an indispensable source of fortitude. Lastly, I want to express my deepest appreciation to my sons, Joe and Luke. Their unwavering love, understanding, inspiration, and encouragement have been the bedrock of my strength throughout this transformative journey. The faith they had in me and the sacrifices our family made to support my academic dream hold a special place in my heart. I am eternally grateful for their steadfast support and boundless love. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 5 Table of Contents Introduction ..................................................................................................................................... 8 Problem Statement .......................................................................................................................... 9 Purpose Statement ........................................................................................................................... 9 Research Questions ......................................................................................................................... 9 Objectives ..................................................................................................................................... 10 Significance of the Study .............................................................................................................. 10 Literature Review.......................................................................................................................... 11 Obesity .......................................................................................................................................... 11 Bariatric Surgery ........................................................................................................................... 12 Post-Bariatric Surgery Guidelines for Successful Weight Loss ........................................... 13 Physical Activity Versus. Structured Exercise ............................................................................. 15 Physical Literacy........................................................................................................................... 16 Motivation and Engaging in PA ................................................................................................... 18 Motivation and Age .............................................................................................................. 18 Self-Determination Theory ........................................................................................................... 19 Conclusion .................................................................................................................................... 21 Method .......................................................................................................................................... 21 Study Type and Design ................................................................................................................. 22 Participants .................................................................................................................................... 22 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 6 Data ............................................................................................................................................... 23 Demographic Independent Variables .................................................................................... 23 Additional Independent Variable .......................................................................................... 24 Outcome/Dependent Variable ............................................................................................... 24 Operationalized Variables ..................................................................................................... 24 Instruments .................................................................................................................................... 25 Perceived Physical Literacy Instrument................................................................................ 25 Situational Motivation Scale ................................................................................................. 26 Procedures ..................................................................................................................................... 27 Recruitment ........................................................................................................................... 28 Informed Consent.................................................................................................................. 28 Pre-data collection ................................................................................................................ 29 Data Collection ..................................................................................................................... 29 Data Management ................................................................................................................. 31 Incentive Gift Card Drawing ................................................................................................ 32 Statistical Analysis ........................................................................................................................ 33 Descriptive Statistics ............................................................................................................. 33 Inferential Statistical Tests .................................................................................................... 33 Results ........................................................................................................................................... 34 Discussion ..................................................................................................................................... 37 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 7 Limitations .................................................................................................................................... 41 Future Opportunities ..................................................................................................................... 42 Conclusions ................................................................................................................................... 43 References ..................................................................................................................................... 46 Table 1 Sample Demographics and Descriptive Statistics ........................................................... 70 Table 2 - Sample Demographics and Descriptive Statistics ......................................................... 72 Table 3 - Correlations between PPLI Summary Score and Sub-Scores and Autonomous Motivation Index ........................................................................................................................... 73 Table 4 - Correlations between PPLI Summary Scores and Sub Scores and Control Motivation Index ............................................................................................................................................. 74 Table 5 - Linear Regression Model Predicting Autonomous Motivation Index from Knowledge and Understanding and Sense of Self ........................................................................................... 75 Table 6 - Correlations between Age and Motivation Measures ................................................... 76 Table 7 - Correlations between Age and PPLI Summary Scores and Sub Scores ....................... 77 Appendix A ................................................................................................................................... 78 Appendix B ................................................................................................................................... 79 Appendix C ................................................................................................................................... 80 Appendix D ................................................................................................................................... 81 Appendix E ................................................................................................................................... 84 Appendix F.................................................................................................................................... 90 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 8 Introduction According to the World Obesity Atlas (2022), global obesity is on track to double, resulting in an estimated one billion individuals living with obesity by 2030. Obesity is a chronic, multi-factorial, relapsing, and progressive condition (Bray et al., 2017). The Centers for Disease Control and Prevention (CDC) (2022a) reported the highest level in its history, with approximately 42.4% of adults in the United States having obesity. Garvey et al. (2016) and Wolfe et al. (2016) report that the condition of obesity increases the risk of over 60 comorbidities, including type 2 diabetes, dyslipidemia, sleep apnea, hypertension, stroke, coronary heart disease, gallbladder disease, osteoarthritis, cancer and more. Bariatric surgery can lessen a patient's weight quickly and offer a significant opportunity to reduce or resolve many co-morbid conditions (Arminian et al., 2015; Buchwald et al., 2009; Chang et al., 2014). Nevertheless, bariatric surgery is a powerful tool, not an elixir, for weight loss. Patients must follow post-surgical guidelines for sustained weight loss, including a healthy diet and consistent physical activity (PA). According to the CDC (2022c), current PA guidelines consist of 150 minutes of moderate-intensity PA, 75 minutes of vigorous-intensity PA, or an equivalent combination of the two twice weekly. The current practice of prescribing a structured PA regime after bariatric surgery is suspect as it has not markedly increased patient adherence (Hood et al., 2016; Toussi et al., 2009; Welch et al., 2008). Research shows that physical literacy may be associated with consistent patterns of PA and thus improved overall health (Belanger et al., 2018; Cairney et al., 2019). Physical literacy is defined as motivation, confidence, physical competence, knowledge, and understanding of the importance of engaging in lifetime PA (Whitehead, 2010; Whitehead, 2019). Whitehead (2001; 2007; 2010) and Taplin (2019) argue that physical literacy is PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 9 foundational to being physically active, as it embodies participation in any PA, not just structured and prescribed activity. Physical literacy has emerged as a novel opportunity related to PA and health benefits (Whitehead, 2010; Belanger et al., 2018; Cairney et al., 2019; Jurbala, 2015) but has yet to be explored in the bariatric literature. Problem Statement Even though systematic reviews have shown that structured PA, referred to as exercise, has a positive relationship with increased weight loss after bariatric surgery (Jacobi et al., 2010; Livhits et al., 2010), a significant number of individuals do not engage in exercise post-surgery (Bond & King, 2014; Elkins et al., 2005; Toussi et al., 2009). Therefore, is the traditional practice of prescribing structured PA sessions using generalized guidelines not meeting the individual needs of today's bariatric patients? According to Whitehead (2019), exploring physical literacy may assist our understanding of engaging in PA with this population. Unfortunately, the bariatric literature does not mention physical literacy as an underlying concept of a physically active life post-bariatric surgery. This void is a problem and invites exploration into whether physical literacy is associated with a bariatric surgical patient's motivation to be physically active after surgery. Purpose Statement This study aims to explore if there is an association between physical literacy and motivation to be physically active in adults post-bariatric surgery and whether the motivation to engage in PA is associated with age. Research Questions To address the study purpose, the following research questions were answered. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 10 1. Is there an association between perceived physical literacy and motivation to engage in PA among post-bariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? 2. Is there an association between age and motivation to engage in PA among postbariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? 3. Is there an association between age and perceived physical literacy among postbariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? Objectives 1. To determine the relationship between perceived physical literacy, measured with the Perceived Physical Literacy Instrument (PPLI; Sum et al., 2018), and motivation to engage in PA, measured with the Situational Motivation Scale (SIMS; Guay et al., 2000; Standage et al., 2003). 2. To explore the association between age and motivation to engage in PA, as measured with the SIMS (Guay et al., 2000; Standage et al., 2003). 3. To explore the association between age and perceived physical literacy, as measured with the PPLI (Sum et al., 2018). Significance of the Study This study is essential for the bariatric discipline to learn about physical literacy and how it relates to a patients motivation to engage in PA after bariatric surgery. By exploring the relationship, this study offers new insights for bariatric professionals to update their current practice of disseminating prescriptive, structured, general exercise programs to all ages post- PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 11 surgery. In addition, this studys findings convey valuable information to bariatric surgical programs to embrace and nurture the domains of physical literacy as antecedents to increasing motives for engaging in a physically active lifestyle post-bariatric surgery while considering diverse age group motivators in this population. Literature Review Obesity Obesity is diagnosed based on body mass index (BMI), which is defined as when an individual's body weight is 20% or more above what is considered healthy for their height (Centers for Disease Control and Prevention [CDC], (2022b). Obesity is a domestic and global issue (CDC, 2022b). It contributes to over 60 co-morbid conditions like type 2 diabetes, dyslipidemia, sleep apnea, hypertension, coronary heart disease, stroke, and cancer (CDC, 2021). According to the CDC (2021), the prevalence of obesity in the United States (US) in 2017 was nearly 42%, an increase of more than 10% from the previous reported period. Additionally, in 2017, severe obesity (individuals with a BMI >40) nearly doubled, increasing to 9.2% from 4.7% (CDC, 2021). Economically, obesity challenges the US with an annual estimated cost of $344 billion (CDC, 2022a). At the individual level, those with obesity had nearly $2,000 more medical expenses than those with a healthy weight (CDC, 2022a). In addition, the Millikin Institute (2020) estimated $1.02 trillion in indirect obesity costs related to lost workdays (Lopez et al., 2020). When combining all expenses, obesity costs the US approximately 6.76% of the 2018 Gross Domestic Product (Lopez et al., 2020). Obesity is a complex, multi-factorial medical condition whose causations include genetic predisposition, increased unhealthy food consumption, increased technological advancements PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 12 that reduce daily movement, and decreased PA (Chooi et al., 2019; Diels et al., 2020; Grundy, 1998; Hawkes et al., 2015). The Harvard School of Public Health (2012) states that unhealthy food choices certainly contribute to an increased risk of obesity; however, the toxicity of the food environment poses a far greater risk. Additional research shows that genetics, hormones, and epigenetics play a significant role in developing obesity (Thaker, 2017). Finally, the CDC (2022a) acknowledges that in addition to unhealthy eating patterns, lack of PA, insufficient sleep, social determinants of health, and certain illnesses and medications can contribute to obesity. In summary, no simple solutions exist to assist individuals with unhealthy body weight (CDC, 2021). All segments of society, including but not limited to the food and beverage industry, local and national government, elementary, secondary, and higher-level educational institutions, and healthcare, need to work together toward a comprehensive, multidimensional, systems-based approach that offers sustainable results to reduce the threat of obesity to the public's health (Grundy, 1998; Lee et al., 2017). Although a successful sustainable, multisegment plan has yet to be unveiled, bariatric surgery remains a viable solution (Arterburn et al., 2020; Rognoni et al., 2020). Bariatric Surgery Compared to non-surgical options for obesity, bariatric surgery results in significant and sustained weight loss and reduced related comorbidities if post-surgical guidelines are adhered to (American Society for Metabolic and Bariatric Surgery [ASMBS], 2019; Colquitt et al., 2014). According to the ASMBS (n.d.), individuals with a BMI > 40, over 100 pounds overweight, or a BMI > 35 with at least one or more comorbidities related to obesity and who have been unsuccessful at previous weight loss attempts may qualify for bariatric surgery. In addition, Angrisani et al. (2015) examined data from the International Federation for the Surgery of PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 13 Obesity and Metabolic Diseases and found that bariatric surgery has increased globally. The same holds domestically, with a nearly 100,000 increase in these surgical procedures from 20112019 (Estimate of Bariatric Surgery Numbers, 2021). Bariatric surgery, as with any surgery, may cause safety concerns (Arterburn et al., 2020). Anastomotic leaks, hernias, bleeding, ulcers, and even death are possible (Chang et al., 2014; Lim et al., 2018). However, current bariatric procedures use modern surgical techniques, reducing complication risk and demonstrating safety and efficacy (Aminian et al., 2014; Arterburn et al., 2020; Lim et al., 2018; Pomp, 2014). Since the early 2000s, bariatric surgery's estimated range of mortality rates has been between .03% to .20%. (Arterburn et al., 2020). Bockelman et al. (2017) used hazard ratio comparisons for bariatric surgery, cholecystectomy, knee arthroplasty, and colorectal resection in their nationwide study. They found that mortality rates after bariatric surgery were surprisingly lower than those of all other elective surgeries. Despite low complication risk and mortality, bariatric surgery without significant lifestyle changes can result in modest weight loss results, at best (Campos et al., 2020; Richardson et al., 2009). Post-Bariatric Surgery Guidelines for Successful Weight Loss According to Hood et al. (2018), significant and comprehensive lifestyle behavioral modifications are required for long-term weight loss sustainability after bariatric surgery. Therefore, in addition to regular follow-ups and attendance at monthly support groups (ASMBS, 2022), dietary changes and consistent PA are essential (Correia et al., 2019; Petridou et al., 2019; Zabatiero et al., 2015) for continued lifestyle changes and long-term improvements. Typically, bariatric surgical patients are educated on the importance of drinking 64 ounces of non-sugary, non-caffeinated fluid daily, eating 60-100 grams of protein daily, avoiding high sugar and high- PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 14 fat foods, and taking vitamin/mineral supplements for best outcomes (ASMBS, 2022). Adhering to these dietary guidelines has been shown to correlate with increased weight loss after surgery (Mitchell et al., 2016). Furthermore, in addition to following strict nutritional guidelines after bariatric surgery, the ASMBS (2022) posits that formal exercise and daily PA are equally important. Regular daily exercise post-bariatric surgery is encouraged and strongly recommended (Hood et al., 2018; Mechanick, 2016). ASMBS guidelines assert that post-surgical patients complete an average of 30 minutes of moderate exercise daily (ASMBS, 2022; Mechanick, 2016; Tabesh et al., 2019). Studies reveal that bariatric surgical patients can receive an array of benefits from a structured, individualized exercise program after surgery (Bellicha et al., 2018; Coen et al., 2014; Daniels et al., 2017; Gil et al., 2021; Ren et al., 2018). For example, Gil et al. (2021) conducted a randomized controlled study with 80 post-bariatric surgical women. They measured the effects of a 6-month, three times per week, aerobic and resistance training program and found that the exercise group had better performance with both the timed-up-and-go (p = .05) and timed-stand test (p < .01) compared to the non-exercise group. Furthermore, the exercise group had greater absolute (p < .01) and relative (p < .01) strength in comparison to the nonexercise group. Bellicha et al. (2018) performed a systematic review examining 15 studies. They found that a structured exercise program after bariatric surgery improved fitness and enhanced weight and fat loss. Even with the positive results of these studies, there is contradictory evidence showing that the current prescriptive exercise program after bariatric surgery indeed results in patient non-adherence (Hood et al., 2016; Welch et al., 2008). An exploration into general, unstructured PA may be warranted if a lack of adherence to a structured exercise program is evidenced. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 15 Physical Activity Versus. Structured Exercise Exercise is conceptually different from PA (Caspersen et al., 1985; CDC, 2017; Dasso, 2018; Gummelt, 2015). According to Caspersen et al. (1985), although exercise and PA result in energy expenditure, their features differ. Physical activity, like doing housework, gardening, or walking the dog, is the broader, overarching concept encompassing general bodily movement (CDC, 2017; Dasso, (2018). In contrast, structured exercise, like lifting weights, running on a treadmill, or walking in a 5K race, is a planned, structured, repetitive, and purposive activity (CDC, 2017; Dasso, 2018). Until recently, these two terms have been used interchangeably despite their significant differences (Caspersen et al., 1985; CDC, 2017; Dasso, 2018; Gummelt, 2015). Traditionally, exercise research focuses on achieving fitness and body composition goals, like improving cardiovascular efficiency, increasing strength, and enhancing lean tissue. Indeed, research shows that structured exercise delivers substantial benefits (Astrand, 1988; Blair, 1992; Blair et al., 1989; Blair et al., 2004; Manini, 2015; Morris & Heady, 1953; Paffenbarger et al., 1986; Thompson et al., 2001). Typically, exercise is prescribed according to industry guidelines, which state that individuals aged 18-65 should engage in a minimum of 150 minutes per week of moderate aerobic exercise or a minimum of 60 minutes per week of vigorous activity (Ligouri & ACSM, 2022). These structured, prescriptive exercise plans improve fitness and body composition (Amaro-Gahete et al., 2019; Blair et al., 2004; Branch et al., 2000). However, recent attention has pivoted to the overall health and well-being benefits of unstructured PA (Dasso, 2018), which is the focus of this study. Engaging in daily movement as opposed to traditional exercise bouts is beneficial, especially for functional fitness training (Astrand, 1992), and should be considered for overall health improvements (Jakicic et al., 2019). Importantly, Jakicic et al. (2019) reviewed 29 cross-sectional studies investigating whether < 10 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 16 minutes of PA bouts resulted in health benefits. They found that < 10-minute bouts of PA were associated with positive health outcomes (Jakicic et al., 2019). Research shows that the post-surgical bariatric population struggles with adherence to formal exercise (Hood et al., 2016; Welch et al., 2008), yet these patients continue to be prescribed structured exercise programs after bariatric surgery (ASMBS, 2022; Mechanick, 2016; Tabesh et al., 2019). Structured exercise program research touts the benefits of prescriptive exercise in the post-bariatric surgical population and purely focuses on physical parameters like weight loss and fat mass loss (Bellicha et al., 2018; Coen et al., 2014; Gil et al., 2021; Ren et al., 2018). However, since the evidence supports health improvements with less than the current industry exercise duration guideline (Jakicic et al., 2019), bariatric patients who struggle with adherence to formal exercise may do well if healthcare providers shifted the paradigm and promoted < 10-minute bouts of PA like playing with the dog, sweeping the floor, or walking a flight of stairs (Jakicic et al., 2019). Interestingly, many studies ignore unstructured PA as a part of everyday living, which is crucial and related to a concept called physical literacy (Whitehead, 2001; 2007; 2010; 2019). Physical Literacy Whitehead defines physical literacy as a multidimensional concept with holistic underpinnings defined as "the motivation, confidence, physical competence, knowledge and understanding to value and take responsibility for engaging in PA for life (2019, p. 8)". In addition, Cairney et al. (2019) argue that physical literacy offers a robust and rich lens to examine PA and its function in health promotion. However, most of the physical literacy research has targeted youth (Belanger et al., 2018; Jefferies et al., 2019), adolescents (Liu & Chen, 2020), and, most recently, older adults (Huang et al., 2020; Roetert & Ortega, 2019). PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 17 Sadly, the concept of physical literacy has yet to be studied in the adult (18-65 years of age) healthcare ecosystem with the post-surgical bariatric population. In 2020, Cornish et al. conducted a comprehensive literature review regarding physical literacy and identified 17 articles for inclusion. Although there was no perfect consensus on the definition of physical literacy, 94% of the articles identified by Cornish et al. (2020) used the physical literacy definition proposed by Whitehead (2001; 2007; 2010; 2019). In addition, Cornish et al. (2020) confirmed that much of the physical literacy research had been done in the youth and adolescent sector, focusing on the physical domain (Cairney et al., 2019). Furthermore, studies have yet to be conducted in the healthcare sector with adults despite evidence of physical literacy's connection to improved health (Cairney et al., 2019). Nonetheless, Holler et al. (2019) conducted a first-of-its-kind, non-randomized adult study with an intervention group of 30 physically inactive females and a matched control group of 30 physically inactive females. The intervention consisted of a once-weekly low-dose exercise session, for a total of 15 weeks, with the novel addition of a physical literacy element that proved to be promising (Holler et al., 2019). Holler et al. (2019) found that the intervention groups physical literacy score improvement was statistically significant (p < .001) with a large effect size (p2 = 0.21). Due to shortcomings with their physical literacy measurement instrument and the inability to focus on recruitment solely within the primary healthcare area, Holler et al. (2021) conducted a second, comparable non-randomized study. Similar to their first study, Holler et al. (2021) found statistically significant physical literacy improvements among physically inactive adults (p < .001, p2 = 0.29). However, this study identified a few limitations, including a convenience sample and a small sample size (Holler et al., 2021). PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 18 As evidenced by the literature, a gap exists in exploring the relationship between physical literacy and PA in the post-bariatric surgical adult (ages 18-65 years) population. Additionally, understanding if an individual's age is related to motivation and whether age and motivation are associated with engaging in PA would benefit bariatric healthcare providers. Lastly, this information would provide valuable insight into developing suitable approaches for working with the post-bariatric surgical population and their engagement in lifelong PA. Motivation and Engaging in PA Motivation is defined as the drive or desire to perform or participate in a particular behavior (Baumeister, 2016) and is a vital element that contributes to an individual's PA engagement (Schwarzer et al., 2011; Quested et al., 2021; Rhodes et al., 2017). In addition, studies have shown that motivation is likely to predict if individuals will participate in PA (Bond et al., 2014; Schwarzer et al., 2011). For example, the Bari-Active study (Bond et al., 2016) explored pre-bariatric surgery vs. post-bariatric surgery PA and identified that additional research is needed to pinpoint contributors, such as motivation, that may be related to participation in PA with bariatric surgical patients. Furthermore, Palmer et al. (2020) conducted a concept analysis to explore the relationship between motivation and PA by examining 68 fulltext articles in the adolescent sector. They found that autonomous motivation is essential in developing PA interventions and should be considered for further study. Motivation and Age Age and motivation have been found to be related (Nikitin et al., 2014; Steltenpohl et al., 2019; Stults-Kolehmainen et al., 2013). Nikitin et al. (2014) examined age and motivation and examined avoidance motivation and social situations with 55 male and female younger adults (M = 23.67 years) and 58 male and female older adults (M = 71.44). Using repeated-measures PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 19 analysis of variance (ANOVA), Nikitin et al. (2014) reported a statistically significant difference in avoidance motivation between younger and older adults, t(109) = -3.81, p < 001, d = .73, concluding that age is an essential variable in predicting motivation. In a qualitative study by Steltenpohl et al. (2019), the Socioemotional Selectivity Theory (Lockenhoff & Carstensen, 2004) framework was used to verify shifts in exercise motivation depending on age. Their focus group research examined age differences related to exercise motivation and found that age was related to motivation. Thus, they recommended that health professionals integrate age-specific messaging to enhance exercise at various stages of life. Additionally, in their study with highly active individuals, Stults-Kolehmainen et al. (2013) argued that many motives contribute to exercise engagement. Importantly, their research identified that an individual's motivational 'profile' differs depending on age. Stults-Kolehmainen et al. (2013) recommend that future studies investigate this concept within a theoretical framework like the Self-Determination Theory (SDT) developed by Deci & Ryan (1985). Self-Determination Theory While examining the relationship between physical literacy and PA in the post-bariatric surgical population, it is vital to understand an individuals underlying motivations and other determinants that contribute to adopting a physically active lifestyle after surgery. SDT is a human motivation theory proposing that human behavior is driven to meet the basic needs of competence, autonomy, and relatedness (Deci & Ryan, 2014; Ryan & Deci, 2000). The literature offers evidence to support the efficacy of interventions based on the SDT and PA in both the bariatric surgical and non-surgical populations (Edmunds et al., 2008; Teixeira et al., 2012; Wilson et al., 2006). PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 20 In the non-bariatric surgical sector, Coumans et al. (2022) conducted a cross-sectional study of 1,142 adults using two questionnaires, the Behavioural Regulation in Exercise Questionnaire (BREQ-2) and the Treatment Self-Regulation Questionnaire (TSRQ), to measure motivation for PA and diet based on SDT. They found that self-determined forms of motivation for lifestyle domain-specific activities are relevant for forecasting sub-behaviors (Coumans et al., 2022). Furthermore, Mancini (2008) reminds us that program approaches can significantly influence motivation in his work in the mental health realm with patient recovery. For example, programs that do not consider the patient's independent behaviors and interests but instead focus on a dictatorial or commanding approach can negatively affect motivation (Mancini, 2008). Additionally, Ostendorf et al. (2021) studied the relationship between motivational profiles of overweight or obese adults and changes in their PA during an 18-month behavioral weight loss program which included supervised exercise for six months followed by an unsupervised exercise program for six months (Ostendorf et al., 2021). Similarly, they found that intrinsically motivated adults appeared to sustain PA after removing the supervision, offering additional alignment with SDT (Ostendorf et al., 2021). In the bariatric surgical population, Jimenez-Loaisa et al. (2020) and Gonzalez-Cutre et al. (2018) conducted studies where exercise programs were built using SDT. As a result, Jimenez-Loaisa et al. (2020) identified that exercise intervention based on SDT improved bariatric patients' reported quality of life post-surgery. Furthermore, using a qualitative methodology, Gonzalez-Cutre et al. (2018) found positive themed outcomes in the bariatric surgical patient population participating in SDT-based exercise programs. Finally, Anderson & Chacko (2018) worked with post-bariatric surgical patients and implemented a holistic self- PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 21 management program based on SDT. This SDT-based intervention emboldened autonomy, consistent with intrinsic motivation (Hagger et al., 2014). While SDT literature is robust and offers insight into its contribution to PA, limited studies have focused on its relationship to physical literacy. A study with college students identified a reciprocal association between SDTs psychological needs satisfaction and physical literacy (Wang et al., 2020). McClelland (2013) studied children in 4th-6th grade and found a propensity towards engaging in PA shaped by needs satisfaction which is an element of SDT. Lastly, Chen (2015) described how a physically literate individual must have intrinsic motivation, stemming from SDT constructs (Ryan & Deci, 2000), to be physically active. As evidenced above, some peer-reviewed studies have used SDT to examine physical literacy and PA in youth, adolescent, and college populations. However, no studies have used an SDT lens with the post-surgical adult (18-65 years of age) bariatric population. Studying this population's relationship between perceived physical literacy, age, and motivation to engage in PA will contribute to the contemporary literature on the post-bariatric standard of care. Conclusion Although bariatric surgery offers metabolic and anatomical changes for substantial weight loss, it is not a panacea. It requires a consistent and sustained focus on healthy lifestyle choices, such as lifelong PA and incorporating movement into everyday living practices. In addition, the multidimensional concept of physical literacy is void from the bariatric surgical literature. Therefore, the opportunity exists to examine whether physical literacy is correlated with an individual's motivation, a construct of SDT, and whether age is associated with a postbariatric surgical patients motivation to participate in PA. Method PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 22 Study Type and Design This quantitative, non-experimental study used a cross-sectional design. This single-stage survey study also used a homogeneous, convenience, non-random sampling of post-bariatric surgical patients in Northwestern Indiana. The study did not involve direct patient contact, as it was designed as primarily an email survey using Qualtrics survey software, with some postal mailed surveys for patients who did not have an email address. The study ran from January 2023 to March 2023. The appropriate institutional review board approvals were secured before the study was released. Participants Post-surgical bariatric patient populations of two hospital-based clinics in Northwestern Indiana served as the population of interest for this study. To be included in this study, patients needed to be between 18 and 65 years old. In addition, they had a verified EPIC electronic medical record (EMR) identifying that either a Roux-en-Y Gastric Bypass or a Vertical Sleeve Gastrectomy surgery was completed at either St. Mary Medical Center in Hobart, Indiana, or Community Hospital in Munster, Indiana, since 2016. In addition, study participants needed an accurate email address or physical address extracted from the EPIC electronic medical record to deliver the study questionnaire. Male and female patients who had other bariatric surgeries, such as the lap band, were excluded from the study since the lap band does not permanently amend the anatomical structure of the gastrointestinal area, nor is categorized as a permanent metabolic surgical procedure. An initial query of the ICD-10 codes for Roux-en-Y Gastric Bypass and Vertical Sleeve Gastrectomy in the EMR at the two Northwestern Indiana hospitals estimated that approximately 1,050 patients had had these surgeries since 2016. An a priori sample size calculation using PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 23 G*Power, version 3.1 (Faul et al., 2009) was conducted based on using a bivariate correlation two-tailed test and the following parameters: alpha of .05, power of .80, and an effect size of .30. The calculation resulted in a minimum sample size of 84. Data Self-reported data included the following: Demographic Independent Variables Geographic region: whether the subject resided in Northwestern Indiana (Lake, Porter, Jasper, Newton, LaPorte counties): (a) Yes or (b) No Perceived level of safety within the residential community (i.e., how well the community was protected from dangerous situations): (a) Very safe or (b) Somewhat safe or (c) Somewhat unsafe or (d) Very unsafe Perceived access to recreational areas for physical activities like walking (i.e., trails, sidewalks, malls, parks, etc.), playing, hiking, swimming, biking, etc.: (a) Very good access (b) Good access (c) Somewhat good access (d) Somewhat poor access (e) Poor access (f) Very poor access Age in years Gender: (a) Female or (b) Male or (c) Other Race: (a) Asian or (b) African American/Black or (c) Caucasian/White or (d) Latino/Hispanic or (e) Pacific Islander/Native Hawaiian or (f) Native American or (g) Other Type of bariatric surgery: (a) Gastric (Roux-en-Y) Bypass or (b) Vertical Sleeve Gastrectomy Years since bariatric surgery PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 24 Level of education: (a) Eighth grade or less (b) Some high school (c) High school graduate or GED (d) Some college (e) College graduate or (f) Graduate/Professional degree Marital status: (a) Married or (b) Divorced or (d) Widowed or (e) Single, never married Additional Independent Variable Perceived physical literacy Outcome/Dependent Variable Motivation to engage in PA Operationalized Variables According to the International Physical Literacy Association (n.d.), physical literacy is "the motivation, confidence, physical competence, knowledge, and understanding to value and take responsibility for engagement in physical activities for life" (n.d.). Physical literacy was operationalized by summing the total and related sub-scale scores from the Perceived Physical Literacy Instrument (PPLI). Deci and Ryan (1985) define motivation as fundamental to their SDT. They state that autonomy, competence, and relatedness are foundational to understanding one's self-determined motivation, which is categorized into intrinsic (coming from within), extrinsic (external regulation), defined as coming from outside or identified regulation defined as "the most autonomous form of extrinsic motivation" (Ryan & Deci, 2000, pp. 7273) or amotivation (absence of motivation). Situational motivation is the motivation an individual experiences in the here and now (Vallerand, 1997; Vallerand & Ratelle, 2002). Intrinsic and extrinsic motivation PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 25 were operationalized as the sub-scale scores derived from the Autonomous Motivation Index and Controlled Motivation Index obtained from the SIMS. Instruments Perceived Physical Literacy Instrument Approval was obtained for the PPLI (Appendix A). The PPLI measured perceived physical literacy (Sum et al., 2016). The PPLI originally contained 18 items; however, after both exploratory and confirmatory factor analyses were conducted, the instrument was modified to contain a 9-item, 3-factor sub-scale (Sum et al., 2016). Therefore, the PPLI used for this study was the 9-item, three-factor assessment tool with three items per subscale factor (Appendix B). The three identified subscale factors are knowledge and understanding, self-expression and communication with others, and a sense of self and self-confidence. The instrument used a 5point Likert scale (1 = strongly disagree to 5 = strongly agree). Values from all nine items were totaled, with the overall score ranging from 9 to 45. In addition, scores for each of the three subscales were also totaled, with scores ranging from 3 to 15. For the overall and subscale scores, higher scores indicated greater overall perceived physical literacy. Researchers developed this instrument, administered it to 336 physical education professionals in Hong Kong, and proved that it has construct validity with good validity and reliability. Analyses showed internal consistency reliability, with a Cronbach's alpha from .73 to .76 and exploratory factor analysis from .69 to .87, demonstrating construct validity (Sum et al., 2016). A good fit for the model was supported by confirmatory factor analysis (Mohamad et al., 2020). Although no information was provided regarding test-retest reliability, convergent validity, or discriminant validity, Mohamad et al. (2020) found the PPLI reliable and valid for measuring perceived physical literacy. Furthermore, the PPLI was initially used with physical PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 26 education professionals, yet Mohamad et al. (2020) argued that it could also be used in medical and health settings. Confirmatory factor analysis was used to determine subscale validity. To determine the goodness of fit for all the subscale models, Sum et al. (2016) found that 33% of the residuals were greater than .05, and all subscales had a Cronbachs alpha > .70, indicating internal consistency. Situational Motivation Scale The SIMS was also approved for use (Appendix A). It is a multidimensional instrument (Appendix C) used to assess intrinsic motivation, identified regulation, external regulation, and amotivation at the situational level (Guay et al., 2000). The SIMS is a 16-item instrument (Guay et al., 2000) used to measure situational motivation in numerous studies within various PA situations (Kowal & Fortier, 2000; Standage et al., 1999; Standage & Treasure, 2002). The SIMS questionnaire offered a 7-point Likert scale for participant responses, including 1-corresponds, not at all; 2-corresponds a very little; 3-corresponds a little; 4corresponds moderately; 5corresponds enough, 6-corresponds a lot; and 7-corresponds exactly. The SIMS identified four subscales: intrinsic motivation, identified regulation, external regulation, and amotivation. The scores from the four subscales were totaled and then divided by the number of questions (Guay et al., 2000). The higher the score, the greater the motivation (Guay et al., 2000). The SIMS identified an Autonomous Motivation Index, calculated by adding and averaging the intrinsic motivation and identified regulation scores. A Controlled Motivation Index was calculated by adding and averaging the external regulation and amotivation scores. Five studies, with collectively over 1000 French Canadian college students, were conducted in the original research (Guay et al., 2000). Although the original research used college students, Clancy et al. (2017) found that the SIMS instrument could be used in most PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 27 settings. Exploratory factor analysis (EFA) was done to determine internal reliability. EFA identified the four subscales and verified that intrinsic motivation, identified regulation, external regulation, and amotivation could be assessed with this instrument. (Guay et al., 2000) Cronbach's alpha values for the four subscales were as follows: intrinsic motivation = .95; identified regulation = .85; external regulation = .62; and amotivation = .83). Clancy et al. (2017) found the SIMS to have adequate test-retest reliability. Several studies identified that the content, factorial, predictive validity, and reliability of the SIMS scores exist and have a good model fit (Blanchard et al., 2007; Clancy et al., 2017; Gillet et al., 2012; Guay et al., 2000; Standage et al., 2003). Procedures Initially, all bariatric surgical patient lists at the two Northwestern Indiana hospitals were cross-checked by the bariatric clinic manager to verify ICD-10 surgical codes for Roux-en-Y Gastric Bypass or Vertical Sleeve Gastrectomy and patients ages 18-65 were identified as qualified study participants. After identifying the qualified study participants, the primary researcher manually reviewed all the patients' EMRs to confirm they met the age, type of bariatric surgery, and time since bariatric surgery criteria. Excluded patient information, including the reason for exclusion, was logged and totaled by the researcher. Additionally, the researcher extracted emails from the EMR and cross-referenced them with the Marketing department's bariatric patient database. Patient information was permanently deleted from all electronic files if they did not meet the inclusion criteria. Patient information was de-identified and kept in password-protected files housed in Community Healthcare System computers, protected by extensive firewalls and multiple servers. In addition, the Corporate Compliance Officer of the Community Healthcare System, where the patient data was stored, served as the PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 28 expert in overseeing risks of patient identification with the set of health information data collected in this study. Recruitment This study used the following strategies, suggested by Pit et al. (2014) for successful recruitment: 1. Support of the two hospitals within the healthcare system from the President/CEO, Medical Director of the Department of Bariatrics, and Bariatric Surgeons of the Department of Bariatrics was secured (Appendix D). 2. Postcard, email, newsletter, and office signage was used to pre-notify bariatric surgical patients about the study. 3. Bariatric surgical patient emails and physical addresses were verified as current and up to date by cross-referencing the EMR with the marketing department's CRM database. 4. The Medical Director emailed and postal mailed a letter of invitation to participate in the study. Subsequently, actual invitations to participate were emailed and postal mailed during the data collection phase of the study. Informed Consent According to the Revised Common Rule (2017), an institutional review board needed to confirm the need for informed consent since this study involved human subjects and the extraction of personal health information occurred from an EMR (Manti & Licari, 2018). Therefore, the participant's informed consent was collected electronically for the survey. On the first page of the survey, participants agreed to participate in the study by clicking the agreement PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 29 button. Individuals who did not agree to participate in the study were taken to the end of the survey. For the postal mailed surveys, the face page of the survey contained the consent information and a statement indicating that by answering and returning the survey, the participant was providing their consent. If they desired to be included in the incentive gift card drawing, a gift card drawing ticket needed to be completed and returned with their survey in a pre-printed, pre-paid envelope with no return address requested (Appendix E). Pre-data collection The Hospitals EMR (EPIC) was queried to identify all bariatric surgical patients. Participant name, email address, and mailing address were extracted and provided to the primary researcher in a password-protected Excel file in the healthcare system's secured server. The primary researcher manually screened the Excel patient data file to identify those who met the inclusion criteria. Patients excluded from the study were deleted from the eligible list, and their emails were placed into a study exclusion file for future reference. Once potential participants were identified and determined to be eligible for the study, a pre-survey letter of support and invitation to participate from the Medical Director of Bariatric Services was sent approximately two to three weeks before releasing the survey. This invitation included information regarding an optional incentive gift card drawing for patients who completed the survey. Data Collection Data collection was done at the Community Healthcare System in a closed office to protect the privacy and confidentiality of the respondents. A Community Healthcare System registration representative within the Department of Bariatric Services sent all invitation emails PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 30 and postal mail to the approximately 1,050 post-bariatric surgical patients. For the email surveys, a link and QR code to a Qualtrics survey (Appendix E) was embedded in a HIPAA-compliant Constant Contact message and emailed from a unique healthcare system email address that had end-to-end encryption and was reserved for this study. In addition, the Constant Contact account was set up to release up to three subsequent email reminders for individuals who still needed to open their initial emails. The header in the follow-up emails reiterated the gift card drawing prize incentive and presented the immediacy for a call to action. The registration representative tracked the response rate in a password-protected Community Healthcare System Sharepoint document for the researcher to review daily. After three days of unopened initial email identification, a second reminder email was released. A third reminder email was sent after seven days of unopened initial email identification. Two weeks after the survey was emailed, an unopened email list and any emails returned undeliverable were generated. Postal mailing addresses were extracted from EPIC, and surveys were postal mailed to patients who still needed to open their emails or did not have an email in the EMR. The postal mail survey was sent via the United States Postal Service. The mailed envelope contained the letter of invitation, statement of informed consent, printed survey, gift card drawing ticket, and postage-paid return envelope with the Department of Bariatrics address as the return address. A final email was sent approximately three weeks after the initial email. It included a thank you to those who completed the survey, a reminder about the incentive gift card drawing, and a reiteration of the survey closing date. The following strategies were implemented to ensure survey respondents did not take the survey multiple times or share the survey with others, as well as mitigated the risk of bot responses (Nesterak, 2019). First, the online Qualtrics survey was designed to set a cookie on the PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 31 respondent's browser when they submitted their response. If the respondent attempted to click on the survey more than once, Qualtrics identified the cookie and prohibited additional survey submissions. In addition, since the survey was sent from a unique email within the healthcare system, a one-time-use link was generated by Qualtrics for each participant, further reducing multiple submissions by the same respondent. Next, the mailed survey had a survey identifier located in a section entitled 'office use only,' preventing duplication and distribution of the survey to others than to whom the survey was intended. Finally, the mailed drawing ticket contained a proprietary logo watermark to reduce the risk of fraudulent duplication or distribution. Since the study response rate superseded the minimum sample size of 84, the researcher did not seek additional post-bariatric surgical patients via online sites like Reddit. Data Management Once the study closed, the primary researcher downloaded the data from Qualtrics into an Excel file. Data were cleaned, and instrument scores were calculated and analyzed using the raw data. Participant data was protected and conformed to all privacy and confidentiality regulations and laws (i.e., HIPAA). All participant emails were stored in a password-protected electronic Excel file and a password-protected Constant Contact healthcare system account. All participant response data downloaded from Qualtrics was de-identified and stored in a password-protected Excel file. The computers used for this study were password protected with a dual-authentication system (i.e., Imprivata). All returned surveys mailed via the United States Postal Service were received by the registration representative at the Department of Bariatrics, who handled all incoming department mail. The registration representative had access to a Sharepoint Excel file and was responsible PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 32 for uploading all returned survey response data into the file. The office lead oversaw the uploading of survey responses to ensure all data was entered correctly. All paper surveys were placed in a sealed envelope and were retained in the departments locked data collection drawer. Paper surveys were shredded at the end of this study. Only the office lead and hospital security had the master key for the locked data drawers. Incentive Gift Card Drawing An incentive gift card drawing was built into Qualtrics to increase survey participation. At the end of the online survey, a question asked the participants if they would like to enter the drawing to win a $10 Amazon e-gift card. If the respondent answered "no," they were thanked for participating, and the survey was terminated. If the respondent answered "yes," they were directed to the drawing page. Participants' names and contact information were collected on the gift card drawing page. Once the survey closed, the data from the drawing page was downloaded and exported into a second Excel file by the Department of Bariatrics registration representative and double-checked by the office lead. Participants line location in Excel served as their numerical drawing number. Twenty winning numbers were randomly selected using the www.random.org random number generator website. The drawing winners were notified via email, and a $10 digital Amazon e-gift card was attached to notify them of their winning. The primary researcher sent the winning participants the digital Amazon e-gift cards via the healthcare system's unique email address developed for this study. In addition, the email was set so the researcher received a read receipt. A master list of all gift card drawing winners, date of email notification, return read receipts of emails, and prize amounts were contained in an Excel file entitled "Online gift card drawing winners," PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 33 located on the Sharepoint drive, managed by the Department of Bariatrics registration representative, and overseen by the office lead. Since only one gift card drawing ticket (Appendix F) was returned in the pre-paid survey return envelope, the primary researcher contacted the winner via their contact information and mailed their $10 Amazon gift card via United States Postal Service certified mail, requesting a return receipt. Statistical Analysis Descriptive Statistics Descriptive statistics were used to describe the sample and report survey responses. Frequencies and percentages were reported for nominal data, and median and 25th and 75th percentiles were reported for ordinal and non-normally distributed interval and ratio data. In contrast, means and standard deviations were reported for normally distributed interval and ratio data. The normality of data was determined using the Shapiro-Wilk test and visualization of Q-Q plots and histograms. Data were analyzed using IBM SPSS Statistics for Windows, Version 28.0 (IBM Corp., Armonk, NY). All comparisons were two-tailed, and an alpha level less than .05 was considered statistically significant. Inferential Statistical Tests Bivariate correlations were conducted to determine if there was an association between motivation to engage in PA and perceived physical literacy and motivation to engage in PA and age. A scatter plot was used to determine whether a linear relationship existed, and a line of best fit was used to identify the strength of that relationship. Depending on the normality of the distribution, either the Pearson correlation or Spearman rho correlation was conducted. Based on the recommendations of Kraemer et al. (2003) and Kellar and Kelvan (2013), the Pearson PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 34 correlation and Spearman rho correlation coefficients were interpreted using the following scale: .1-.29 = small association; .30-.49 = medium association and .50 - .99 = large association. A linear regression analysis was completed to determine if perceived physical literacy and age, controlling for potential confounders, predict motivation to engage in PA. For regression results to be valid, several assumptions had to be met, including linearity, homoscedasticity of residuals, independence of observations, no multicollinearity, no significant outliers, and normally distributed residuals (Field, 2017). The assumptions were tested and interpreted based on the recommendations of Field (2017). Partial regression plots and a plot of studentized residuals against the unstandardized predicted values assessed linearity. Homoscedasticity was determined by visually examining a plot of studentized residuals against the unstandardized predicted values. A Durbin-Watson statistic assessed the independence of observations. If the value was between 0.80 and 3.20, then the assumption of independence of observations was met. No multicollinearity was determined using tolerance values and correlation coefficients between the independent variables. Tolerance values greater than 0.10 indicated no multicollinearity, as did correlation coefficients less than .85. No significant outliers were indicated if the standardized residuals value were with + 3 standard deviations. Normally distributed residuals were assessed through visual inspection of the histogram of standardized residuals and the probability plot (P-P plot). Results PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 35 A total of 147 individuals responded to the survey, with 146 completing the Qualtrics survey online via email and one respondent submitting a mail-in survey, which was manually added to the raw data. However, 19 responses were excluded from the study due to non-consent (n = 2) or survey incompletion (n = 17). Therefore, the final survey sample size included in the study was 128 respondents. Descriptive Statistics The sample consisted of 128 respondents, with a slight majority falling in the 45-49 age group (n = 29, 22.7%). The majority of participants were female (n = 115, 89.8%) and identified as Caucasian/White (n = 86, 67.2%), which aligns with previous bariatric surgical studies demographics (Chang et al., 2019; Courcoulas et al., 2018; DeMaria et al., 2010; Voorwinde et al., 2022). This indicates that the sample in this study is representative of the gender and ethnicity distribution within the post-bariatric surgical population. Most participants were married (n = 75, 58.6%) and resided in Northwestern Indiana (n = 111, 86.7%). Nearly all respondents had education beyond high school (n = 118, 92.2%). The time since surgery varied from less than one year to 6 years, with a relatively even distribution across the years. Finally, similar to bariatric surgery industry trends (English et al., 2020), the most common bariatric surgery procedure was Sleeve Gastrectomy (n = 86, 67.2%). Complete descriptive statistics are presented in Table 1. Table 2 shows the descriptive statistics for the PPLI and Motivation Index scores. Research Question 1 Is there an association between perceived physical literacy and motivation to engage in PA among post-bariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 36 Bivariate Correlations As shown in Table 3, absolute correlation coefficients ranged from .13 to .57. There were statistically significant correlations for the PPLI Summary score (r = .44, p < .001), Knowledge and Understanding sub-score (r = 57, p < .001), and Sense of Self sub-score (r = 35, p < .001) with the Autonomous Motivation Index. Therefore, these three variables were identified as potential predictors of the Autonomous Motivation Index since they met the pre-established inclusion criterion of the correlation coefficient being > .30. However, due to the strong correlation between the PPLI Summary score and the Knowledge and Understanding sub-score (r = .78) and the PPLI Summary score and Sense of Self sub-score (r = .86), there was a possibility of multicollinearity. Therefore, the PPLI Summary score was not entered into the model, and only Knowledge and Understanding, and Sense of Self sub-scores were used in the regression analysis. For the Control Motivation Index, correlations with the PPLI Summary score, Knowledge and Understanding sub-score, Self-Expression sub-score, and Sense of Self subscore did not reach the threshold for being included in the regression model. See Table 4. Therefore, linear regression analysis was not warranted. Linear Regression Linear regression was conducted with the dependent variable Autonomous Motivation Index and the independent variables Knowledge and Understanding and Sense of Self. All the assumptions of independent observations, normal distribution, linearity, and homoscedasticity were met. The model was statistically significant and predicted Autonomous Motivation Index, F(2, 125) = 23.54, p < .001, adjusted R2 = .31.Only Knowledge and Understanding added statistically significantly to the model (p < .001). As Knowledge and Understanding scores PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 37 increased, the Autonomous Motivation Index score increased by 1.37. Further information is presented in Table 5. Research Question 2 Is there an association between age and motivation to engage in PA among post-bariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? Bivariate Correlations As shown in Table 6, absolute correlation coefficients between age and the Autonomous Motivation Index and between age and Control Motivation Index ranged from .01 to .13; neither was statistically significant (p = .887 and p = .141, respectively). Therefore, regression analysis was not justified because neither of the correlation coefficients was greater than .30. Research Question 3 Is there an association between age and perceived physical literacy among post-bariatric surgical adult patients aged 18-65 who had surgery at one of two Northwestern Indiana hospitals within the last six years? Bivariate Correlations Table 7 shows absolute correlation coefficients ranging from .03 to .12 when examining Age against PPLI Summary scores, Knowledge and Understanding, Self-Expression, and Sense of Self sub-scores. In addition, none of the correlations were statistically significant (p = .312, p = .173, p = .720, p = .502, respectively). Therefore, regression analysis was not warranted since all the correlation coefficients were less than .30. Discussion PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 38 This study explored the association between perceived physical literacy and motivation to engage in PA among adult post-bariatric surgical patients (18-65 years) in Northwestern Indiana. Additionally, the study examined the relationship between age and motivation to participate in PA among these patients. The findings of this study have implications for healthcare practitioners and patients, offering valuable insights to improve healthcare strategies and program outcomes for bariatric patients. The study employed the Self-Determination Theory (SDT) as a theoretical framework developed by Deci and Ryan (1985), distinguishing between two primary motivation types: intrinsic and extrinsic. The researcher utilized the Autonomous Motivation Index of the SIMS survey instrument (Guay et al., 2000) to represent intrinsic motivation and the Control Motivation Index of the same instrument to represent extrinsic motivation. Although this study found no relationship between control motivation (extrinsic motivation), and any of the physical literacy subscales, the physical literacy sub-scale of Knowledge and Understanding did demonstrate a positive association of .31 with the Autonomous Motivation Index (intrinsic motivation). This finding suggests that individuals with a higher level of knowledge and understanding regarding general PA may exhibit an increased internal motivation to engage in PA. Furthermore, knowledge and understanding of physical literacy may equip individuals with information about the positive impact of PA on improved health and overall quality of life. When individuals are aware of these benefits, it is plausible that they are more inclined to be internally motivated to participate in PA to attain these favorable outcomes. The study's findings reveal a positive relationship between the physical literacy subscale of Knowledge and Understanding and the Autonomous Motivation Index. Specifically, as individuals' scores on the Knowledge and Understanding subscale increased, the Autonomous PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 39 Motivation Index score increased by 1.37. This suggests that individuals with a higher level of knowledge and understanding about PA may exhibit a greater intrinsic motivation to participate in physical activities. This result implies that having a more profound comprehension of physical literacy may contribute to a more substantial internal drive and motivation to engage in PA. It highlights the importance of providing individuals with comprehensive information and education regarding physical literacy, as it can positively influence their intrinsic motivation and, subsequently, their overall engagement in PA after bariatric surgery. These study findings support Cairney et al.'s (2019) assertion that physical literacy is valuable when exploring PAs role in promoting health and well-being. While previous research has suggested the benefits of physical literacy initiatives as being viable, they targeted demographics such as youth (Belanger et al., 2018; Jefferies et al., 2019), adolescents (Liu & Chen, 2020), and older adults (Huang et al., 2020; Roetert & Ortega, 2019). This study's results suggest that physical literacy could be vital to the adult bariatric surgical patient program. Although research indicates age and motivation are correlated (Nikitin et al., 2014; Steltenpohl et al.; Stults-Kolehmainen et al., 2013), this studys outcomes found no significant associations between age and motivation or age and physical literacy in the adult post-bariatric surgical population. It is worth noting that Stults-Kolehmainen et al. (2013) conducted a study involving more than 2,000 individuals aged 18 to 64 who were not post-bariatric surgical patients with obesity and argued that different age-related motivational profiles contribute to exercise engagement. While Stults-Kolehmainen et al.'s (2013) findings shed light on various age-related motivational profiles that contribute to engaging in formal exercise, it remains to be seen how these age-related profiles relate to the population in this study. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 40 In contrast to the Stults-Kolehmainen et al. (2013) research, others support the finding of this study, stating that age is not a significant predictor of PA (Bergh et al., 2017) after bariatric surgery. In the Bergh et al. (2017) study, 112 participants wore an ActiGraph accelerometer for seven consecutive days, 18-24 months after bariatric surgery. In addition, they answered a questionnaire for the researchers to gather information regarding self-regulatory predictors of PA after bariatric surgery, which found that age was not a significant predictor of PA. Subsequently, when exploring age and physical literacy, this study found no statistically significant correlation in the post-bariatric surgical population in Northwestern Indiana. This studys results contradict others that found physical literacy levels may decline with age (e.g., Huang et al., 2020; Roetert & Ortega, 2019). Some possible reasons why this study did not find a statistically significant correlation are as follows. First, the patients in this study may have had similar physical literacy levels across different age groups, resulting in a lack of significant variation to detect a correlation. Next, there might have been other factors influencing physical literacy in this particular demographic that overshadowed the potential impact of age. For example, the participants' previous experiences, motivations, or access to resources and support for PA could have substantially influenced their physical literacy levels more than their age alone. Finally, there could have been differences in this study's methodologies or assessment instrument selection to assess physical literacy compared to other studies. Further research with more diverse samples may better understand the relationship between age and physical literacy in post-bariatric surgical populations. This study highlights the need for bariatric department healthcare providers to prioritize physical literacy as a fundamental and integral component of the bariatric surgical patient's journey. The results underscore the importance of physical literacy initiatives in a comprehensive PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 41 care approach for these patients. In addition, the results of this study suggest that healthcare providers consider taking steps to equip bariatric surgical patients with the knowledge, skills, and sense of self required to maintain a healthy and active lifestyle following bariatric surgery. While a formal, prescriptive, and structured exercise program is effective and has its place in the post-bariatric surgery sector (Bellicha et al., 2018; Coen et al., 2014; Daniels et al., 2017; Gil et al., 2021; Ren et al., 2018), it is crucial to shift the focus towards ensuring that this population understands the significance of their activities outside of formal exercise. Specifically, paying attention to daily PA and movement and decreasing the time spent sitting or being inactive represents the missing link that needs attention (Dempsey et al., 2020; Dunstan et al., 2021; Hwang et al., 2022; Tremblay et al., 2007). Ultimately, incorporating a physical literacy program into the bariatric surgical patient's care plan may fill a gap, leading to improved participation in PA throughout the lifespan. Limitations The main limitation of this study was the lack of a control group population, which could have significantly compromised the research design (Campbell & Stanley, 1963; Polit & Beck, 2020). The lack of a control group hindered the ability to establish a basis for comparison or a reference point to assess the impact of the variables investigated. Consequently, this study could not establish causal relationships and was limited to reporting correlations. In addition, the absence of a control group compromised the study's internal validity and the findings' generalizability (Campbell & Stanley, 1963; Polit & Beck, 2020), which could have significantly compromised the research design (Campbell & Stanley, 1963; Polit & Beck, 2020). Therefore, the study's conclusions are likely weakened by the absence of a control group, limiting the robustness of the insights derived from this research. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 42 Additionally, four other limitations were noted. First, this study may have had a bias, as it used a non-randomized control design, which could have affected the validity of the results (Creswell, 2014; Polit & Beck, 2020). In addition, non-response bias was another limitation of this study, as eighty-six percent of the invited patients did not participate in this survey. Second, this study relied on self-reported data, which may have contributed to response and social desirability biases (Gaskin & Happell, 2014). As a result, instead of offering accurate, honest responses, participants may have selected responses they felt were expected or socially acceptable. Additionally, participants may have felt pressured to represent themselves in a positive light to conform to department or industry post-surgical expectations. Third, this studys low email response rate was concerning. Previous studies have found that a 20-30% response rate is acceptable for email surveys (Kaplowitz et al., 2004; Kongsved et al., 2007; Shih et al., 2013). However, in this study, the response rate was only 14%. Lastly, the study investigated various confounding variables yet found no statistically significant relationships among the variables examined. However, it is essential to consider the potential presence of additional confounding variables that were not explored, which could have introduced bias into the study (VanderWeele & Shipitser, 2013). Furthermore, exploring additional confounders such as socioeconomic status, comorbidities, employment status, body mass index, PA level before bariatric surgery, and depression may be worth considering. Future Opportunities The findings of this study offer an exciting glimpse into future research opportunities that can help us better understand and improve the lives of bariatric patients. For example, a qualitative study could provide a deeper understanding of the complex personal, psychological, and social factors (Creswell, 2014; Patton, 2014) that affect these patients' motivation to engage PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 43 in PA. In addition, the power of qualitative research, especially when combined with this quantitative data, would offer a unique, unattainable insight through quantitative studies alone. Furthermore, a randomized controlled study could test different interventions, such as education, health coaching, social support, and technology, to determine which might be most effective in improving motivation to engage in PA post-bariatric surgery. Such research could be revolutionary in the future of bariatric healthcare and help promote healthy lifestyles among patients. Finally, exploring the 24-hour movement cycle with bariatric patients presents a new avenue for future opportunities. A growing body of research (Carson et al., 2020; Kuzik et al., 2020; Stamatakis et al., 2019; Tremblay et al., 2017) has supported this contemporary framework, which considers the interrelated movement behaviors of sleep, sedentary time, and physical activity over a 24-hour period. For example, the studies conducted by Carson et al. (2020) and Kuzik et al. (2020) provide evidence for the benefits of adhering to a 24-hour movement behavior guideline with adults. Carson et al.'s (2020) findings revealed improvements in cardiorespiratory fitness, adiposity levels, mental health, and reduced risk of chronic conditions. Similarly, Kuzik et al. (2020) found positive cardiometabolic outcomes associated with adherence to this guideline. These findings underscore the significance of integrating physical activity, sedentary behavior, and sleep as part of a comprehensive approach to enhance health and well-being in adults. Furthermore, the absence of published research on this topic within the bariatric surgical patient population amplifies the potential for exploration. In conclusion, this area of study holds promise in uncovering novel insights and potential interventions that might significantly contribute to the health and recovery of bariatric surgical patients. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 44 Conclusions The findings of this study reinforce the conclusions of previous research, albeit conducted on different populations. Belanger et al. (2018) explored the relationship between motivation and PA in youth, demonstrating a positive association between intrinsic motivation and higher PA levels. Their study also highlighted the significance of intrinsic motivation in promoting sustained engagement in PA over time. Similarly, Jefferies et al. (2019) focused on motivation and PA among adolescents, revealing a positive correlation between intrinsic motivation and their participation in PA. Consistent with Belanger et al.'s (2018) findings, adolescents with higher levels of intrinsic motivation displayed greater adherence to regular PA. Additionally, studies by Huang et al. (2020) and Roetert and Ortega (2019) examined the relationship between motivation and PA in older adults. These studies further support the positive association between intrinsic motivation and higher PA levels among older adults. Collectively, these studies affirm the importance of intrinsic motivation in driving engagement in PA. The findings of this research underscore the significance of cultivating intrinsic motivation, like promoting lifelong enjoyment and personal satisfaction in PA engagement, within the post-bariatric surgical population. Moreover, integrating physical literacy education into the bariatric healthcare sector may be warranted, as the strong correlation between physical literacy, particularly the Knowledge and Understanding and Sense of Self sub-scales, and intrinsic motivation have been identified as significant predictors of motivation for PA in this population. In light of these findings, it may be imperative to address the need for incorporating physical literacy education as an integral part of the bariatric surgical patient's journey. The emphasis should shift from solely prescribing formal exercise programs to equipping patients PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 45 with physical literacy knowledge, skills, and a strong sense of self to engage in PA beyond traditional, prescriptive exercise guidelines. As the renowned philosopher Lao Tzu (n.d) once said, "The journey of a thousand miles begins with a single step." In the context of PA, we must remember that all movement counts and holds value. Let us embrace the power of every step, every dance, and every moment of physical expression as we strive for holistic well-being in the bariatric surgical population. PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 46 References American Society for Metabolic and Bariatric Surgery. (2019, June 20). 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Circulation Research, 118(11), 18441855. https://doi.org/10.1161/circresaha.116.307591 World Obesity Atlas 2022. (n.d.). World Obesity Federation. Retrieved June 8, 2022, from https://www.worldobesity.org/resources/resource-library/world-obesity-atlas-2022 Zabatiero, J., Hill, K., Gucciardi, D. F., Hamdorf, J. M., Taylor, S. F., Hagger, M. S., & Smith, A. (2015). Beliefs, barriers, and facilitators to physical activity in bariatric surgery candidates. Obesity Surgery, 26(5), 10971109. https://doi.org/10.1007/s11695-0151867-4 Zamarripa, J., Castillo, I., Baos, R., Delgado, M., & lvarez, O. (2018). Motivational regulations across the stages of change for exercise in the general population of PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Monterrey, Mexico. Frontiers in Psychology, 9(1), 1-11. https://doi.org/10.3389/fpsyg.2018.02368 69 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Table 1 Sample Demographics and Descriptive Statistics (N = 128) Variable Name and Categories N (%) Age <35 18 (14.1) 35-39 15 (11.7) 40-44 22 (17.2) 45-49 29 (22.7) 50-54 16 (12.5) 55-59 15 (11.7) 60-65 13 (10.2) Gender Female 115 (89.8) Male 13 (10.2) Caucasian White 86 (67.2) Non-Caucasian/Non-White 42 (32.8) Race NWI Residence No 17 (13.3) Yes 111 (86.7) Marital Status Married 75 (58.6) Not Married 53 (41.4) 70 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Education College Graduate 44 (34.4) Graduate/Professional 22 (17.2) Degree HS Graduate or GED 10 (7.8) Some College 52 (40.6) Surgery Type Gastric ByPass 42 (32.8%) Sleeve Gastrectomy 86 (67.2%) Years Since Surgery <1 year 32 (25) 1 year 22 (17.2) 2 years 18 (14.1) 3 years 14 (10.9) 4 years 15 (11.7) 5 years 15 (11.7) 6 years 12 (9.4) Not Safe 6 (4.7) Safety Safe 122 (95.3) Access to Physical Activity Good Access 116 (90.6) Poor Access 12 (9.4) Note. NWI = Northwest Indiana; HS = High School; GED = General Education Development. 71 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Table 2 Descriptive Statistics for PPLI Scores and Motivation Scores (N = 128) M (SD) PPLI Summary 33.58 (4.94) Knowledge and Understanding 12.55 (1.75) Self-Expression 11.08 (2.08) Sense of Self 9.95 (2.56) Autonomous Motivation Index 21.53 (4.21) Control Motivation Index 12.11 (4.22) Note. PPLI = Perceived Physical Literacy Instrument 72 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 73 Table 3 Correlations between PPLI Summary Score and Sub-Scores and Autonomous Motivation Index (N=128) r p PPLI Summary .44 < .001 Knowledge and Understanding .57 < .001 Self-Expression .13 .161 Sense of Self .35 < .001 Note. PPLI = Perceived Physical Literacy Instrument PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 74 Table 4 Correlations between PPLI Summary Scores and Sub Scores and Control Motivation Index (N=128) R P -.15 .096 Understanding -.24 .005 Self-Expression -.01 .883 Sense of Self -.11 .228 PPLI Summary Knowledge and Note. PPLI = Perceived Physical Literacy Instrument PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 75 Table 5 Linear Regression Model Predicting Autonomous Motivation Index from Knowledge and Understanding and Sense of Self (N = 128) B SE t 95% Confidence Interval Constant Lower Upper p 4.44 2.26 1.97 0.021 8.90 .051 Understanding 1.37 0.23 6.05 0.92 1.81 < .001 Sense of Self -.01 0.15 -0.03 0.31 0.30 .976 Knowledge and PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 76 Table 6 Correlations between Age and Motivation Measures (N=128) Autonomous Motivation Rs P -.01 .887 .13 .141 Index Control Motivation Index PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 77 Table 7 Correlations between Age and PPLI Summary Scores and Sub Scores (N=128) Rs P -.09 .312 Understanding -.12 .173 Self-Expression -.03 .720 Sense of Self -.06 .502 PPLI Summary Knowledge and Note. PPLI = Perceived Physical Literacy Instrument PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix A 78 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix B 79 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix C 80 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix D 81 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 82 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 83 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix E 84 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS ````````````````````````````````````````````````````````````````````````````` 85 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 86 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 87 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 88 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS 89 PHYSICAL LITERACY, MOTIVATION, AND BARIATRICS Appendix F 90  ...

... The Mental Health Impacts of a Cancer Diagnosis 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: Madeline Naylor, MSc Copyright June 22, 2023 By: Madeline Naylor, MSc All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Liana Apostolova, MD, MSc, FAAN Committee Member ______________________________ Stephen Novak, MA, MS 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 ______________________________ MENTAL HEALTH AND CANCER 1 The Mental Health Impacts of a Cancer Diagnosis Madeline Naylor Department of Interprofessional Health and Aging Studies, University of Indianapolis MENTAL HEALTH AND CANCER 2 Abstract Objective: This study aimed to understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer, and the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Method: A qualitative study utilizing a basic interpretive approach was conducted, which included individual semi-structured interviews with seven participants that were undergoing treatments and diagnosed with cancer of any type and at any stage prior to the start of the COVID-19 pandemic. Interviews were conducted using a semi-structured interview guide to capture the participants experiences with their mental health and quality of life in relation to their cancer diagnosis. Results: Six major themes emerged from the interviews and included: emotional overwhelm, fear of the unknown, learning to adapt to a new normal, maintaining a positive outlook, the impact of the COVID-19 pandemic, and mental health not being addressed as part of the standard of care in oncology. The findings suggest that a significant proportion of oncology patients experience mental illnesses present at all stages of their cancer journey and increase during periods of longer and more intense treatment cycles. Conclusions: The results of this study highlight the need for comprehensive mental health care that is integrated into cancer care. They also demonstrate the importance of addressing the mental health needs of cancer patients throughout the entire cancer journey to improve the quality of life for cancer patients and their overall well-being. Keywords: cancer, oncology, quality of life, mental health MENTAL HEALTH AND CANCER 3 Acknowledgments There have been many people who have contributed to the successful completion of this project. The completion of this study could not have been possible without the expertise and commitment of my dissertation committee, Chair - Dr. Borrero, Analysis Expert Dr. Liana Apostolova, and Content Expert Stephen Novak. I am forever grateful for all the time you poured into this study and for your feedback and guidance. Dr. Borrero, I am so thankful you served as my committee chair. You kept the entire process running smoothly and guided me through the process in such a caring manner. Dr. Apostolova, a special thank you for all your mentorship and friendship over the years. Getting my first research position at IU led me to go in the research direction for my studies and career, and I am extremely thankful to have worked (and still work) with such brilliant and compassionate individuals. Steve, I am so glad our paths have crossed. You taught me to never forget the reason behind a research career, to bring lifesaving treatments to patients, something I will live by for the entirety of my career. I would also like to thank all the participants of this study who were willing to share their experiences. Their willingness to share their brave stories as a means to improve cancer care continued to inspire me to complete this research. Their positivity and beautiful outlook on life despite their struggles touched my life and I hope it can make a difference for anyone else who reads this. To my village of support that made it possible to get here today, a sincere thank you. First and foremost, I could not have completed this without the love and support of my husband and son. Brock and Stephen, I don't even have the words to describe my love and gratitude for you both walking this journey with me. You two are my world and I could not have done this without MENTAL HEALTH AND CANCER 4 you by my side. Brock, you were there every late night and early morning, greeting me with coffee and encouraging words. Thank you for pushing me through, encouraging me on my hardest days, being my rock, and being the best teammate. Stephen Michael, my sunshine. You are the reason I work hard each day. I hope you always reach for the stars and never settle. My mom and Mike, I am forever indebted to you for all the support you have given me over the years. Thank you for always being my cheerleader and always believing in me. You have always encouraged me to follow my heart, and both of you, along with our entire family, have been by my side every single step of the way. And, to my guardian angel, my dad. The reason behind this research. Thank you for always supporting me, encouraging me, and shaping me into the person I am today. You should be here to both get me through the hard days and celebrate my successes. I miss you every single day. I pray that I make you proud. MENTAL HEALTH AND CANCER 5 Contents Abstract ..........................................................................................Error! Bookmark not defined. Mental Health in Oncology Patients During the COVID-19 Pandemic ......................................... 8 Problem Statement ...................................................................................................................... 8 Purpose Statement ....................................................................................................................... 9 Research Questions ..................................................................................................................... 9 Significance of the Study ............................................................................................................ 9 Definition of Key Terms ........................................................................................................... 10 Literature Review.......................................................................................................................... 10 Mental Health and Cancer ......................................................................................................... 11 Cancer Care and Mental Health............................................................................................. 13 The Impact of Mental Health on Quality of Life ...................................................................... 15 The Pandemics Impact on Mental Health ................................................................................ 16 Research Considerations ........................................................................................................... 17 Conclusion................................................................................................................................. 18 Method .......................................................................................................................................... 19 Study Design ............................................................................................................................. 19 Participants ................................................................................................................................ 19 Procedures ................................................................................................................................. 20 Sampling and Recruitment .................................................................................................... 20 MENTAL HEALTH AND CANCER 6 Informed Consent .................................................................................................................. 22 Data Collection ...................................................................................................................... 23 Data Management and Analysis ............................................................................................ 24 Rigor/Trustworthiness ............................................................................................................... 26 Results ........................................................................................................................................... 26 Emotional Overwhelm .............................................................................................................. 28 Fear of the Unknown ................................................................................................................. 31 Adapting to a New Normal ....................................................................................................... 33 Maintaining a Positive Outlook ................................................................................................ 35 The COVID-19 pandemic ......................................................................................................... 38 Mental Health Not Being Addressed in Standard of Care ........................................................ 39 Discussion ..................................................................................................................................... 42 Limitations ................................................................................................................................ 48 Contribution to the Profession .................................................................................................. 48 Future Research ......................................................................................................................... 51 Conclusion .................................................................................................................................... 52 References ..................................................................................................................................... 54 Table 1: Participant Demographics Table..................................................................................... 62 Table 2: Theme Table ................................................................................................................... 63 Figure 1: Theme Concept Map ..................................................................................................... 73 MENTAL HEALTH AND CANCER 7 Appendix A: Volunteer Recruitment Information ........................................................................ 74 Appendix B: Study Information Sheet Informed Consent ............................................................ 75 Appendix C: Interview Guide ....................................................................................................... 78 Appendix D: Approval Letter ....................................................................................................... 80 MENTAL HEALTH AND CANCER 8 Mental Health in Oncology Patients During the COVID-19 Pandemic The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Though heavily funded, the cancer research industry earmarks very little for the evaluation of potential psychological disorders from initial diagnosis through post-treatment surveillance (Martinez & Pasha, 2017). Yet, past research has shown that adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer (Martinez & Pasha, 2017). Furthermore, if left untreated, mental health disorders have been shown to hurt the progression of cancer at a molecular and cellular level (Martinez & Pasha, 2017). The focus on mental health in oncology patients is especially important during public health emergencies, such as the COVID-19 pandemic. For example, the long duration of quarantine and self-isolation during the COVID-19 pandemic had a profound negative impact on the mental health of a large portion of our population healthy or otherwise (Javed et al., 2020). Cancer patients are at a higher risk of serious illness, and many have expressed anxieties about leaving their homes and risking exposure (Aubry, 2020; Yildirim et al., 2021). Such protective measures often intensify feelings of loneliness (Aubry, 2020; Hwang et al., 2020). Frey et al. (2020) found that isolation, compromised immune systems, and delays in cancer care were associated with significantly higher levels of worry, anxiety, and depression. Problem Statement Patients with cancer are at a higher risk of developing psychological disorders that impact their disease progression and overall well-being. Thus, for many oncology patients, taking the precautionary measures associated with COVID-19, such as social distancing, may have contributed to the prevalence of psychological disorders. The negative implications of mental MENTAL HEALTH AND CANCER 9 health disorders in cancer patients have previously been shown (Aubry, 2020; Javed et al., 2020); however, the qualitative experiences of patients during the pandemic have not been widely studied. Purpose Statement The researcher aimed to understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The researcher also aimed to understand their perceptions of the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Research Questions This study addressed the following question and sub-questions: 1. How do oncology patients describe the relationship between their mental health and the current state of their cancer? a. How do oncology patients evaluate the impact of mental health on their quality of life? 2. What are the perceptions of oncology patients regarding the impact of the COVID-19 pandemic on their mental health? Significance of the Study The examination of this information will allow healthcare workers to better understand how patients experience their mental health after receiving a cancer diagnosis and the additional impact of highly stressful events, like a pandemic, has on their mental health. If a clear connection exists between mental health disorders and disease progression, protocols could be created to care for these disorders more effectively as part of standard oncology care. With MENTAL HEALTH AND CANCER 10 oncology-related medical visits continuing to rise, research on the prevention, detection, and treatment of psychological disorders is pivotal for cancer care (Martinez &Pasha, 2017). Definition of Key Terms Cancer: The condition in which cells divide uncontrollably and abnormally (National Cancer Institute, n.d.). Oncology: The study and treatment of cancer (National Cancer Institute, n.d.). Quality of life: A state of well-being that is comprised of two components: 1) the ability to perform everyday activities which reflect physical, psychological, and social wellbeing and 2) patient satisfaction with levels of functioning and the control of disease and/or treatment-related symptoms (Post, 2014). Mental Health: A individuals overall psychological and emotional condition. Good mental health is a state of well-being in which a person is able to cope with everyday events (National Cancer Institute, n.d.). Literature Review Cancer has been studied in human beings and other animals throughout recorded history (National Cancer Institute, n.d.), however, it has only been more recently that psychological problems associated with cancer have been more closely considered (Gregurek et al., 2010). Current research indicates that one-third to half of oncology patients have a psychiatric comorbidity disorder (Gregurek et al., 2010; Niedzwiedz et al., 2019). The most common conditions diagnosed are depressive disorder, post-traumatic stress disorder, and anxiety disorders (Gregurek et al., 2010). Researchers have concluded that common problems for oncology patients are the expression of emotion and suppression of depressive moods (Gregurek et al., 2010). Mental health disorders may adversely impact treatment and recovery, as well as MENTAL HEALTH AND CANCER 11 the quality of life and survival (Gregurek et al., 2010; Mental Health Foundation, 2021). The COVID-19 pandemic has added additional stressors to these patients contributing to increased anxiety and depression caused by fear of illness and isolation measures (Frey et al., 2020; Irwin, 2020). Mental Health and Cancer With the incidence of cancer predicted to increase by 49% over the next 15 years worldwide (Weir et al., 2021), attention to the psychiatric burden of the disease is critical for cancer care (Caruso & Breitbart, 2020). Cancer patients are experiencing depression and anxiety disorders before, during, and after treatment, influencing the overall burden of the disease (Caruso & Breitbart, 2020; Mental Health Foundation, 2021). Patients tend to delay treatments or miss check-ups when feeling anxious or depressed (The Mental Health Foundation, 2021). It has been found that psychological factors also affect cancer detection, treatment, and survival (Gregurek et al., 2010; Niedzwiedz et al., 2019; Spiegel & Giese-Davis, 2003). The molecular basis for this has been studied, and psychoneuroimmunology mechanisms have been investigated (Gregurek et al., 2010; Sotelo et al., 2014). Researchers have found cytokines to have an impact on the biological and psychological behavior of the disease and may be the basis for symptoms of fatigue, anxiety, depression, and cognitive change (Gregurek et al., 2010; Sotelo et al., 2014). Depression is also linked to a rapid progression of the disease which is thought to be from neurological changes, reduced treatment compliance, and behavioral changes (Gregurek et al., 2010). Studies also suggest that psychological stress such as anxiety and depression is directly linked to poorer recovery of DNA and leads to malignant alteration and cell apoptosis (Gregurek et al., 2010). Though more research needs to be conducted in this area, this data supports the idea that psychological disorders such as anxiety and depression can impact disease progression and MENTAL HEALTH AND CANCER 12 disease state. This is significant since the prevalence of these disorders is high among cancer patients. The prevalence of cancer patients diagnosed with depression ranges from 4% to 49%, with a mean of 20% (Krebber et al., 2014; Nasser et al., 2021; The National Behavior Health Network, 2018; Niedzwiedz et al., 2019; Weir et al., 2021). The prevalence of those diagnosed with anxiety is approximately 45% of cancer patients (Krebber et al., 2014; The National Behavior Health Network, 2018; Niedzwiedz et al., 2019; Weir et al., 2021). Despite this, the mental health of cancer patients is still not being properly addressed before, during, or after treatments (Nasser et al., 2021; Mental Health Foundation, 2021). Only 15.5% of cancer patients diagnosed with anxiety or depression have been prescribed medications or have received treatments to help manage their conditions (Nasser et al., 2021). A variety of factors related to the stage and type of cancer, such as the type of treatments needed and the physical symptoms associated with specific cancers, may uniquely impact ones mental health (Caruso & Breitbart, 2020; Niedzwiedz et al., 2019). Those experiencing symptoms such as incontinence and sexual dysfunction may be at an increased risk of developing depressive symptoms (Niedzwiedz et al., 2019). The type of treatment is also thought to have an impact and previous research suggested that depression rates were the highest during treatments (Niedzwiedz et al., 2019). Treatments including immunotherapy and chemotherapy may induce depression through inflammatory pathways, and some medications used to treat the side effects of chemotherapy can increase the risk of depression by reducing dopaminergic transmissions (Niedzwiedz et al., 2019). In contrast, more recent research found it to be the highest when the patients are in remission (Niedzwiedz et al., 2019) as, once treatment stops, survivors feel a sudden loss of support, leaving them feeling abandoned at a time when support is needed the MENTAL HEALTH AND CANCER 13 most (Mental Health Foundation, 2021). Anxiety was found to be the highest following treatment (27%) and during treatment (26%) (Nasser et al., 2021; Niedzwiedz et al., 2019). Anxiety in cancer patients is thought to be linked to fear of the unknown and fear of recurrence (Loughan et al., 2021; Niedzwiedz et al., 2019; ORourke et al., 2021; Sarkar et al., 2021). Fear of recurrence is one of the most unaddressed issues among cancer survivors (Loughan et al., 2021; Sarkar et al., 2015; Simard et al., 2013). Certain characteristics of the cancer experience can have a detrimental mental impact including feelings of hopelessness and uncertainty (Niedzwiedz et al., 2019), loneliness (Niedzwiedz et al., 2019; Krebber et al., 2014), and fear (Niedzwiedz et al., 2019; Mental Health Foundation, 2021). Cancer Care and Mental Health Cancer care from diagnosis to survivorship should be centered on treating all aspects of the disease (Aubry, 2020). Currently, however, the mental health needs of cancer patients are often not addressed during or after cancer treatment (Mental Health Foundation, 2021). The Mental Health Foundation conducted recent interviews among this patient population and found 49% of those interviewed said they received no support or advice from their healthcare team about managing their mental health, and 66% said they were not informed about the potential mental health problems that could arise once diagnosed (Mental Health Foundation, 2021). In addition, 73% of patients with anxiety and depression were not receiving mental health treatments (Niedzwiedz et al., 2019). Given that untreated mental health disorders may promote cancer progression, it is important to consider if the treatment of such disorders has a positive effect on the overall morbidity and mortality of cancer patients (Martinez and Pasha, 2017). Psycho-oncology is one approach developed approximately twenty years ago that treats the emotional and psychological side of cancer (Gregurek et al., 2010). MENTAL HEALTH AND CANCER 14 The main purpose of psycho-oncology is to explore the multidimensional areas of cancer care by addressing the psychological responses to cancer among patients and the psychological, behavioral, and biological factors that affect cancer occurrence, detection, treatment, and survival (Gregurek et al., 2010). The absence of information and knowledge has been reported to be a leading cause of inadequate psychological care (Adler & Page, 2008). The reasons described by cancer patients for their psychological needs still not being met by their providers include poor communication, symptoms failing to be recognized, and lack of resources provided (Adler & Page, 2008). Many cancer patients have reported being dissatisfied with the information, education, and support received and wish to have resources tailored to their individual needs and clinical diagnosis (Adler & Page, 2008). The psycho-oncology method suggests a multi-disciplinary approach including psychiatrists, social workers, and other mental health resources should be taken when caring for cancer patients (Gregurek et al., 2010). Though this method is an accepted part of care treatment, there have not been remarkable advances in providing high-quality care for the psychological effects of cancer. The integration of the psycho-oncology approach is only occurring in about 43% of cancer patients (Senf et al., 2018). Challenges to the integration of this approach have included the availability of resources, and the support for training clinicians and investigators in psycho-oncology (Holland, 2018). The psycho-oncology workforce is insufficient and hard to access outside of major cities (Vaccaro et al., 2019). The integration of this practice into healthcare practice is strongly influenced by physicians competencies and their commitment to psycho-oncology (Senf et al., 2018). Physicians serve as the link between patients and the needed supported services and serve as the first line of assessment of psychosocial distress (Senf et al., 2018). A primary challenge oncologists face is differentiating between the expected MENTAL HEALTH AND CANCER 15 amount of distress associated with a cancer diagnosis and when distress requires psychiatric intervention (Gregurek et al., 2010). Clinical experience and training in psycho-oncology reveal a major gap between the recommended psychological care and its standard-of-care practice (Holland, 2018; Senf et al., 2018). Further research is needed to determine the effectiveness of psychological interventions; however, current research shows that some form of mental health detection and treatment should also be included in the training of all healthcare professionals to meet the demands of cancer patients (Gregurek et al., 2010; Senf et al., 2018). In addition, offering the appropriate resources and educational opportunities to physicians to encourage a more collaborative, multi-disciplinary approach for cancer patients, may improve the areas where they feel their psychological needs are still being unmet. The Impact of Mental Health on Quality of Life Mental health can also impact the quality of life of cancer patients. Assessing the quality of life among these patients captures the subjective well-being in physical, emotional, functional, and social domains (Ramasubbu et al., 2020). The extent of the patients psychological symptoms has been shown to have an impact on all quality-of-life domains (Ramasubbu et al., 2020), with previous research indicating lower functional, physical, emotional, and social wellbeing among this population (Ramasubbu et al., 2020). The Mental Health Foundation (2021) advocates for psychosocial cancer care to be part of standard cancer treatments to foster a better quality of life. Depression and anxiety may hinder the quality of life and survival among cancer patients as well as treatment and recovery (Caruso & Breitbart, 2020; Gregurek et al., 2010). Anxiety is associated with increased feelings of pain, nausea, problems with cognition, and disturbed sleep all impacting the quality of life in cancer MENTAL HEALTH AND CANCER 16 patients (Gregurek et al., 2010; The Mental Health Foundation, 2021). If not treated properly, anxiety can negatively affect the length of the patients life (Gregurek et al., 2010), and both anxiety and depression have an impact on social and family functioning. The fear of cancer recurrence is also associated with increased emotional distress impacting the quality of life (ORourke et al., 2021; Loughan et al., 2021). Addressing the fear of cancer recurrence is one of the most reported unmet needs in cancer patients (Simard et al., 2013; Sarkar et al., 2015). Patients who experience depression may have a harder time coping with their diagnosis and making decisions about their care (Caruso & Breitbart, 2020; Gregurek et al., 2010; The Mental Health Foundation, 2021). Additionally, depression is associated with worse pain management, poorer treatment compliance, and less desire for long-term treatments (Gregurek et al., 2010). The diagnosis of clinical depression also comes with symptoms such as social withdrawal, anhedonia, feelings of worthlessness, burden and guilt, low self-esteem, and suicidal ideations (Gregurek et al., 2010). The Pandemics Impact on Mental Health The above-listed statistics for depression and anxiety are from studies conducted before the COVID-19 pandemic. The prevalence of depression and anxiety is thought to be even higher among cancer patients since the start of the pandemic (Fiorill & Gorwood, 2021; Weir et al., 2021). The pandemic has had a profound negative impact on mental health with healthcare professionals seeing an increase in depression and anxiety disorders in a large portion of our population (Javed et al., 2020; Fiorill & Gorwood, 2021). Recent studies found several psychological symptoms in quarantined individuals including stress, depression, irritability, insomnia, fear, confusion, and frustration (Fiorill & Gorwood, 2021; Pfefferbaum & North, MENTAL HEALTH AND CANCER 17 2020; Weir et al., 2021). Psychiatrists and other mental health professionals are treating more patients and modifying their practices to support the mental health needs of their patients (Fiorill & Gorwood, 2021). The psychological consequences of quarantine, social distancing, and social isolation can be particularly detrimental to those with increased vulnerability such as individuals with compromised immune systems or preexisting medical conditions (Fiorill & Gorwood, 2021; Pfefferbaum & North, 2020). Cancer patients face increased challenges during the COVID-19 pandemic adhering to isolation guidelines and caring for their psychological well-being (Aubry, 2020; Massicotte et al., 2021). Cancer patients have also experienced a substantial number of stressors related to the pandemic, which have been linked with increased psychological symptoms (Massicotte et al., 2021). Stressors that have been associated with the highest degree of concern are difficulty obtaining medicine and essential items, postponement or cancellation of cancer treatment and medical tests, and changes in cancer care trajectory (Massicotte et al., 2021). The higher number of stressors experienced is significantly associated with greater levels of anxiety, depression, and insomnia (Massicotte et al., 2021). Studies are finding the prevalence of depression and anxiety in cancer patients during the pandemic is reaching considerable levels (Aubry, 2020: Ayubi et al., 2021; Massicotte et al., 2021; Weir et al., 2021). Research Considerations Previous studies have been conducted examining the impact of mental health in cancer patients, but overall, there is a lack of research supporting the idea that psychological disorders can have an impact on disease progression and disease state among cancer patients. Many of the studies that have been conducted represent the most common types of cancer such as breast, lung, and prostate cancer (Niedzwiedz et al., 2019). Additionally, the impact the COVID-19 pandemic has had on the mental health of these patients has not yet been MENTAL HEALTH AND CANCER 18 widely studied (Pfefferbaum & North, 2020). More data also needs to be collected on the potential negative effects of psychological disorders the pandemic has on cancer patients (Pfefferbaum & North, 2020). Conducting a qualitative study will allow cancer patients to describe their personal experiences and the impact they feel the pandemic has had on their mental health and overall disease state. Conclusion Living with cancer presents many obstacles for patients, and the effects of the COVID-19 pandemic compound the already challenging reality of living with cancer (Aubry, 2020). Qualitative research concentrating on mental health in relation to disease progression and quality of life can help find ways to better support their care. Patients may not disclose their psychiatric symptoms due to the stigma surrounding mental health conditions if they perceive a lack of effective treatment options (Niedzwiedz et al., 2019). A survey from the Mental Health Foundation (2021) found that when asked what kind of support would have improved mental well-being during and after cancer treatments, over 60% said counseling, 42% said better access to information, 30% said peer group support and 51% said better communication from providers. Educational programs for oncology healthcare workers may foster better patient interaction allowing them to address the mental health needs of their patients more effectively (Ramasubbu et al., 2020). There are major gaps in cancer care regarding mental health and the needs of these patients are being severely under-addressed. Gathering more research from a patients perspective, specifically during the COVID-19 pandemic, is the first step to better understanding the impact of mental health so cancer patients can receive the best, well-rounded care. MENTAL HEALTH AND CANCER 19 Method Study Design The study used a basic interpretive approach with the aim to capture the participants perceptions of their mental health and how they view the impact mental health has on their disease state. The researcher also sought to capture how oncology patients characterize their mental health during the COVID-19 pandemic. The objective of the basic interpretive design was to encourage participants to share their individual stories and understand the nature of a phenomenon through patients lived experiences (Merriam, 2002). Participants All study participants met the following inclusion criteria to be eligible for study participation: 1. At least 18 years of age. 2. Fluent in English. 3. Diagnosed with cancer of any type and at any stage (1-4) prior to the start of the COVID19 pandemic. 4. Undergoing current cancer treatments (at the time of recruitment). The following were exclusion criteria for the study: 1. Individuals diagnosed with a pre-existing mental health condition including major depressive disorder, anxiety, bipolar disorder, or schizophrenia prior to receiving their cancer diagnosis. 2. Individuals who have experienced a major life-changing event during the COVID-19 pandemic. Life-changing events include separation, divorce, loss of a friend or relative, income loss, or job loss. MENTAL HEALTH AND CANCER 20 3. Individuals receiving treatment at the time of recruitment but did not undergo any form of treatment prior to the COVID-19 pandemic. Procedures Sampling and Recruitment The researcher used the purposeful sampling technique of maximum variation sampling to identify participants for the study. By purposefully selecting the participants for the study, the researcher gained valuable information from a small sample size (Palinkas et al., 2015). Through maximum variation sampling, the researcher aimed to sample a reasonably equal number of participants at different stages of cancer, including stages 1-4, which was intended to provide a varied picture of the phenomenon being studied (Patton, 1990). The researcher originally aimed to conduct a total of 7-10 interviews with the goal to select individuals who would communicate their experiences of their mental health in a reflective manner (Palinkas et al., 2015). This sample size range, using purposeful sampling, is large enough to gain a robust and deep understanding of the participants experience and small enough to demonstrate clear themes without presenting erroneous information (Vasileiou et al., 2018). The researcher obtained Institutional Review Board (IRB) approval for the study from the University of Indianapolis Human Research Protections Program before study procedures were carried out. Recruitment began once IRB approval was obtained. The researcher is a regional representative for the American Cancer Society and started recruitment of participants through the current Relay for Life listserv, a well-known, annual American Cancer Society event to which the researcher manages. This list encompassed cancer patients, survivors, and caregivers. The researcher obtained permission from a Senior Community Manager at the American Cancer Society, to access the list for research purposes. MENTAL HEALTH AND CANCER 21 Per the guidance of the Senior Community Manager, a disclaimer stating the research is not affiliated with American Cancer Society, but for the researchers own educational pursuits was added to all outreach materials. The researcher sent an email to the list detailing the objective of the study, participation requirements, study duration, confidentiality measures, and the inclusion and exclusion criteria for the study (see Appendix A). The researcher did not receive any potential participant replies to the email with this recruitment strategy. Since the researcher was unable to obtain the desired number of participants through emails sent to the listserv, she then used Facebook as a secondary recruitment method. The researcher made a Facebook post on both her personal Facebook page and on the regional Relay for Life Facebook page that she manages after receiving proper approval to do so. The Facebook post included the objective of the study and the inclusion and exclusion information (see Appendix A). The researcher did not receive any potential participant replies with this recruitment strategy. As a third recruitment option, the researcher pursued clinics from a local health system to recruit participants for the study. To do so, the researcher obtained Institutional Review Board (IRB) approval for this new recruitment method from the University of Indianapolis Human Research Protections Program and the local hospitals Human Research Protections program (see Appendix D). Recruitment began with the above recruitment method once IRB approval was obtained at both institutions. After being given temporary access to the radiation clinic schedule, the researcher sent a recruitment email to individuals who met the studys inclusion criteria in which she explained the objective of the confidential study and the inclusion and exclusion criteria. Once a potential MENTAL HEALTH AND CANCER 22 participant replied with their interest, the researcher scheduled a follow-up call with the individual to review the study in detail including the study procedures, study duration, and confidentiality measures (see Appendix A). Eligibility was confirmed during the follow-up call using an eligibility checklist that included all inclusion and exclusion criteria. If the participant was still interested and deemed eligible, a virtual interview was scheduled. The participant was provided with a study information sheet at this time. The study information sheet, which can be found in Appendix B, was emailed along with a confirmation of their scheduled interview time immediately following the interview being scheduled. This ensured ample time to review the study and ask questions before beginning any procedures. Informed Consent The informed consent process was conducted following the Good Clinical Practice (GCP) guidelines of clinical research. GCP is the ethical standard for clinical research design, conduct, monitoring, auditing, recording, and analyses (Vijayananthan & Nawawi, 2008). It also protects the rights, confidentiality, and integrity of trial subjects and data (Vijayananthan & Nawawi, 2008). Verbal informed consent was obtained from all participants before the start of data collection. The informed consent process was carried out by the researcher using the study information sheet and included the study aim, a detailed description of the study procedures, the risk and benefits, methods to protect participant confidentiality, how data will be used, the option for them to withdraw their consent at any time, and the researchers contact information. The researcher was mindful of the sensitive and personal nature of the study, and assured the participants that she would handle their stories with care and respect. She asked the participants to only provide details they felt comfortable sharing. She also reviewed that at any point they may skip a question or end the interview. She thanked them sincerely for their MENTAL HEALTH AND CANCER 23 willingness to share their story and highlighted the value of their participation. All questions and concerns from participants were addressed before verbal informed consent was requested. Additionally, consent to audio record the interview was obtained from each participant prior to starting the recording. Data Collection Data was collected through individual semi-structured interviews with the participants. Interviews were conducted using a semi-structured interview guide (see Appendix C) created by the researcher to capture the participants experiences with their mental health and quality of life in relation to their cancer diagnosis. Interviews were conducted virtually. The interviews were audio recorded using a digital voice recorder. Once the recording began, the researcher provided a standard introduction reviewing the interview structure and type of interview questions. The interview began with an open-ended question asking the participants to share their experience of receiving their cancer diagnosis. Participants shared when and how they were diagnosed, with what type and stage of cancer they were diagnosed, and an in-depth depiction recounting the events leading up to their diagnosis. The researcher asked prompts and follow-up questions and transitioned into asking about the impact the participants felt their diagnosis had on their mental health. The interview was structured with a flow of questions from general to specific, and though an interview guide with pre-established questions was used, it was important for the researcher to make the interview feel like a conversation. During the interviews, the researcher noted details such as vocal intonation and emphasis by the participants. The interviews ended when the pre-determined questions were exhausted, and the participants noted they did not have any further information to share. Interviews averaged 37-50 minutes in length. MENTAL HEALTH AND CANCER 24 Reflexivity techniques such as journaling, internal reflection, and memoing allowed the researcher to be self-aware of their personal bias and continually reflect upon their relationship with the research. Journaling occurred both before conducting the interview and after the interview was conducted with each participant. Memoing allowed for the articulation of the researcher's thoughts and personal study assumptions to be recorded and reflected upon during both the data collection and analysis process (Stuckey, 2015). Memoing also allowed the researcher to note how she interpreted patterns and themes throughout the study process and helped them recognize if their interpretation of the data changed at any point throughout data collection (Stuckey, 2015). Data Management and Analysis Audio recordings of the interviews were transcribed verbatim by the researcher using Temi, a software transcription program. The researcher used the exact words and expressions of the participant to honor how their personal experiences were shared. All data, including the audio recordings, were stored securely on a password-protected computer. The list of eligible participants provided by the local hospital system was stored on REDcap, a secure web application specifically geared toward supporting research. Only authorized researchers and personnel working on the study had access to study documents. Participants were assigned a study ID in lieu of their names, and all other personally identifiable information was omitted from the study documents. If a paper is published from the findings, the recordings will be kept for a minimum of three years and properly destroyed when no longer needed. The interview transcripts were read multiple times to allow the researcher to be immersed in the data. The researcher then coded the transcripts. In doing so, the researcher noted keywords, phrases, and segments presented in each interview that was relevant to the research MENTAL HEALTH AND CANCER 25 question and assigned each of them an associated label or code. Once the transcriptions were coded, a codebook was developed to organize and categorize related data (Stuckey, 2015). The researcher created the codebook with codes that reflected common themes from the transcripts. The codebook also contained code definitions, locations within the transcript, and representative participant quotations. A secondary researcher affiliated with the study and with experiences in qualitative research was involved in the coding process. The secondary researcher provided guidance on the coding process throughout. The method of cross-checking was used to support the dependability of the results (Henderson & Rheault, 2004). Specifically, the two researchers independently coded the first four transcripts and then came together to compare their codes. Once the primary and secondary researchers agreed on the common themes from the coded transcripts, a theme table (see Table 2) and concept map (see Figure 1) were created to further develop the themes associated with the study and help the researcher better understand the relationship between the themes. The concept map and theme table were used as a schematic device to help the researcher focus on the meaning and connections of the data (Daley, 2004). The map was created with the more inclusive concepts at the top and connected through linking words of other concepts (Daley, 2004). The theme table was categorized by common themes seen in the participant interviews, and direct quotations from the interview were included to support the theme. Each participant had the opportunity to engage in member checking to minimize study bias. Specifically, a detailed summary of the themes developed by the researcher was emailed to each of the participants for review. Each was asked to confirm or provide clarification about the accuracy of the researchers interpretations (Candela, 2019). Accordingly, the process helped ensure that all data collected correctly portrayed the voices of the participants (Candela, 2019). MENTAL HEALTH AND CANCER 26 Rigor/Trustworthiness The researcher took necessary steps to ensure the trustworthiness of the data, focusing on four areas during both data collection and analysis: credibility, confirmability, transferability, and dependability (Henderson & Rheault, 2004). Methods to ensure the credibility of the data were the use of in-depth interviews with open-ended questions, audio recordings of the data, the creation of verbatim transcripts, the use of a secondary coder, and the participant member checking the themes. The above methods allowed the researcher to develop an accurate representation of the participants experiences and strengthen the confidence in the truth of the data. Methods to support confirmability reduced the bias in the research (Henderson & Rheault, 2004). Using methods such as field notes to make detailed observations, journaling, and memoing throughout the process helped ensure the data reflected the participants' voices and not the researchers' bias. Triangulation, using multiple researchers to evaluate the collected data, was used to help ensure dependability. Including a detailed and sequential description of all the study procedures and methods also promoted the dependability of the data by allowing the study to be repeated by another researcher (Henderson & Rheault, 2004). Transferability reflects the extent to which the results could be applied to a similar group of participants in a comparable context (Henderson & Rheault, 2004). This was accomplished by collecting ample demographics, background information, and contextual details about the participants and their experiences. Results Seven participants were interviewed for this study: six women and one man. Ages ranged from 40 to 79 years old. Interviews with the participants averaged 39 minutes long, and all were MENTAL HEALTH AND CANCER 27 conducted remotely. Six interviews were conducted via phone, and one was conducted via Zoom video conferencing. The types of cancer at diagnosis included two participants with breast cancer, three participants with leukemia, and two participants with brain cancer. Of the participants, one was diagnosed with breast cancer for their first diagnosis and received a separate diagnosis of terminal brain cancer three years later. The stages of cancer at the time of diagnosis ranged from stage I-III. The participants were initially diagnosed before the start of the COVID-19 pandemic and undergoing current treatments. Treatment plans have included either chemotherapy, radiation, surgical removal, or all three treatment types for their cancer. The participants with leukemia all had to undergo bone marrow transplants in addition to their cancer treatments and two participants with leukemia had to have an in-patient hospital stay for several weeks for their treatments. All participants who received chemotherapy for their treatments received IV chemotherapy during their treatment course, though some have switched over to pill chemotherapy currently that they can take daily at home. The full demographics of the participants can be found in Table 1. Six major themes were consistent with each interview and included: emotional overwhelm, fear of the unknown, learning to adapt to a new normal, maintaining a positive outlook, the impact of the COVID-19 pandemic, and the importance of mental health being addressed as part of their standard of care. Participants had strikingly parallel experiences with receiving their cancer diagnosis, how they viewed their diagnosis impacted their mental health, and the perceived effect their diagnosis had on their daily lives. Participants also shared similar experiences about the impact COVID-19 MENTAL HEALTH AND CANCER 28 had on their daily lives and their treatments. However, the participants shared different experiences surrounding the extent to which they felt their mental health was properly addressed by their providers and whether they were given satisfactory resources to address their mental health. Five of the participants stated the mental health aspect was unaddressed or underaddressed, including being given no resources, while two participants stated they felt it was sufficiently addressed and that they were given the resources they needed. Emotional Overwhelm For all participants, treatments started immediately after diagnosis, resulting in emotional overwhelm. The need for immediate treatment left no time to gather additional information. The participants described the experience as being given a lot of information in a very short amount of time and not having the time to stop and digest it all. So yeah, it's, in the beginning, it is very much a rollercoaster. I don't know how anyone can be prepared for that. And I remember in the earlier weeks waking up some days being like, is this true? Like, is this really happening to me? Like, am I, I really have to say I have cancer. Like, it was very hard in the beginning to say the cancer word. (Participant 001) Later in the interview, participant 001 noted, Everyone was making sure I was taking the time to you know, heal and breathe basically. Four participants shared in detail their experience of receiving their diagnosis and described the impact of the immediacy of their treatments. Participant 002 stated My doctor called at 6 pm on a Friday and said You have leukemia. And I have reserved a bed for you down at [*** Cancer Center] and so you have to go down there now.. Participant 005 shared a similar experience stating: MENTAL HEALTH AND CANCER 29 I had gone into our family doctor, and he called me at home, and he said, I need you to get to see this specialist on that same day. I want you there in an hour. And we didn't even know where. And that's one thing he said, you do not drive. Have your spouse take you. Participant 005 also shared how important the urgency of their care was stating: When I was first diagnosed, I had to go into the hospital and have transfusions because I was very, very low on, uh, blood. My bone marrow had really, uh, quit producing blood. So, they told us at the time that had I not come in, I probably would've passed in a couple of weeks. Participant 003 explained they were urged by friends after getting sick at work to go to the ER. This participant thought they just had the flu. In the ER, after a CT scan and MRI, they found a tumor the size of an egg. After that, things happened quickly. I was in surgery that evening to remove the tumor then started radiation and chemo treatments right away. It was all so quick (Participant 003). Participant 001 went in for a routine mammogram and quickly got the call of their results. They shared they told me, things would move quickly from there. And they did. We got back from vacation, I think on a Saturday, Monday I had my port placed, and Thursday I started my first round of chemo. The theme of emotional overwhelm arises at many points during all the interviews when each participant mentions the word shocked or overwhelmed in some form. Participant 002 stated, So they started Monday, they did a bone marrow biopsy. They explained what was going on because honestly, I was just in shock. And participant 003 expressed The whole process MENTAL HEALTH AND CANCER 30 was very overwhelming. Which is why the mental health aspect should be addressed periodically throughout the process. Participants 005 and 007 recalled feeling as if they were just given a death sentence and shared their experiences surrounding their initial diagnosis. Participant 005 stated, I think because you know when you first hear leukemia, you think it's a death sentence. You know. And so, at first, we were both very scared. 005 continued to share: Youre not expecting to hear cancer. Youre not expecting to hear anything like that. Like I said, we got the call to go to the specialist and this is all and the same afternoon. I didnt even know what was going on. They sent me down to the hospital to get a blood transfusion. So, you know, that kind of catches you off guard. Participant 007 stated So I received my first cancer diagnosis in 2007. I was 27, stage three breast cancer. It was traumatic, um, , it just felt like a death sentence and, um, psychologically it wrecks you, I must say. Participant 007 was diagnosed for a second time three years later and recalls hearing cancer again was just as traumatic as the first time. They state then came my brain tumor in 2010, not a metastasis. So, it was a whole reopening of that trauma, like going through it a second timeUm, and it's very traumatic. It causes a form of like PTSD in essence, and there's very little help for that. Emotional overwhelm wasnt just present at the time of initial diagnosis but during times of remission and relapse as well. In an out of remission does try, you know, your mental health, you're like, oh my gosh, seriously. Yeah. I totally thought I was done with this (Participant MENTAL HEALTH AND CANCER 31 002). I try to find that ability to think that things are going to go well. But then I got rediagnosed again and you're like, oh my gosh, are you kidding me? Seriously (Participant 002). The physical aspect that came with the diagnosis, both physical appearance and physical fatigue also played a role in feeling overwhelmed. Participant 004 shared I had long hair, and my hair was like thick, real thick. But that was my thing. I didn't wanna lose my hair. That, that's where I had the emotional time dealing with, was mostly my hair. Treatment this time around has been much more difficult because it's been longer and more physically fatiguing. I believe that's been more mentally trying than anything (Participant 004). Fear of the Unknown All seven participants recounted how their diagnosis led them to have a fear of not knowing what their future held. Feelings of anxiety surrounding family planning were shared by many of the participants. Participant 003 stated: Just not knowing what is going to happen. What is going to happen with my kids, my [spouse]? The increased anxiety prompted us to make changes and get affairs such as the will, estate planning, and DNR in place. There was just so much to consider, and it was all happening so quickly. Participant 003 stated again later in the interview No matter how was feeling, I just knew I had to keep going for my children. Participant 001 had similar thoughts stating, So in the beginning, of course being a [parent] of three young kids, eleven, seven, and three, my first thing was what about my boys?. During the time of remission, the length of time between each appointment was also a cause for anxiety. The National Cancer Institute talks about one of the hardest things after MENTAL HEALTH AND CANCER 32 treatment is not knowing what happens next. Once they got me in remission, I went to the oncologist every three months and then six months and then, um, nine months to keep checking my numbers (Participant 005). All participants shared similar experiences of feeling stuck in emotional limbo living from one appointment to the next, never feeling completely confident that theyre cancer free. I don't know if it ever goes away like the thought never goes away that at the next appointment, they can tell me I have a week to live. So that's a big one to handle, you know? Um, it can just change at any time. So, you always have to be prepared for that. And that's where you kind of have to manipulate your own mind, you know? (Participant 007) Participant 007 continued to share: My mental health is a little better when they give you a good diagnosis, like stable or remission, it helps. And then, the time comes like for your next appointment and then it's like a cycle. Its kind of like chemo where you're getting it, you feel horrible and then you start to feel better and then you have to get it again. It's kind of like that with the appointments, you start to feel better, and you almost forget about it and then it's time again and it just restarts that madness. Like the mental madness just makes you sick, emotionally sick. Participant 003 stated, Even during the time of remission, you always have that worry or thought in the back of your mind of not knowing if you will come out of remission again. It is something you think about every day. MENTAL HEALTH AND CANCER 33 Adapting to a New Normal All seven participants described the first few months after diagnosis as a time of significant change. This time is often referred to as adjusting to a new normal (National Cancer Institute, n.d). Cancer patients often report having many different emotions during this. (National Cancer Institute, n.d). The physical limitations participants felt because of treatments greatly impacted their time learning to adjust. So, with chemo, especially, my brain was there, but my body was not. So that was very hard to realize, like, I couldn't do what I was doing, you know, the [parent] thing and it's hard to tell your kids, I'm sorry, I can't do that. Like, [parent's] just tired, you know? And in the beginning, it was hard for them to process that, but over time, I always say it's our new normal. (Participant 001) Participant 002 shared what it was like starting treatments quickly: It, it makes you feel really bad. I thought I felt bad before then, you know, , I felt really bad. And then I went home with the caveat that I could wear a mask the entire time I was home and not to absolutely not go anywhere. Participant 002 later stated how the adjustment at home was harder than they anticipated not being able to do as much as normal, sharing Cause you know, I do not have all the energy that I used to have. Similarly, participant 005 expressed that the hardest part mentally of diagnosis is not being able to do what they used to do physically. I wear out so easily. Ill take a shower. And had to get me a chair to sit down, cause I, I couldn't take it without being outta breath. So, you know, that's the main thing, that I noticed. I don't feel bad. Other, than I just wear out. So easy. Thats the hardest part of MENTAL HEALTH AND CANCER 34 this all. I just cant do what I used to do. I cant do many things like even cut the grass because of how quickly I wear out so easily. Participant 007 underwent major brain surgery after their brain cancer diagnosis. Since surgery, daily life looks much different and tasks that used to seem simple were now a challenge. Although these physical adaptations have been an adjustment, over time they have just learned to adjust. It is the mental aspect that remains to be the battle. I only received back 45% usage of my left side. And like, something as simple as going to the grocery store, I just melt down. Just little things. Um, there is a huge amount of impact. Um, like just walking into a grocery store, making it twice as a challenge. It's definitely the mental, the physical part I've worked through, and I've adjusted. I think I'll forever struggle with the mental thing because you know, what they've taken away won't come back. (Participant 007). Having feelings of navigating new family dynamics was also a topic shared by many of the participants. Having to learn to take a step back from being the caregiver of the family to the one being taken care of was often discussed. I'm a very type A personality and most people would tell you I'm very much the caregiver of our family. So it was, and still is very hard for me to kind of step back and relinquish that (Participant 001). Participant 001 continued to share Like, I'm the fixer, like yeah, I'm the one that's supposed to take care of everything, not people taking care of me. Career adjustments were also described as a main adjustment to daily living. And it was hard because without the money coming in from my business, we would've had to declare bankruptcy. I couldnt teach anymore during my treatments, so I had to MENTAL HEALTH AND CANCER 35 take a step back and hired a teacher to teach for me. That was very hard (Participant 002). It's just you get on Facebook, and you see everybody's got a life. I feel like I'm in a place where I'm not able to live, the way I should be living at my age. And as I said, it's like everybody's getting out, working, and doing everything. And I'm not a part of that. I'm not, I feel like I'm not growing as a person because I can't do that anymore. As I said for me, that's been the hardest battle. (Participant 004) I was in sales and marketing for 16 years prior. Now I just kind of do work with dogs, just work at my own pace and work for myself. It works. It was humbling at first but it's good. I'm just embracing the new normal. (Participant 007) Maintaining a Positive Outlook Another theme all seven participants expressed was the importance of maintaining a positive outlook. All shared that this was the most critical factor in maintaining their mental health, stating during their interviews that it is all about their attitude. Of all the themes, this was the one most often discussed throughout the interviews. The National Cancer Institute says those diagnosed with cancer often say that life has new meaning or that they look at things differently. All participants shared the same beautiful outlook of positivity and made the conscious choice of finding the good every single day. I've definitely had my woe-is-me moments, but in the very, very beginning of this journey, everyone said it's all about your attitude. And I've tried to go in with the most positive attitude I can. Like I said, I definitely have my days, but I kind of just went with the, it is what it is, this is what we have to do. I have three boys that still need their MENTAL HEALTH AND CANCER 36 [parent]. I still have sisters and nieces and nephews and my parents and grandparents, and so, you know, I'm gonna fight. (Participant 001) Participant 001 continued to share: I just wanted to be a positive light and help people, which is what I've always done. So, whether it be in the darkest of times or the brightest of times, that was kind of my goal. And since my diagnosis, I've actually had other friends that have been diagnosed with some pretty serious other cancers, but they all refer to it as we're gonna have an [001] attitude So we're all on a journey, whether it's the good one, a bad one, somewhere in between. But like I said, I'm just trying to make the best of the situation. (Participant 001) Participant 002 expressed: So, this is how I feel. I am on a bridge above like this gully and the gully goes way, way down. And at the bottom of the gully is like all the, the, the, the yuck of self-pity of oh my gosh, why did this happen to me? Ugh. Life is such. You know? I mean, it's all there. Its part of me now, but I am going to stay up on the bridge. That's, that's my goal in life. And every person has to decide how they're gonna handle it. You've gotta crawl up, you've gotta crawl up out the hole and find it. But every single person has to do it. And I'm sure everybody does it differently. I have to do it. It's almost daily that I have to listen to something uplifting. Make that choice. (Participant 002) Participant 002 also shared, And it is hard sometimes to crawl up and decide what kind of day you're gonna have. I just feel very strongly that I can decide what I'm gonna do. I can decide how I'm going to be. MENTAL HEALTH AND CANCER 37 Participant 002 also expressed how times of treatment were much harder on their mental health and the importance of working harder on their mental health using faith and positivity during this time. So, I had a, I don't even know what to call it, an area in my hospital room where I had meaningful sayings to me. I had bible verses up there and different things that could lift me up. I have always been a person who listens to things that bring me up. So, I have to work harder at my mental health during active treatment periods. I have to lift myself up. (Participant 002) Participant 003 voiced, I just try to stay positive and live each day with a positive outlook. Participant 004, Because you can live life however you want. Participant 005, Cause I always just, I never acted like anything was wrong. Like I say, whatever's gonna happen. No sense in worrying about it. It just makes you miserable if you do and thats not going to help. I can tell this one thing; you cant tell people how to feel about it but the worst thing you can do is worry about it (Participant 005). Participant 006 also expressed their feelings surrounding having faith in the journey. I have a strong faith and I've suffered other things in my life, so I kind of am like, okay, you can cry for a minute, and I'll pull up your, boots and get going. Participant 007 pointed out that despite all they have been through, they have learned to find beauty in their journey. It's like you have your moments. I'm a pretty positive person. I know this journey has built my faith, like Christian faith. But I still think my mental health is weak at times, I try and inspire others and help others through it. However, there's beauty in it. I kind of refer to cancer as a blessing at the same time because have not gone through what I've gone through, I wouldn't appreciate life the way MENTAL HEALTH AND CANCER 38 I do, and I want to see things the way I do, and it overall made me a better human. (Participant 007) The COVID-19 Pandemic The participants also shared their perceptions of the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. When discussing the COVID-19 pandemic, the participants all shared a similar experience. The participants all described the pandemic as not having an impact on their treatment plans. They also described taking some precautionary measures before COVID-19 due to being immunocompromised. However, concerns about being more vulnerable to COVID-19 and increasing these precautions were expressed, I was, I was very, very cautious (Participant 004). I didn't go out unless I had to go somewhere (Participant 004). We were careful because we knew that my immune system was compromised. So, you know, we were extra careful. We masked up every time we went out. We didn't do a lot of socializing and stuff like that. Our lives were very slim at that time (Participant 005). Participant 007 recalled, It was very isolating, and it was rough, like appointments. You couldn't take anyone with you. Though being an extremely difficult time, participant 007 also expressed some feelings of ease during that time. The pandemic was a tough time, but it did also help me in some aspects. I didn't have to go anywhere and make choices. So, that was better and there was no pressure, to perform like a normal human where I can't always. It definitely also made me more aware of it, so, I guess there was somewhat of a benefit to it too, right? Like it made you, it really made you think about what you're doing and as far as like washing your hands or like where you go and what you're touching. (Participant 007) MENTAL HEALTH AND CANCER 39 Two other participants described similar feelings surrounding the benefit the COVID-19 pandemic brought in the sense of making other individuals around them more aware of the importance of hand washing and wearing masks in public settings as a common practice. Though the COVID-19 pandemic was a tough and isolating time, now experiencing treatments in a post-pandemic world they feel a bit safer with being immunocompromised than before the COVID-19 pandemic. Mental Health Not Being Addressed in Standard of Care Participants also shared their views on whether they felt their mental health was being addressed adequately by their healthcare providers. Overall, the majority of the participants acknowledged that their mental health was not adequately addressed as part of the standard of care at any point including at the time of diagnosis, treatments, or when entering remission. The lack of mental health resources was also described by many of the participants. I dont recall mental health ever being addressed by my providers. Medical professionals never did any type of screening or asked if I needed to talk. I think it would be helpful for them to have periodic check-ins throughout treatments to ask, how are you doing? Whats going on? Or say here are some resources for you. (Participant 003) Similarly, participant 002 stated, I think there could be more of having mental checks of how you are doing and do you need more support. Participant 007 stressed the importance of mental health when battling and the impact they felt it had on their disease state. My doctors never asked, how are you really doing? And it's important. I think if your mental health is good, I notice from my journey, when I maintain positive mental health, you fight through it much easier and um, and when you're mentally wrecked it's so much MENTAL HEALTH AND CANCER 40 harder. Definitely, more outreach with healthcare professionals is needed, its crucial. Thats kind of a bucket list item of mine. I'd love to create more of an outreach where people know where to talk to people that are going on the same journey. Make it more accessible and like, you know exactly where to go, you know. (Participant 007) Similar feelings surrounding the amount of mental health resources were shared by five of seven of the participants. Two participants recounted similar experiences of getting a binder of information, but neither of them recalled it having information on their mental health. Before I had my transplant, I got like a three-ring binder on kind of what to expect. I've never looked at that since I probably should have. But nobody ever said, oh, well, you know, that's on page 10 of the three-ring binder you got. And there wasnt anything there on mental health, I don't remember anything. (Participant 002) And as far as the sending around someone who, who says, hey, how are you doing? Have you thought about listening to this? Here are some resources for you to get, I dont remember any of that. All of my stuff I just found on my own. (Participant 002) Similarly, Participant 003 shared I was given a Welcome to Oncology Packet but honestly dont know if there were any resources in there. They were never like reviewed with us or it was never said here are some resources for you. Participants 007 and 001 commented on the need for more resources for patients. Participant 007 stressed: I feel like there needs to be more resources for people that have gone through this. To help, it wrecks you, you know? So, since my first diagnosis, like, I haven't slept all night since probably 2007. I was put on disability after my brain surgery and that's very MENTAL HEALTH AND CANCER 41 humbling because I'm young, I'm just 43, and, um, I don't know, it's a very humbling and um, yeah, very psychologically damaging. For breast cancer, I was offered like the cancer services of [***], but yet it's still kind of limited, you know? I don't think there's enough (Participant 002). It is needed to have support. And just the cancer kind of community (Participant 001). Participant 004 shared that they speak with a mental health therapist but was someone they located on their own and has been a significant resource for them. I've talked to her a while though; she was not given to me as a resource from my cancer. I've been talking to her for a few years now since around the start of the pandemic. The participants described having great trust in their care team which has brought them some ease through the process. The participants shared similar views: I just have a lot of faith in my doctors. And I know a lot of people don't have that, but I, I trust them. They've been trained. and you know, you're getting treated by the best out there (Participant 004). Our doctor, we like her a lot. Awful lot. We really trust her and know we are in good hands and that makes all the difference going through this process (Participant 005). I have a really good rapport. My doctor's been by my side the whole journey. He's pretty great (Participant 007). Of the seven participants, two participants described feeling fully supported by their healthcare providers. I know that they immediately offered health resources to me. They probably had a mental health counselor in the meeting, so I knew something was kind of weird that more than one person was talking to me, and they immediately asked how I felt and did I want free counseling. (Participant 006) MENTAL HEALTH AND CANCER 42 I know I went back to a subsequent appointment, and they said, how do you feel about your cancer diagnosis (Participant 006). Participant 005 remarked My doctors were on top of it and offered the resources we needed. I know if we were to need more, I feel confident on where to go to receive them (Participant 005). Discussion The present study was conducted to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The research also aimed to understand the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Mental health illnesses such as anxiety are common in cancer patients, but often neglected, influencing quality of life, adherence to treatment, cancer survival, and treatment costs (Duggan, 2021). Previous studies have shown that mental health issues are minimized in the cancer care field (Duggan, 2021). Healthcare professionals often misidentify these mental health symptoms as normal emotional responses to a cancer diagnosis, and many patients are reporting not receiving the treatment they need (Duggan, 2021). The views and experiences the participants shared in the current study regarding their mental health support the previous research. The study reveals that participants perceived that a cancer diagnosis had a significant impact on their mental health and quality of life. All participants in this study described both the physical and emotional burden that came with a diagnosis. Participants in this study reported feeling anxious, frustrated, overwhelmed, and fearful after receiving a diagnosis and these feelings were also present during times of remission. After treatments, feelings of uncertainty about how to move forward are common, leaving feelings of anxiousness about the future (National Cancer Institute, n.d). One participant received two separate diagnoses and described their experience as very MENTAL HEALTH AND CANCER 43 traumatic, causing a form of PTSD. Five of the seven participants felt as if their mental health concerns were overlooked and not addressed adequately, and they were not receiving the support or treatment they needed. Many people with cancer feel a lack of certainty about what the future holds (National Cancer Institute, n.d). After a cancer diagnosis, many feel that their life is less secure than it once was which can lead to feelings of anxiousness, anger, and sadness (National Cancer Institute, n.d). The research study upheld this as seven participants also reported feeling uncertain and fearful about their future and expressed feelings of helplessness. This led to anxiety surrounding financial planning, estate planning, healthcare and treatment planning, and planning for the care of children and families. The urgency of treatment played a major role in the mental health of the patients. All seven participants also described being shocked and overwhelmed as their lives quickly changed. They described their entire journey as being on an emotional rollercoaster and even during times of remission they felt they were stuck in emotional limbo not knowing what each new day would bring, anxiously waiting for their next appointment. Though all the participants reported being pleased with the care they were receiving regarding treating their cancer, several participants expressed there was a major gap in care when it came to getting their mental health needs addressed throughout the process. The participants stressed the importance of maintaining their mental health when battling and the impact they felt it had on their disease state. The type of cancer and stage at which the cancer was diagnosed did not seem to make a significant difference as all seven participants reported a decline in mental health. There was a connection to the length, time, and type of treatment as longer chemotherapy treatment periods lead to a greater physical toll which was linked to a higher emotional burden on the participants. MENTAL HEALTH AND CANCER 44 These findings were consistent with previous studies showing chemotherapy, as compared to other treatments, to be associated with a higher anxiety level (Lim et al., 2011). The participants who underwent surgery also reported a higher level of anxiety and frustration as they experienced more permanent and significant physical limitations. Being capable of normal daily activities is a standard determinant when evaluating the quality of life in cancer patients (Shahidi et al., 2014). Measures of daily activities have even been suggested as potential predictors of treatment outcomes in cancer patients (Shahidi et al., 2014). Previous research examining the impact of a cancer diagnosis on daily living has shown that common symptoms such as fatigue can impair the physical functioning and quality of life of patients. For example, a study conducted by Shahidi et al. found more than 40 percent of the patients reported changes to their daily living after the diagnosis, and more than half of the participants who were employed at the time of diagnosis experienced changes in the amount or type of their paid work after being diagnosed with cancer. The experiences reported by the participants were consistent with previous studies supporting the need for care and interventions to help patients maintain the daily activities they need and like (National Cancer Institute, n.d; Shahidi et al., 2014). In addition to the physical limitations of treatment, the participants in this study expressed there are many different factors contributing to their mental health following their diagnosis. These included changes in physical appearance, illness, fatigue, family planning and support, and new challenges they face regarding their career and family responsibilities. Several participants described feelings of frustration as they were not able to perform all the daily tasks, they were able to once do before being diagnosed. Additionally, many patients reported feeling guilty or ashamed about not being able to fulfill their family responsibilities. This was especially present for the participants with young MENTAL HEALTH AND CANCER 45 children at home as they felt the family dynamic significantly changed. Many participants described having a difficult time taking a step back as the caregiver of the family and being the one taken care of. Several of the participants also underwent major career changes as a result of their diagnosis. They reported having to take time off work or go on disability due to the physical and emotional toll of cancer treatment. This affected their livelihood and way of living, adding additional anxiety and stress. The feelings of frustration and anxiety also emerged while completing daily tasks around the home. All seven participants reported not being able to complete physical tasks such as cleaning or completing outside chores due to not having enough strength and energy. This shift in daily life was often referred to as a new normal and it took an emotional and physical toll on the participants as they were learning to adapt to all these changes. Further studies are needed to better understand the nature of such interventions for cancer patients, but the perceptions shared by the participants display the critical need for more education, recognition, and evaluation of the physical and psychological problems caused by cancer and its treatment that impact normal functioning. Patients who lack a support system may be more vulnerable to mental health challenges (Harandi & Nayeri, 2017). Poor social support has been linked to depression and loneliness (Harandi & Nayeri, 2017). Social support refers to the psychological and material resources provided by a social network to help individuals cope with stress. Such social support may come in different forms including helping a patient with daily tasks, giving advice, or providing care and empathy (Harandi & Nayeri, 2017). Six of the seven participants described having strong support systems, while one reported having no one to turn to for support. All six describe it as it takes a village and having the support of family and friends has made a difference in anxiety and depression levels. Participant 006 stated, Let your inner circle and your middle circle know MENTAL HEALTH AND CANCER 46 and let them, let them take part in your healing and it's good for all of you. The one participant who reported not having a support system reported extreme feelings of loneliness which contributed to their declining mental health. Findings from studies on the impact the COVID-19 pandemic has had on cancer patients suggest that mental health during the pandemic in the cancer population may be impacted by social isolation as well as stress regarding accessing cancer treatments (Amaniera et al., 2021). The participants discussed the COVID-19 pandemic and their views regarding the pandemics impact on their mental health and disease state. All seven participants reported the pandemic did not impact their treatment plans and described taking some precautionary measures before COVID-19 due to being immunocompromised. However, concerns about being more vulnerable to COVID-19 and increasing these precautions were common themes expressed by the participants. Overall, the pandemic was referred to as a tough and more isolating time but was not described as having a significant impact on the participants mental health outside of the ever-present emotional effects they were feeling from their diagnosis. The biggest change many of the participants had to adapt to was going to their treatments alone due to restrictions, but still felt supported by their family and friends in other ways. Three participants described similar feelings about the COVID-19 pandemic as being in some ways beneficial as it made other individuals around them more aware of the importance of hand washing and wearing masks in public settings as a common practice. One participant described it as bringing a sense of ease as they didnt feel as much pressure to go outside the home and perform the day-to-day tasks that they are no longer able to perform. The participants also expressed a common theme of feeling safer in a post-pandemic world while being immunocompromised. Overall, the participants in the current study did not perceive the COVID-19 pandemic as having a significant impact on MENTAL HEALTH AND CANCER 47 their mental health in addition to the psychological symptoms they were already experiencing from treatments. Awareness by healthcare providers and an established framework to identify the need for support or resources regarding the pandemic should still be an essential element of cancer care. The findings in this study also suggest that the healthcare system can play a critical role in a patients mental health. Though some participants felt that mental health was addressed by their providers, overall, this seems to be a gap in the standard of care for oncology patients. Five of the seven participants reported their mental health not being addressed or being underaddressed immediately following diagnosis, during treatments, and during times of remission. All five participants stated they do not recall being asked about their mental health or being provided with any resources regarding mental health. Two participants recalled getting a Welcome to Oncology folder immediately following diagnosis, but do not believe there were any mental resources provided in the folder, and if so, they were never specifically reviewed. Asking patients how they have been feeling emotionally or how they have been coping with the diagnosis and treatment can be a meaningful way to start a conversation (Duggan, 2021). When a provider lets a patient know that they are available to support them can help the patient feel safe enough to open up about any issues that theyve been experiencing (Duggan, 2021). Healthcare providers should be aware of the challenges that cancer patients face and provide adequate support and resources to address their mental health needs. The findings in this study are revealing in this way, as emotional distress and mental health disorders can have profound impacts on patients, beyond their emotional and mental well-being (Duggan, 2021). Research has shown that cancer patients with mental health symptoms have poorer health outcomes. New-onset mental health diagnosis after cancer diagnosis is associated with an MENTAL HEALTH AND CANCER 48 increased risk of mortality (Benton et al., 2022) which highlights the importance of early recognition and treatment of mental health symptoms. Limitations The study has some limitations that need to be acknowledged. The methods of recruitment posed some limitations for the study. The initial plan for recruitment was to use a listserv from the American Cancer Society to include different perspectives from different regions, medical centers, genders, and different types of cancer. Since this first recruitment method was not successful in generating interested participants, the participants were recruited from the same geographic area which may cause the transferability of the results to only be relevant for individuals from a similar set of circumstances. Some participants were also treated within the same medical system, though this did not seem to make a difference in the level of care provided or with their mental health being addressed by their healthcare providers. Additionally, only three types of cancer were represented in the study (breast, leukemia, and brain), all but one of the participants in the study were women, and all were White. The limited variation among the participants made it difficult to conclude if all cancer types share the same experiences and if it limited the applicability of the findings to individuals from all genders and racial/ethnic backgrounds. Additionally, we focused on the experiences of cancer patients and did not explore the perspectives of their caregivers or healthcare providers. Limiting the diversity of experiences may overlook valuable insights from other individuals and how their experiences may intersect. Contribution to the Profession This research study aimed to uncover the challenges that patients face and the coping mechanisms they use to manage the emotional burden of cancer and be able to provide real- MENTAL HEALTH AND CANCER 49 world solutions for cancer patients. The study results demonstrated that the participants felt a significant psychological impact from their cancer diagnoses, which supports the clear need for an integrated care approach for cancer patients. The theme of positivity was shared by all seven participants reporting that the key to fighting this battle is all about ones attitude. The participants shared that having a positive outlook was the most critical factor in maintaining their mental health. For participants to remain positive throughout the process, it is important they feel supported and given the proper resources they need. Addressing their mental health needs should be part of their standard of care when starting as a new oncology patient. Since oncology physicians serve as the first line of assessment, they need to be trained to assess and address mental health concerns to provide more comprehensive care and support to their patients. Given that mental health can have an impact on patient outcomes (Gregurek et al., 2010), training oncology physicians can enable early identification and intervention to help prevent the worsening of mental health symptoms and improve overall patient well-being. The current study revealed the complexity of the patients experience and the lack of standard support felt by participants for both their emotional well-being alongside their physical health. As such, being able to recognize the interconnectedness of physical and mental health is essential to providing this care. Training clinicians can involve several approaches including educational workshops and seminars, continuing education programs, and providing oncology physicians with resources and guidelines for standard operating procedures for evaluating and addressing mental health symptoms in cancer patients. The Provider Education for Mental Health Care of Cancer Survivors (EMHCCS) Training offers a notable example of an effective training program. The is a free, web-based, interactive training program created to support health care MENTAL HEALTH AND CANCER 50 providers, improve knowledge about cancer patients mental health care, and promote recommended distress screening (Centers for Disease Control and Prevention, n.d). The training allows providers to gain the skills they need to lead conversations with their patients, recognize patient stressors and concerns, and make appropriate referrals when needed (Centers for Disease Control and Prevention, n.d). The American Psychological Association also offers an affordable, online psycho-oncology workshop to health care providers that are not familiar with the field of psycho-oncology (American Psychological Association, 2023). The goal of the workshop is to outline essential concepts in the delivery of psycho-oncology services and provide foundational knowledge about recognizing psychological symptoms and approaches to treatment (American Psychological Association, 2023). With this two-step approach of training the clinicians on the importance of health in cancer care and equipping them with the knowledge, skills, and necessary tools they need to address mental health needs, we can work towards enhancing the overall quality of care and improving patient outcomes throughout the cancer journey. Collaborative care models are also a key component in addressing the mental health needs of oncology patients. With this model, it is important to introduce and promote collaborative care teams where mental health professionals work alongside oncology teams. The Memorial Sloan Ketterings Psycho-oncology Education and Training Institute supports this collaborative care approach. The Training institute is led by the Department of Psychiatry with the goal to expand psycho-oncology training opportunities for psychiatrists, psychologists, nurses, and social workers in the oncology setting (Memorial Sloan Kettering Cancer Center, 2023). The training institute is available to all providers, even those outside the Memorial Sloan Kettering health system (Memorial Sloan Kettering Cancer Center, 2023). Establishing and training the proper multi-disciplinary care team can facilitate the creation of detailed protocols MENTAL HEALTH AND CANCER 51 outlining standard operating procedures (SOP) for psychological care post- diagnosis, during treatment, and during times of remission. For example, scheduling an appointment with a social worker immediately following diagnosis as part of their standard of oncology care would be a core aspect of the post-diagnosis SOP. There also needs to be a liaison person, such as a patientcare coordinator, trained in psycho-oncology to serve as support and guide the patients through the process. Several of the participants also reported that having someone to talk to that has gone through a similar cancer journey was a significant resource for them. They stated it is extremely helpful when you have someone you can relate to and talk about treatments and ways to cope. The National Cancer Institute research supports this, stating the number one reason patients join a support group is to be with others who have similar cancer experiences. Research shows that joining a support group improves both quality of life and survival (National Cancer Institute, n.d). It was suggested by one participant to have phone apps, dating apps, and more resources for cancer communities specifically targeting cancer patients who would like to engage with other cancer patients. Future Research This study provided insight into the perspectives of cancer patients regarding their mental health and the impact it has on daily living and the overall disease state. Though there are still many important research directions that can help our understanding of mental health in oncology. Another direction to be explored is the long-term effect of cancer on mental health. While the participants in the study received their initial diagnosis before the COVID-19 pandemic, future studies could examine the impact of cancer on mental health several years after treatment. It would also be of interest to further explore the poor health outcomes and mortality rates that MENTAL HEALTH AND CANCER 52 previous studies have linked to a decline in mental health in this patient population. Future research also needs to be done to identify additional strategies for integrating mental health into cancer care and evaluate the impact each strategy has on patient outcomes. There has been a growing recognition over the past few years that mental health needs to be more adequately addressed among cancer patients, but there are still limited studies on how to successfully integrate it into their cancer care. Conclusion This study aimed to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The research also aimed to understand the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. A qualitative approach was adopted using purposeful sampling for participant identification. This study provides important insights into the mental health needs of cancer patients. Our findings suggest that a significant proportion of patients experience anxiety, fear, frustration, and a sense of being overwhelmed, as treatments quickly started, and their lives rapidly and drastically changed. One participant reported their symptoms as a form of PTSD. The participants all expressed feelings of uncertainty and fear surrounding their futures. These symptoms were present at all stages of their cancer journey, including periods of remission, and increased during periods of longer and more intense treatment cycles. The type of treatment, specifically chemotherapy, and surgery, was also reported to have an impact on the participants mental health. The results of this study highlight the need for comprehensive mental health care that is integrated into cancer care. It also demonstrated the importance of addressing the mental MENTAL HEALTH AND CANCER 53 health needs of cancer patients throughout the entire cancer journey to improve the quality of life for cancer patients and their overall well-being. MENTAL HEALTH AND CANCER 54 References Adler, N.E., & Page, A.E. (Eds.). (2008). Cancer Care for the Whole Patient. Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US). Aubry, L. (2020, December 9). Social isolations toll on cancer patients during COVID-19. 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Quality of Life Research, 30, 19031912. https://doi.org/10.1007/s11136-021-02795-4 MENTAL HEALTH AND CANCER 62 Table 1 Participant Demographics Table Demographic Category 001 002 003 004 005 006 007 Gender Female Female Female Female Male Female Female Age 40 62 44 55 79 55 43 Race White White White White White White White Marital Status Married Married Married Single (Divorced, Widowed) Married Married Single (Divorced) Primary Language English English English English English English English Education Associate Degree Not disclosed Bachelors Degree Grade 12 Grade 12 Some College Doctorate Degree Bachelors Degree Cancer Type Breast Leukemia Brain Leukemia Leukemia Breast Breast- (2007) Brain- (2010) MENTAL HEALTH AND CANCER 63 Table 2 Theme Table Participant ID 001 002 003 005 005 Participant ID 001 Theme 1: Urgency of Treatment Page/Line Participant Quote 2. 45-47 and immediately they told me when I came back, things would move pretty quickly from there. And they did. We got back from vacation, I think on a Saturday, Monday I had my port placed, and Thursday I started my first round of chemo. 2. 66-68 My doctor called at 6 pm on a Friday and said You have leukemia. And I have reserved a bed for you down at Simon Cancer Center and so you have to go down there now. And I was like, well it's Friday. That doesn't sound right. Why don't we wait till Monday? Yeah. She was like, you, you have to go there now (p. 2, 66-68) 1. 6-10 I got sick on myself one day at work so went home not thinking much of it. Thought maybe I just had the flu or something. My youngest was three months old at the time. My friend who is a doctor urged me to go to the ER since my symptoms werent normal. In the ER, after a CT scan and, M RI they found a tumor the size of an egg. After that, things happened quickly. I was in surgery that evening to remove the tumor then started radiation and chemo treatments right away. It was all so quick. 2. 36-39 When I was first diagnosed, I had to go into the hospital and have transfusions because I was very, very low on, uh, blood. My bone marrow had really, uh, quit producing blood. So they told us at the time that had I not come in, I probably would've passed in a couple of weeks. 6. 195-198 I had gone into our family doctor, and he called me, at home and he said, I need you to get to see this specialist in that same day. I want you there in an hour. And we didn't even know where. And that's one thing he said, you do not drive. Have your wife take you. Theme 2: Emotional Overwhelm Page/Line Participant Quote 4. 35-140 So yeah, it's in the beginning it is very much a rollercoaster. I don't know how anyone can be prepared for that. It's just a lot of information in a very short amount of time that even today I still have to stop and kind of digest. And I remember in the earlier weeks waking up some days being MENTAL HEALTH AND CANCER 64 like, is this like true? Like, is this really happening to me? Like, am I, I really have to say I have cancer. Like, it was very hard in the beginning to say like the cancer word. . So, and I just remember my son reaching over and like patting my arm and telling me, mommy, it's gonna be okay at 11 years old. Everyone was making sure I taking the time to you know, heal and breathe basically. so they started Monday, they did a bone marrow biopsy. They explained what was going on because honestly, I was just in shock. 001 2. 80-81 001 5. 184-185 002 2. 80-81 002 3. 85-86 And they're like, your blood counts are so off that if, if, if we had not discovered this within a week, you would've died. 002 6. 221-222 In an out of remission does try, you know, your mental health, you're like, oh my gosh, seriously. Yeah. I totally thought I was done with this. 002 8. 286-288 003 7. 204-207 004 1. 13-15 004 3. 75-76 004 4. 137-139 005 6. 185-186 005 6. 190-194 I try to find that ability to think that things are going to go well. But then I got, re-diagnosed again and you're like, oh my gosh, are you kidding me? Seriously. The whole process was very overwhelming. Which is why the mental health aspect should be addressed periodically throughout the process. I had long hair and my hair was like thick, real thick. But that was my thing. I didn't wanna lose my hair. That, that's where I had the emotional time dealing with, was mostly my hair. Treatment this time around has been much more difficult because it's been longer and more physically fatiguing. I believe that's been more mentally trying than anything. And that's, that's where, the connecting of the emotional piece of it a little bit is. Different factors play a role, like that physical connection to people. I think because you know, when you first hear leukemia, you think it's a death sentence. You know. And so, at first, we were both very scared. We were very worried until, you know, he explained this is a rare type of leukemia and it's treatable but not curable. And uh, you're not gonna die from it. You're gonna die with it. So, MENTAL HEALTH AND CANCER 005 7. 217-220 007 1. 5-7 007 1. 7-15 Participant ID 001 003 003 003 005 65 uh, that put us on both at a little more ease, but still, we were very upset and very scared. You're not expecting to hear cancer. Youre not expecting to hear anything like that. Like I said, we got the call to go to the specialist and this is all and the same afternoon. I didnt even know what was going on. They, they send me down to the hospital to get a blood transfusion. So you know, that kind of catches you off guard. So I received my first cancer diagnosis in 2007. I was 27, stage three breast cancer. It was traumatic, um, , it just felt like a death sentence and, um, psychologically it wrecks you, I must say. Then I battled through that and then they come my brain tumor in 2010, not a metastasis at a different time. So it was a whole like reopening of that trauma, like going through it a second time. So I've been battling on that since 2010. I had, uh, brain surgery in Duke, at Duke in 2016, um, on the brain. And then I just finished chemoradiation on the brain like last year. Um, and it's, it's very traumatic. Um, it kind of causes a form of like PTSD in essence and there's very little help for that. Theme 3: Fear of the Unknown Page/Line Participant Quote 2. 69-70 So in the beginning, of course being a mom of three young kids, eleven, seven, and three, my first thing was what about my boys? 3. 75-77 Just the not knowing of what is going to happen. What is going to happen with my kids, my husband? The increased anxiety prompted us to make changes and get affairs such as the will, estate planning, and DNR in place. There was just so much to consider, and it was all happening so quickly. 4. 120-121 Even during the time of remission, you always have that worry or thought in the back of your mind of not knowing if you will come out of remission again. It is something you think about every day. 3. 88-90 No matter how was feeling, I just knew I had to keep going for my children. 2. 67-68 Once they got me in remission, I went to the oncologist every three months and then six months and then, um, nine months to keep checking my numbers. MENTAL HEALTH AND CANCER 005 007 007 Participant ID 001: 001: 001 002 66 So, we go to the specialist and we don't even know exactly who it is or what kind of doctor it was. And so the nurse I think knew, we didn't know, you know, she came and gave us a pamphlet and it said, you know, cancer and leukemia, we were just scared to death. 3. 99-10 I don't know if it ever goes away, like the thought never goes away that the next appointment they can tell me I have a week to live. So that's a big one to handle, you know? Um, it can just change at any time. So you always have to be prepared for that. And that's where you kind of have to manipulate your own mind, you know? 4. 108-113 My mental health is a little better when they give you a good diagnosis, like stable or your remission, it helps. And then, the time comes like for your next appointment and then it's like a cycle. Its kind of like chemo where you're getting it, you feel like horrible and then you start to feel better and then you have to get it again. It's kind of like that with the appointments, you start to feel better, and you almost forget about it and then it's time again and it just restarts that madness. Like the mental madness just makes you sick, emotionally sick. Theme 4: Learning to Adapt to a New Normal Page/Line Participant Quote 5. 164-166 I'm a very type A personality and most people that you would probably talk to would tell you I'm very much the caregiver of our family. So it was, it is, and still is very hard for me to kind of step back and relinquish that. 5. 166-167 Like, I'm the fixer, like yeah, I'm the one that's supposed to take care of everything, not people taking care of me. 5. 167-171 So with chemo, especially, like my brain was there, but my body was not. So that was very hard to realize, like, I couldn't do what I was doing, you know, the mommy thing and it's hard to tell your kids, I'm sorry, I can't do that. Like, mommy's just tired, you know? And in the beginning, it was hard for them to process that, but over time, I always say it's our new normal. 3. 103-104 It, it makes you feel really bad. I thought I felt bad before then, you know, , I felt really bad. And then I went home with the caveat that I could wear a mask the entire time I was home and not to absolutely not to go anywhere. 6. 198-201 MENTAL HEALTH AND CANCER 67 And it was hard because without the money coming in from my business, we would've had to declare bankruptcy. I couldnt teach anymore during my treatments, so I had to take a step back and hired a teacher to teach for me. That was very hard. Cause you know, I do not have all the energy that I used to have. Right now I am having some issues and that's battling with the loneliness. It's just you get on Facebook, and you see everybody's got a life. I I feel like I'm in a place where I'm not able to live, like the way I should be living at my age. And as I said, it's like everybody's getting out, working, and doing everything. And I'm not a part of that. I'm not, I feel like I'm not growing as a person because I can't do that anymore. As I said for me, that's been the hardest battle. 002 3. 112-114 002 12. 414 004 10. 300 004 11. 329-335 005 3-4. 108-112 I wear out so easy. Ill take a shower. And had to get to me a chair to sit down, cause I, I couldn't take it without being outta breath. So, you know, it's, that's the main thing that, that I noticed. I don't feel bad. Other, then I just wear out. So easy. Thats the hardest part of this all. I just cant do what I used to do. I cant do many things like even cut the grass because how quickly I wear out so easily. 005 5. 164-165 I've lost interest in NASCAR racing and just a lot of things I used to have interest in I don't really care about. 007 4/5. 169-176 I only received back 45% usage of my left side. And like, something as simple as going to the grocery store, like I just melt down. Just little things. Um, there a huge amount of impact I guess. Um, like I just walking into a grocery store, making it twice as a challenge. It's definitely the mental, the physical part I've worked through, and I've adjusted. I think I'll forever struggle with the mental thing because you know, what they've taken away won't come back. 007 12/13. 403-408 I was in sales and marketing for 16 years prior. Now I just kind of do work with dogs, just work at my own pace and work for myself. It works. It MENTAL HEALTH AND CANCER Participant ID 001: 68 was humbling at first but it's good. I'm just embracing the new normal. Theme 5: Maintaining a Positive Outlook Page/Line Participant Quote 7. 275-279 Ive definitely had my woe is me moments, but in the very, very beginning of this journey, everyone said it's all about your attitude. Yeah. And I've tried to go in with the most positive attitude I can. Like I said, I definitely have my days, but I kind of just went with the, it is what it is, this is what we have to do. I have three boys that still need their mom. I still have sisters and nieces and nephews and my parents and grandparents, and so, you know, I'm gonna fight. 001: 8. 297-300 001 8. 303-304 002 4. 137-139 002 5. 164-168 004 002 5.174 5. 179-182 I just wanted to be a positive light and help people, which is what I've always done. So whether it be in the darkest of times or the brightest of times, that was kind of my goal. And since my diagnosis, I've actually had other friends that have been diagnosed with some pretty serious other cancers, but they all refer to it as we're gonna have an 001 attitude . So we're all on a journey, whether it's the good one, a bad one, somewhere in between. But like I said, I'm just trying to make the best of the situation. So I had a, I don't even know what to call it, an area in my hospital room where I had meaningful sayings to me. I had bible verses up there and different things that could lift me up. I have always been a person who listens to things that bring me up. So, this is how I feel. I am on a bridge above like this gully and the gully goes way, way down. And at the bottom of the gully is like all, theee yuck of self-pity. Oh my gosh, why did this happen to me? Ugh. Life is such. You know? I mean, it's all there. It it's part of me now, but I am going to stay up on the bridge. That's, that's my goal in life. Because you can live life however you want And it is hard sometimes to crawl up and decide what kind of day you're gonna have. But every time you wake up or every time you know, it's three o'clock in the afternoon and you're going, oh man, you still have time to change what kind of day you're having. Yeah. And I just feel very MENTAL HEALTH AND CANCER 002 7. 241-243 003 6. 178-179 002 69 strongly that I can decide what I'm gonna do. I can decide how I'm going to be. So I have to work harder at my mental health during active treatment periods. I have to lift myself up. Like I said, I listen to different kinds of podcasts that lift me up. I go to, we go to church every single week. I just try to stay positive and live each day with a positive outlook. And every person has to decide how they're gonna handle it. You've gotta crawl up, you've gotta crawl up out the hole and find it. But every single person has to do it. And I'm sure everybody does it differently. I have to do it. It's almost daily that I have to listen to something uplifting. Make that choice. 005 14. 478-483 Cause I always just, I never acted like anything was wrong. Like I say, whatever's gonna happen. No sense in worrying about it. It just makes you miserable if you do and thats not going to help. (p. 3, 98-100). 005 7. 244-245 I can tell this one thing, you can't people how to feel about but the worst thing you can do is worry about it. 006 2. 67-70 I have a strong faith and I've suffered other things in my life, so I kind of am like, okay, you can cry for a minute, and I'll pull up your, your boots and get going. 006 3. 97-98 I don't let things bottle up and boil over. I'm just kind of like, take it, release it, be done with it. Move on. 007 007 Participant ID 004 However, there's beauty in it. I kind of refer to cancer as a blessing at the same time because have not gone through what I've gone through, I wouldn't appreciate life the way I do, and I want to see things the way I do, and its overall made me a better human. 3. 95-97 It's like you have your moments. I'm a pretty positive person. Like I know this journey has built my faith, like Christian faith. But I still think my mental health is weak at times, but yeah, I try and inspire others and help others through it. Theme 6: The COVID-19 Pandemic Page/Line Participant Quote 4. 174 ..I was, I was very, very cautious. 1. 23-25 MENTAL HEALTH AND CANCER 70 I didn't go out unless I had to go somewhere. We were careful because we knew that his immune system was compromised. So, you know, we were extra careful. We masked up every time we went out. We didn't do a lot of socializing and stuff like that. Our lives were very slim at that time. It was very isolating, and it was rough, like appointments. You couldn't take anyone with you. 004 005 4. 180 4. 123-127 007 5. 207-208 007 5. 206-207 The pandemic was a tough time, um, but it did also help me in some aspect. I didn't have to go anywhere and make choices. So, that was better and there was no pressure, um, to perform like a normal human where I can't always, I guess, you know? 007 7. 224-226 It definitely also made me more aware of, so, I guess there was somewhat of a benefit to it too, right? Like it made you, it really made you think about what you're doing and as far as like washing your hands or like where you go and what you're touching. Participant ID 002 Theme 7: Mental Health Not Addressed in Standard Cancer Care Page/Line Participant Quote 17. 589-590 I think there could be more of having mental checks of how you are doing and do you need more support. And leukemia is just a weird bird because you have to stay in the hospital. 003 1. 21-24 003 5. 157-163 007 8. 253-256 I dont ever recall the state of my mental health being addressed, but there was so much going on at the time I honestly just kind of ignored my mental health. Probably as a coping mechanism I dont recall mental health ever being addressed by my providers. Medical professionals never did any type of screening or asked if I needed to talk. I think it would be helpful for them to have periodic check-ins throughout treatments to ask, How are you doing, Whats going on or say here are some resources for you. Definitely more outreach with healthcare professionals is needed. Its crucial. That's kind of a bucket list item of mine. I'd love to create more of an outreach to where people know where to talk to people that are going on the same MENTAL HEALTH AND CANCER 71 journey. Make it more like accessible and like, you know exactly where to go, you know. 007 8. 263-270 They never asked, how are you really doing? Because it's important. I think if your mental health is good, you can, I notice from my journey, like when I maintain a positive mental health, you fight through it much easier and um, and when you're mentally wrecked it's so much harder. Theme 8: Amount of Mental Health Resources given by Providers Participant ID 001 Page/Line 4. 149 Participant Quote It is needed to have support. And just the cancer kind of community. 002 16. 543-545 So as far as the doctors, there was a place where you could go out and they had a bookshelf of books, but I don't think any of them were about the mental, like lifting you up. They were all about what is leukemia, that kind of thing. 002 16. 549-555 And then before I had my transplant, I got like a three-ring binder on kind of what to expect. I've never looked at that since I probably should have. And, but nobody ever said, oh, well, you know, that's on page 10 of the three-ring binder you got. And there really wasn't anything there, but mental, I don't remember anything. 002 16/17. 565-577 But as far as them sending around someone who, who says, Hey, how are you doing? Have you thought about listening to this? Here are some resources for you to get, I dont remember any of that. All of my stuff I just found on my own. 003 2. 56-58 I was given a Welcome to Oncology Packet but honestly dont know if there were any resources in there. They were never like reviewed with us or it was never said here are some resources for you. 004 5. 145-151 I talk to a mental health therapist, psychologist. I talk to her about once a week. I've talked to her a while though; she was not given to me as a resource from my cancer. I've been talking to her for a few years now since around the start of the pandemic. 007 1. 17-21 I feel like there needs to be more resources for people that have gone through this. To help you just, it, it wrecks you, you know? So, since my first diagnosis, like, I haven't slept all night since MENTAL HEALTH AND CANCER 72 probably 2007. I was put on disability after my brain surgery and that's very humbling cuz I'm young, I'm just 43 and, um, I don't know, it's a very humbling and um, yeah, very psychologically damaging. (p. 1, 17-21) 007 2. 58-60 For the breast cancer, I was offered like the cancer services of Indiana, but yet it's still kind of limited, you know? I don't think there's enough. 006 1. 10-13 I know that they immediately offered health resources to me. They probably had a mental health counselor in the meeting, so I knew something was kind of weird that there was more than one person talking to me and they immediately asked how I felt, and did I want free counseling? 006 1.18-19 005 7. 217-220 I know I went back to a subsequent appointment, and they said, how do you feel about your cancer diagnosis? My doctors were on top of it and offered the resources we needed. I know if we were to need more, I feel confident on where to go to receive them. MENTAL HEALTH AND CANCER Figure 1 Theme Concept Map *Theme most often discussed by all participants. Defined as the most critical factor in maintaining mental health. 73 MENTAL HEALTH AND CANCER 74 Appendix A Volunteer Recruitment Information This research project has been approved by the University of Indianapolis Institutional Review Board Approval Date: 10/14/2022 Approval Number: 01691 Hello all, I am reaching out today for assistance with my doctoral research project. My research is on the Mental Health Impacts of a Cancer Diagnosis, and the goal of the study is to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Past research has shown that adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer. *Please note, this research is not affiliated with the American Cancer Society, but for my own educational pursuits. What should you expect? One-time interview in person or virtually that is expected to last approximately 45 minutes, with a follow-up communication approximately 2-4 weeks after the interview to discuss the researchers interpretations about information shared. Who can participate? You may be eligible if: At least 18 years of age. Fluent in English. Diagnosed with cancer stages 1-4 of any type prior to the start of the COVID-19 pandemic. Undergoing current treatments. If you, a family member, or a friend would like to learn more about participating, please contact me by email or my cell phone number listed below. Thanks so much for your time and consideration, Madeline Naylor, MSc, CCRC Relay for Life Co-Lead, Clinical Operations Manager MENTAL HEALTH AND CANCER 75 Appendix B Study Information Sheet Informed Consent Minimal Risk UIndy Study # 01691 Study Version: 1 Study Version Date: 10/14/2022 Informed Consent Form (ICF) Version: 1 ICF Version Date: 10/14/2022 KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS ABOUT THIS RESEARCH You are being asked to participate in a research study. Study participation includes one semistructured interview that is expected to last approximately 45 minutes in length, with a follow-up communication approximately 2-4 weeks after the interview to discuss the researchers interpretations about information shared. The interview questions included in the semistructured interview may cause some individuals to become anxious or upset. You may choose not to take part in the study or skip any question that causes discomfort. You may also choose to leave the study at any time. The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Patients with cancer are at a higher risk of developing psychological disorders that impact their disease progression and overall well-being. Your participation in this study could contribute to future medical care to help oncology patients affected by mental health disorders. CONSENT TO PARTICIPATE IN RESEARCH STUDY Mental Health Impacts of a Cancer Diagnosis Study Principal Investigator (PI): Dr. Lisa Borrero UIndy Email: borrerol@uindy.edu UIndy Telephone: 317-791-5144 Madeline Naylor, MSc, and Dr. Lisa Borrero, Ph.D., FAGHE from the Department of Interprofessional Health and Aging Studies at the University of Indianapolis (UIndy) are conducting a research study. Why is this study being done? Adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer. By collecting this information, healthcare workers will better understand how patients experience their mental health after receiving a cancer diagnosis. If a clear connection exists between mental health disorders and disease progression, protocols could be created to care for these disorders more effectively as part of standard oncology care. MENTAL HEALTH AND CANCER 76 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: Semi-Structured Interview: You will be asked questions about your cancer diagnosis, mental health, daily activities, and demographics. Member Checking: Approximately 2-4 weeks after the interview, you will have the opportunity to review a detailed summary of the themes understood by the researcher to confirm or provide clarification about the accuracy of the researchers interpretations. How long will I be in the research study? Participation will take a total of about 1-2 hours. Are there any potential risks or discomforts that I can expect from this study? The questions included in the semi-structured interview may cause some individuals to become anxious or upset. You have the right to refuse to answer any questions and may ask to stop the interview at any time for any reason. Are there any potential benefits if I participate? There is no direct benefit to participating in this study. We hope the knowledge gained from this study will be beneficial to society in improving our understanding of how patients experience their mental health after receiving a cancer diagnosis and the additional impact highly stressful events, like a pandemic, have on their mental health. Will information about me and my participation be kept confidential? All data, including the audio recordings, will be stored securely. The documents will be held in a secure area, and only authorized researchers and personnel working on the study will have access to the study documents. You will be assigned a study ID in lieu of your name, and all personal health information will be omitted from all study documents. If any personal health information is included during the interview, the information will be omitted during the transcription process. All recordings will be properly destroyed when no longer needed. 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. 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. MENTAL HEALTH AND CANCER 77 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 remain in the study. Whom 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 one of the researchers. Please contact: Dr. Lisa Borrero (PI) at 317-791-5144, borrerol@uindy.edu, or Madeline Naylor (CoInvestigator) at 765-438-0959, naylorm@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? If you consent to participate in this study, then you affirm that you satisfy inclusion criteria, and your consent is voluntary. You do not need to sign this, or any other document to indicate your consent. Completion of the interview indicates that you are willing to participate. MENTAL HEALTH AND CANCER 78 Appendix C Interview Guide Thank you again for your interest in this research study! The responses you provide during the interview are confidential and will be used for this study only. The results will be disseminated through a scholarly paper and or/ journal article. All identifying information will be removed. The purpose of this interview is to explore your views on how mental health impacts a cancer diagnosis. The study aims to identify the role of mental health in cancer outcomes. Participation in this interview will help researchers better understand the role mental health plays and how to incorporate this information when considering well-rounded cancer treatments. Your participation in the interview is entirely voluntary, and I expect the interview time frame to be 45 minutes to one hour. It is your choice whether to answer a question. You may choose to skip it entirely without consequence. You also may choose to terminate the interview at any time for any reason without consequence. Do you have any questions about the interview or how the information will be used? To ensure your words are accurately represented during the interpretation of data, this interview will be recorded. As mentioned previously, audio recordings will be used for this project only and kept confidential. Is it okay for me to start the audio recorder? [Wait for response] Okay, I have started the recording, and we will begin. 1. Will you share your experience of receiving your cancer diagnosis? 2. How would you describe your mental health as it is right now? a. Has your mood or mental health impacted your cancer treatments? 3. Can you describe how the state of your mental health has changed since receiving your cancer diagnosis? MENTAL HEALTH AND CANCER 79 4. To whom and in what contexts do you feel comfortable talking about your mental health? 5. Can you explain how your cancer diagnosis impacts your daily life? 6. How do you feel about the changes that have been brought about by Covid-19? a. Have they had any impact on your mental health or well-being? b. Has the pandemic meant that you have any worries for the future? 7. Is there anything else you want me to know, or feel is important that you have not yet shared? Demographics Section To finish the interview, can I collect a few questions about your background and demographics? 1. Background/Demographic Questions: a. How old are you? b. With what gender do you identify? c. How do you describe your ethnic background? d. What is your educational background? e. What is your marital status? f. What is your occupation? I want to thank you so much for your time with this interview. Your cooperation is valued. I can be reached at naylorm@uindy.edu with any questions or concerns about your participation in our study. MENTAL HEALTH AND CANCER 80 Appendix D Approval Letter APPROVAL LETTER To: Apostolova, Liana Protocol #: 17956 Protocol Title: Mental Health Impacts of a Cancer Diagnosis Type of Submission: Initial Level of Review: Exempt Approval Date: Friday, January 20th, 2023 Expiration Date: no date provided. *If Expiration Date = "No date provided," this research does not require annual renewal; thus, there is no expiration date. The HRPP approved the above-referenced submission. The conduct of this study is subject to the HRPP Policies, as applicable. Additional Notes: This research is exempt under the following category: Category 2(ii) Documents approved with this submission: Study Information Sheet Informed Consent Naylor 01691 (3).pdf Data Collection Instrument InterviewGuide_06.26.2022.pdf You should retain a copy of this letter and all associated approved study documents in your research records. If you have any questions or require further information, please contact the HRPP via email. or via phone at (317) 274-8289.  ...

... Effects of bimanual activity inclusion with treatment after distal radius fracture 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: Pamela M Metzer, OTR, CHT Copyright June 22, 2023 By: Pamela M Metzer, OTR, CHT All rights reserved Approved by: Lucinda Dale, EdD, OTR, CHT, FAOTA Committee Chair ______________________________ Elizabeth S. Moore, PhD Committee Member ______________________________ Erin K. Peterson, DHSc, OTR, CHT 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 ______________________________ EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 1 Effect of Bimanual Activity Inclusion with Treatment After Distal Radius Fractures Pamela M Metzer Department of Interprofessional Health and Aging Studies, University of Indianapolis Author Note We have no known conflicts to disclose. Jennifer Vasquez, OTR, CHT, assisted with data collection at the Conroe and Willis Select Physical Therapy clinic. Select Physical Therapy allowed clinicians to perform the study during work hours. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 2 Abstract Background: A distal radius fracture (DRF) requires immobilization, affecting functional skills, strength, and bimanual activities at one-to-two years post-injury. This research design added bimanual activity to a standard occupational therapy (OT) treatment protocol and home exercise program (HEP) to increase the speed of bimanual activity and improve functional skills for patients with open reduction with internal fixation (ORIF) after a DRF. Methods: This quasi-experimental study used a single-group pretest-posttest design of individuals with DRF requiring ORIF. A HEP with 10 minutes of bimanual activity was added to a standard OT treatment protocol and performed twice daily. Primary outcome measures were the Michigan Hand Outcome Questionnaire (MHQ) and the Purdue Pegboard Test (PPT). Results: The participants showed a statistically significant change in the overall MHQ ADL and total MHQ scores (p < .001) and all domains except for work performance and aesthetics. Based on the pre-established minimally clinically important difference of 13-point change, there was a clinically relevant change in the majority of the MHQ measurements. Participants showed statistically significant improvement (p < .001) with large effect size (1.50) for the PPT bimanual assembly peg placement. Discussion: Participants demonstrated improvements in bimanual activities, pain, and functional skills as measured with the MHQ after adding bimanual activities to the OT treatment. The statistically significant changes in the PPT scores showed improved hand dexterity and bimanual skills with increased speed. Large effect size for bimanual assembly confirmed clinical improvement in bimanual tasks within a 4- to 5-week time frame after ORIF. Keywords: bimanual test, bimanual assessments, fine motor coordination, upper extremity assessment, clinical assessment, function, avoidance. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 3 Acknowledgement As I finish this doctorate project, I still find it difficult to call it my study. So many others spent extended time keeping me on target and supporting me. All the University of Indianapolis professors who supported me through the class work, long distance education and shared their knowledge were invaluable. I would like to thank Dr Laura Santurri for assisting me with scheduling of course work with registrations, changes in curriculum and extensions to complete this doctorate. I also want to thank Dr. Yvvone Wakeford who took extra time and meetings to help guide me through the IRB process and negotiate agreements between Uindy and Select Physical Therapy to allow me to perform my study. She went above and beyond to assist me with getting agreements between these two organizations that allowed me to move forward. I would also like to acknowledge those who supported me at Select Physical Therapy. Jennifer Vasquez, OTR, CHT who helped me to collect data from numerous clinics and ensure that the test administration and clinical treatment were consistent between the participants. Also, Kathy DeFazio LPT, clinic manager, and Molly Hudson, OTR, CHT who supported me through the study process with patient recruitment and treatment time to collect data. Finally, to the Select Physical Therapy organization for allowing me to perform the study in their clinics and use some work time to perform the testing. More importantly I would like to acknowledge my committee. Dr Erin Peterson who was instrumental in facilitating me in organizing my clinical knowledge and research to express the information accurately and in a cohesive format. She routinely challenged me to rethink my approach to presenting information and challenged my presentation of all the information as my technical expert. Also, Dr. Elizabeth Moore has been a constant support and encourager from my first Research Methods class. She did not waver in her belief that I could complete this doctorate EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 4 even when I expressed concern about my limited ability to understand statistics. She guided me through all the data analysis and interpretation of the results with a calm approach when I could not see the end of the tunnel or comprehend what the data was saying. Her patience with my speed of comprehending the necessary statistics was so appreciated. Most of all I would like to thank my committee chairman, Dr. Lucinda Dale. Without her constant support, guidance, corrections, readings, and phone conversations I would not have been able to complete this doctorate. Her incredible knowledge of hand therapy, research and writing approaches has made it possible for me to move forward with her constant guidance, corrections, and interactions. She has been my anchor through the storms with delays, coronavirus 2019, approval committees and rewrites. Without her support I would never have reached the end of this project. My many thanks for her compassion and understanding throughout this process. Finally, I would like to thank my family for all their support. My son Sean for volunteering to be a volunteer subject, hand model and IT&S support which helped me through the technical issues of my paper and study. My daughter Sarah for being a constant believer in my ability to complete the doctorate and as editor of the paper throughout the process. But mostly to Gary, my husband, who has helped as a volunteer subject, foot model, supply recruiter, IT&S support, editor, and constant encourager. He has stayed positive and helpful through years of changed schedules, rewriting, and readings. Without his support and sacrifice I would never have completed this doctorate. Thank you again to all who supported and guided me through this journey. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 5 Table of Contents Abstract 2 Acknowledgement 3 Literature Review 11 Bimanual Hand Function 11 Distal Radius Fractures 14 Description 14 Medical intervention 15 Impact on Occupational Performance 17 Consequences of Immobilization 20 Occupational Therapy Assessment for DRF 23 Occupational Therapy Interventions for DRF 25 Purpose of the Study Method 26 27 Study Design 27 Participants 27 Sample Size Instruments 28 28 Michigan Hand Outcomes Questionnaire 28 Purdue Pegboard Test 30 Procedure Institutional Review Board 32 32 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 6 Researcher Training 32 Intervention 34 Informed Consent 36 Data Collection 36 Data Management 37 Data Analysis 38 Results 39 Michigan Hand Questionnaire 40 Purdue Pegboard Test 40 Discussion 40 Dexterity and Hand Avoidance 41 Pain 42 Function 43 Work Performance 45 Aesthetics 46 Contribution to the Field 47 Study limitations 48 Recommendations 49 Conclusion 49 References 51 Appendix A 70 Appendix B 71 Appendix C 74 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 7 Appendix D 80 Appendix E 83 Appendix F 86 Appendix G 91 Appendix H 92 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 8 List of Tables Table 1 Interrater Reliability Intraclass Coefficients for Michigan Hand Outcomes Questionnaire Table 2 Interrater Reliability Intraclass Coefficient for the Purdue Pegboard Assessment Table 3 66 Number of Participants Who Met the Threshold for Meaningful Change on the Michigan Hand Outcomes Questionnaire a (N = 16) Table 5 65 Comparison of Pretreatment and Posttreatment Michigan Hand Outcomes Questionnaire Scores (N = 16) Table 4 64 67 Comparison of Pretreatment and Posttreatment Purdue Pegboard Scores (N = 16) 69 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 9 Effect of Bimanual Activity Inclusion with Treatment After Distal Radius Fractures Bimanual hand function is a complex and highly coordinated skill requiring both hands in concert, with each hand performing a different motion, such as tying shoelaces (Cooper, 2014; Kantak et al., 2017; Kimmerle et al., 2003). Bimanual activities often require dexterity that involves the integration of visual feedback, proprioception, and equalization of force and pressure to control the smooth interaction of the hands when performing small, coordinated motions (Bobos et al., 2018a; Coats & Wann, 2012; Jaric et al., 2005; McPhee, 1987). The loss of routine, pain-free motion, and proprioception reduce the ability of the hands to move in separate and alternating movements during coordinated bimanual activities (Karagiannopoulos et al., 2013; Kimmerle et al., 2003; Krehbiel et al., 2017). These impairments limit the ability to perform daily self-care, household, and work-related activities required for individuals to maintain their functional independence and quality of life (Dekkers & Nielsen, 2011; Jaric et al., 2005; Karagiannopoulos et al., 2013; Kimmerle et al., 2003; Krehbiel et al., 2017). A distal radius fracture (DRF) is the most commonly occurring upper extremity (UE) orthopedic injury, routinely requiring medical treatment with immobilization following closed reduction or open reduction with internal fixation (ORIF) (Cooper, 2014; Gogna et al., 2013; Karagiannopoulos et al., 2013; Meena et al., 2014; Smith et al., 2004; Valdes, 2009). This immobilization leads to subsequent weakness, stiffness, pain, and sensory loss in the wrist and hand (Dilek et al., 2018; Karagiannopoulos et al., 2013; Lvgren & Hellstrm, 2012; Nielsen & Dekkers, 2013). Several researchers have reported that individuals immobilized for DRF often avoided the use of the affected hand due to pain, stiffness, sensory loss, and fear of reinjury (Bobos et al., 2018a; Handoll & Elliott, 2015; Lvgren & Hellstrm, 2012; Nielsen & Dekkers, 2013). Yang et al. (2018) noted that limited range of motion (ROM) for wrist extension, full EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 10 finger flexion for composite fist, and thumb opposition had the strongest connection to changes in Disability of the Arm, Shoulder, and Hand (DASH) overall functional scores over time. The researchers expressed a concern that the loss of the combined wrist extension and ulnar deviation affected the individuals occupational, household, and sporting activities (Yang et al., 2018). To avoid using the affected hand, individuals shifted hand function to a unilateral motion using the unaffected hand, changing two-handed tasks to a single-handed activity (Dekkers & Nielsen, 2011; Lvgren & Hellstrm, 2012; Nielsen & Dekkers, 2013). Most daily tasks require bimanual hand function (Krehbiel et al., 2017), so when modifying a two-handed task to a onehanded form, other supports, and awkward manipulations are used instead to complete a task (Lvgren & Hellstrm, 2012; Nielsen & Dekkers, 2013). Moreover, researchers found that avoiding the use of the affected hand further limited bimanual activity due to diminished interaction, coordination, and dexterity in the performance of self-care and productivity tasks at one to two years post-injury (Bobos et al., 2018a, 2018b; Nielsen & Dekkers, 2013). Decreased bimanual hand use in functional tasks supports the need for occupational therapy (OT) practitioners to assess the interaction of hands with bimanual activities during DRF rehabilitation. Currently, therapists use assessments of range of motion (ROM), edema, pain, and grip strength as their initial focus, with ROM and grip strength considered reliable predictors of function (Bobos et al., 2018a, 2018b; Bobos, Nazari, et al., 2018; Hardin, 2002). Numerous standardized assessments for measuring hand dexterity and coordination are available, but few incorporate bimanual activity (Causby et al., 2014; Hardin, 2002; Schoneveld et al., 2009). The Purdue Pegboard Test (PPT) is an established dexterity assessment tool that incorporates bilateral and bimanual tasks to determine dexterity skills (Alotaibi et al., 2009). Patient-reported outcome measures assessing functional skills have become more routinely used, with the Michigan Hand EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 11 Outcome Questionnaire (MHQ) becoming more popular with the inclusion of individual and bimanual activity sections for functional task levels (Kotsis et al., 2007). According to surveyed therapists, increasing ROM while decreasing pain and edema was the primary focus of occupational and physical therapy treatment for patients with DRF (Ikpeze et al., 2016; Michlovitz et al., 2001). However, evidence supporting a standardized established treatment protocol with specific interventions for the management of a DRF is either limited and unclear or does not incorporate bimanual activities (Bobos et al., 2018a; Handoll & Elliott, 2015; Hardin, 2002; Kimmerle et al., 2003; Michlovitz et al., 2001; Quadlbauer et al., 2020; Valdes et al., 2014). The lack of standardized OT treatment for DRF with the inclusion of bimanual activity could diminish the potential for successful outcomes, limiting improvements in functional tasks and delaying the return to daily routine or work activities (Bobos et al., 2018a; Dekkers & Nielsen, 2011; Dekkers & Soballe, 2004; Kimmerle et al., 2003; Krehbiel et al., 2017). The purpose of this study was to determine if adding bimanual activity to a standard OT treatment protocol and HEP increased the speed of bimanual activity and functional skills for patients with DRF after surgery for ORIF. The following research question was explored: For individuals with DRF requiring ORIF, does participation in a four-week standard OT treatment protocol for DRF, with the addition of a bimanual activity routine, significantly improve bimanual hand function as measured with the PPT and self-rated MHQ? Literature Review Bimanual Hand Function The principal function of both UEs is to hold and manipulate objects during ones daily routine using bimanual interaction of the hands to complete the tasks (Bailey et al., 2016; EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 12 Kilbreath & Heard, 2005; Kimmerle et al., 2003). Bimanual hand function is defined as the use of both hands in a coordinated series of motions that requires the use of visual feedback, proprioception, and equalization of force and pressure to control the action (Bobos et al., 2018a; Coats & Wann, 2012; Jaric et al., 2005; McPhee, 1987). A bimanual activity requires coordination to ensure an accurate and efficient action, with each extremity contributing a skillful motion while interacting with the other extremity using a fine spatial and temporal manner (Franz, 2003; Kantak et al., 2017). Kilbreath and Heard (2005) noted in an observational study with healthy individuals that of those activities performed, 54% were bimanual hand function, and 29.4% were unilateral hand function. Bailey et al. (2016) demonstrated that 67% of healthy UE motion was bimanual interaction. Numerous neurological theories are used to describe the bimanual activities of the hands, including the muscle synergy theory, the dynamic pattern theory, and the internal model theory (Kantak et al., 2017). In the muscle synergy theory, it is believed that a few set motion patterns combine to create multiple coordinated movement patterns for hand interaction to perform activities (d'Avella & Lacquaniti, 2013; Kantak et al., 2017). In the dynamic pattern theory, a synergistic pattern organization or motor pattern exists for specific extremity or hand movements, in which components of the motor pattern interact or cooperate to create complex behavioral patterns of motion for the extremity (Scholz, 1990). Scholz (1990) noted that coordinated hand function during an activity created transitions between observed spontaneous motion patterns due to a variable change in the speed or resistance in the interaction between the extremities. The performance of more complex patterns or learning new patterns required modifying the system's intrinsic synergistic patterns (Scholz, 1990). Kantak et al. (2017), Kelso (1983), and Scholz (1990) believed that changes in rhythmic movement from a stable to an EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 13 unstable pattern created stability or balance between spontaneous or changed movement patterns during the coordination of the hand activity. Lastly, the internal model proposes that modifying motor, cognitive, and perceptual constraints in the central cortical representation of bimanual activity helps determine the coordination between the extremities due to the task requirements and environment (Kantak et al., 2017; Yokoi et al., 2011). Sleimen-Malkoun et al. (2011) noted that the UEs develop bimanual synergy patterns that allow the limbs to act together for taskspecific processes to act as a single unit. These motor patterns were either produced spontaneously or learned when the neuro-musculoskeletal system was intact (Sleimen-Malkoun et al., 2011). All theorists agreed that coordination between the UEs depended on the task performed and the use of the UE in either symmetrical or asymmetrical motions to coordinate the bimanual activities for UE function (Howard et al., 2009; Kantak et al., 2017; Sleimen-Malkoun et al., 2011). Symmetrical bimanual actions involve simultaneous motion using homologous muscles to coordinate UE activity (Kantak et al., 2017; Sleimen-Malkoun et al., 2011). The symmetrical motions are faster than asymmetrical motions, using movements that are simpler and more stable (Howard et al., 2009; Kantak et al., 2017). Asymmetrical bimanual actions use non-homologous muscles in movement patterns (Kantak et al., 2017). Each extremity simultaneously moves the muscles in opposition, such as flexors versus extensors, to complete tasks such as screwing a nut on a bolt or applying different sequential patterns, such as tying a shoelace (Kantak et al., 2017). Asymmetrical bimanual movements are more complicated movement patterns and require more time to complete with extended preparation responses and active executions (Blinch et al., 2015; Kantak et al., 2017). The coordination between the UEs makes the motion functional and skillful, as each UE independently contributes to the action with spatial and speed adjustments through EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 14 sensorimotor integration to create a coordinated result (Bank et al., 2015; Franz, 2003; Kantak et al., 2017). A DRF has the potential to create sensory and cortical changes along with producing pain, weakness, and fear in the use of the hand. The sensorimotor integration for movement of the UE could be affected by the change in the perception of sensory information for speed and placement (Franz, 2003; Karagiannopoulos et al., 2013). The immobilization of an extremity after a DRF could change proprioception and tactile acuity creating the potential for reducing fine motor coordination, dexterity, and bimanual activity (Dilek et al., 2018; Karagiannopoulos et al., 2013; Wollstein et al., 2019). Likewise, pain, fear of reinjury, or reduced sensation can affect the function and interaction between the hands, creating the potential to avoid the injured extremity and decreasing the bimanual interaction between the UEs (Lvgren & Hellstrm, 2012). Distal Radius Fractures Description Distal radius fractures have been considered the second most common orthopedic injury and the most common UE orthopedic injury (Cooper, 2014; Corsino & Sieg, 2019; Driessens et al., 2013; Gogna et al., 2013; Karagiannopoulos et al., 2013; Meena et al., 2014; Smith et al., 2004; Valdes, 2009; Valdes et al., 2014) with the highest incidence presenting in children younger than 18 years and women 60 years and older (Gutierrez-Espinoza et al., 2017; Nielsen & Dekkers, 2013). DRFs represent 18% of fractures in individuals older than 65 years (Ikpeze et al., 2016), with most occurrences associated with a fall on an outstretched hand (Corsino & Sieg, 2019; Dewan et al., 2018; Ikpeze et al., 2016; Karagiannopoulos et al., 2013; Meena et al., 2014). Immobilization is often used during recovery, affecting long-term hand function. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 15 Medical intervention Medical interventions for DRF, including various types of immobilizations, continue to be controversial regarding the best approaches. The medical intervention for non-displaced or minimally displaced reducible fractures often includes closed reduction with the external support of either a cast or orthotic immobilization (Driessens et al., 2013; Ikpeze et al., 2016; Karagiannopoulos et al., 2013; Meena et al., 2014). However, difficulty maintaining the reduction in the cast complicates healing, resulting in re-displacement and malunions (GutierrezEspinoza et al., 2017; Karagiannopoulos et al., 2013; Meena et al., 2014; Sirni et al., 2019). More severely displaced, intra-articular, or comminuted fractures often require surgical intervention with ORIF utilizing either dorsal or volar plating with or without percutaneous pinning and supportive orthosis (Driessens et al., 2013; Gogna et al., 2013; Meena et al., 2014; Smith et al., 2004; Valdes, 2009). Kirschner wire fixation and ORIF with volar plating are the two most often performed surgical approaches to restoring the anatomical position of the wrist and hand (Karagiannopoulos et al., 2013; Meena et al., 2014; Sirni et al., 2019; Smith et al., 2004). The surgical procedure using a volar plate placement has been determined to reduce tendon irritation or rupture as the pronator quadratus is available to protect the flexor tendons (Sirni et al., 2019; Smith et al., 2004). Sirni et al. (2019) compared two groups of patients who sustained a DRF. One group received closed reduction followed by cast immobilization, and the second group underwent ORIF with volar plating. Researchers assessed wrist function at the third, sixth, 12th, and 24th months using the DASH Questionnaire and a subjective assessment of wrist function, along with ROM, grip strength, radiology results, and any complications. Results showed that radiographic parameters were better in those who received early surgery, but ROM and grip strength had only EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 16 minor differences between the groups after six months (Sirni et al., 2019). Results at 24 months showed that DASH scores had statistically significant differences for those greater than 65 years of age, who had surgery, and those placed in cast immobilization (Sirni et al., 2019). Sirni et al. (2019) noted deficits were still present in performing functional tasks for those with a cast immobilization or ORIF. Martinez-Mendez et al. (2018) compared adults with intra-articular DRF treated with closed reduction and casting to participants with volar plating ORIF. Researchers assessed participants after two years using the Patient Rated Wrist Evaluation (PRWE), DASH, pain rating, wrist ROM, grip strength, and radiological parameters (Martinez-Mendez et al., 2018). Active range of motion (AROM) for the wrist was equal in both groups, but forearm pronation and supination ROM was greater for the surgical group (Martinez-Mendez et al., 2018). Functional outcomes measured by the PRWE and DASH showed better skills with the surgical group, even though functional difficulties and pain continued after two years (Martinez-Mendez et al., 2018). Heidgerd et al. (2019) similarly performed a one-year follow-up study comparing radiographic healing rates, pain, and ROM. They determined that patients who underwent surgery with ORIF with a volar plate had a higher percentage of healing or healed fractures than those who did not receive surgery (Heidgerd et al., 2019). The surgical patients also showed statistically significant (p = .051) improvements in wrist ROM (Heidgerd et al., 2019). Mellstrand-Navarro et al. (2019) performed a systematic review regarding the treatment of DRF from 2005 to 2013. Researchers identified 19 articles that met the study criteria and performed a meta-analysis of clinical and health-economic studies on the effectiveness of DRF treatment (Mellstrand-Navarro et al., 2019). Treatment outcomes in older adults showed no differences between surgical and non-surgical approaches or the different surgical procedures EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 17 with percutaneous pinning or plating (Mellstrand-Navarro et al., 2019). Diaz-Garcia et al. (2011) and Martinez-Mendez et al. (2018) noted that the judgment for conservative or surgical intervention must be determined individually, balancing the risks and benefits and comparing the quality of life and the individuals' activities, lifestyles, and preferences. The debate regarding what type of medical intervention, when to begin mobilization, and what percentage of functional disability is acceptable long-term are still questions of concern (Koval et al., 2014). Dekkers and Nielsen (2011) found that one-year post-injury results from the DASH and Canadian Occupational Performance Measure (COPM) showed impairment in bimanual activities and tasks requiring a strong grip. Researchers need to continue to assess long-term functional outcomes for those with a DRF to determine appropriate OT intervention. Impact on Occupational Performance Changes in dexterity, sensation, and strength can affect the functional return of the injured hand. Dekkers and Nielsen (2011) performed an observational study using the COPM, DASH, and quality of life questionnaires to determine functional performance, pain, and quality of life of older women after sustaining an UE fracture. The participants reported impaired performance in self-care, productivity, and leisure activities due to diminished grip strength and coordination, which affected their ability to complete functional bilateral tasks such as opening containers, performing household activities, or gardening (Dekkers & Nielsen, 2011). The participants also had difficulty with tasks requiring two hands, such as lifting and carrying heavy items noting they replaced bimanual activities with one-handed techniques, resulting in diminished bimanual skills (Dekkers & Nielsen, 2011). In a follow-up study, Nielsen and Dekkers (2013) compared outcome measures for 37 women with a DRF receiving internal fixation with casting or casting alone. They compared EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 18 DASH and COPM scores at cast removal to scores at three months, six months, and 12 months post-injury (Nielsen & Dekkers, 2013). At 12 months, 78% of the participants noted performance problems with hygiene, dressing, and shopping (Nielsen & Dekkers, 2013). When performing productivity tasks at 12 months, 81% of the participants reported continued issues with tasks requiring greater resistance, such as household chores, gardening, and work activities (Nielsen & Dekkers, 2013). The DASH results showed that 92% of the participants had some disability 12 months after injury (Nielsen & Dekkers, 2013). Dekkers and Soballe (2004) also noted 12-month deficits in tasks requiring lifting and carrying due to pain and reduced grip strength. MacDermid et al. (2003) reported that one year after a DRF, 79% of participants had no or minimal pain or disability (n = 129). Still, 14% of the participants indicated that at one-year post-injury, mild to very severe pain and disability continued; they also reported deficits in the ability to carry weight at work and home and perform recreational activities (MacDermid et al., 2003). Bobos et al. (2018b) conducted a study using the NK Hand Dexterity Test (NKHDT), gross grip, and AROM to determine the recovery of fine motor control and dexterity for individuals after DRF. At one-year post-injury, one-third of the participants considered pain, weak grip strength, and diminished basic self-care skills as their remaining functional problems (Bobos et al., 2018b; Bobos, Nazari, et al., 2018). Researchers also noted that dexterity improved within the first three to six months following DRF due to decreased pain and increased ROM but then declined from six months to 12 months, with the affected hand not returning to its previous level of functional dexterity after one year (Bobos et al., 2018b). After two years, dexterity skills measured with the NKHDT for single-hand performance showed an improvement with large peg items but decreased with medium and small peg items. Researchers were unsure why there was a decline but expected that a loss of learned skill with the NKHDT affected the performance rate EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 19 with a decline in later studies (Bobos, Nazari, et al., 2018). Additionally, researchers discovered that grip strength had improved after two years with only a minimal difference between hands (Bobos, Nazari, et al., 2018). These long-term cohort studies provide valuable information on hand function after DRF, but most used performance tests that only measured unilateral speed of motion and did not include functional skills (Bobos et al., 2018b; Schoneveld et al., 2009). They also did not include bilateral or bimanual activities (Bobos et al., 2018b; Schoneveld et al., 2009). Immobilization often creates sensory changes, weakness, stiffness, and pain, which can contribute to the avoidance of the injured hand during functional activities with an overall decrease in function (Dekkers & Nielsen, 2011). Researchers continue to address treatment approaches, including the timing of beginning mobilization after a DRF, who should be involved, and the required treatment (Koval et al., 2014). Arora et al. (2011) acknowledged that early mobilization resulted in a faster return of function, which could be an advantage for older adults as it helped to maintain an individual's independence. Volar plate fixation allowed earlier motion starting as soon as two weeks post-injury, with participants showing a faster recovery speed and improved DASH scores (Diaz-Garcia et al., 2011; Koval et al., 2014). Researchers noted no differences in ROM, pain, PRWE, or DASH after one year (Arora et al., 2011). However, Sirni et al. (2019) noted that early mobilization could create a risk for fracture collapse or malunions. During the medical intervention for DRF with either ORIF or casting immobilization, some time is spent with the wrist immobilized, reducing the individual's ability to use the affected hand and increasing the potential for long-term sensory changes (Boersma et al., 2018; Hagert, 2010; Weibull et al., 2011). Additionally, immobilization of the wrist can reduce fine EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 20 motor coordination, dexterity, and bimanual interaction due to changes in proprioception and tactile acuity (Dilek et al., 2018; Karagiannopoulos et al., 2013). Consequences of Immobilization Sensory responses. Proprioception is a vital aspect of self-awareness and positioning of the hand and arm, allowing for the functional use of the hand and recognition of the physical body (Hagert, 2010). It uses mechanoreceptors in the ligaments that react to joint pressure, speed, and motion, along with cutaneous afferent receptors in the skin and soft tissues to facilitate sensorimotor control (Hagert, 2010; Karagiannopoulos et al., 2013). The sensory information received through the hands helps one to interpret the objects used within the environment through afferent skin receptors and proprioceptive signals (Hagert, 2010; Squeri et al., 2012). The combined information from the sensory system gives a clearer picture of the location, texture, and temperature of the objects used (Hagert, 2010). In studies regarding immobilization, healthy volunteers showed changes in skin temperature, mechanosensitivity, and thermosensitivity after four weeks of immobilization in a cast (Boersma et al., 2018; Terkelsen et al., 2008). The subjects noted pain with movement at cast removal and increased skin folding pain that lasted up to two weeks (Terkelsen et al., 2008). The sensitivity to cold and changes in skin temperature was noted to resolve after three days of mobilization following the removal of the cast (Terkelsen et al., 2008). These changes were considered inconclusive but did demonstrate a possible response for changes in blood flow in deeper structures due to the release of substance P (Terkelsen et al., 2008). Substance P is a neuropeptide that binds to the endothelium of deep blood vessels, causing vasodilation and specific changes to peripheral nociceptors during immobilization (Terkelsen et al., 2008). EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 21 Wollstein et al. (2019) noted a significant initial sensorimotor change in patients immobilized with splints for six weeks following ORIF. Their goal was to improve proprioceptive sensation in the wrist with sensory stimulation to the affected extremity utilizing activities of daily living (ADL) and proprioception activities with and without vision (Wollstein et al., 2019). At six weeks, they reported the sensory loss persisted, and the researchers believed this was due to the continued use of an immobilizing orthosis (Wollstein et al., 2019). The researchers did note a return of sensation after three months (Wollstein et al., 2019). They also reported a significant (p = .001) improvement in DASH scores at three months for those receiving proprioception exercises versus those treated in the control group (Wollstein et al., 2019). Karagiannopoulos et al. (2013) assessed light touch sensation and proprioception by comparing three groups of individuals with DRF. Researchers compared participants changes in sensation, proprioception, grip strength, and self-reported function after immobilization (Karagiannopoulos et al., 2013). Results showed that those immobilized for four to six weeks, with or without surgery, due to a DRF had a significant decrease in moving light touch sensation (p = .009) and proprioception of the wrist and hand (p < .001) compared to the control group (Karagiannopoulos et al., 2013). The researchers also noted a significant correlation (p = .01) between light touch sensation, proprioception, and PRWE scores at eight weeks (Karagiannopoulos et al., 2013). Joint proprioception and grip force were determined as clinically relevant indicators for determining functional levels (Karagiannopoulos et al., 2013). According to Squeri et al. (2012), the loss of feedback for proprioception, light touch, and force decreased the interaction between the hands with increased pain, fear of reinjury, and avoidance. The change in proprioception and tactile acuity created the potential for decreased fine motor EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 22 coordination, dexterity, and bimanual interaction after immobilization for DRF (Dilek et al., 2018, Karagiannopoulos et al., 2013). Changes in Cortical Responses. There is a commonality between changes in sensory feedback and the interpretation of sensory information with changes in cortical processing when completing a functional motion (Weibull et al., 2011). Functional magnetic resonance imaging (fMRI) studies have shown that immobilization for as few as 72 hours can create cortical and clinical effects on hand function in healthy individuals (Weibull et al., 2011). Pretest-posttest fMRI comparisons during dominant hand immobilization showed a significant cortical effect (p = .05) with a change in the interpretation of sensory information (Weibull et al., 2011). The fMRI showed increased activity in the ipsilateral somatosensory cortex area during movement with the non-dominant hand (Weibull et al., 2011). Researchers found an increase in the hemispheric cortical activity for the non-immobilized hand, noting a dominance change, as the individual used the non-dominant hand to perform all daily tasks due to the immobilization of the dominant hand (Weibull et al., 2011). Weibull et al. (2011) also found that fMRI results showed that the immobilized hand had decreased cortical motor and sensory activity compared with a pretest to posttest data. Active motion using finger tapping and the application of tactile stimulation using a pneumatically driven and electronically controlled system during fMRI provided the cortical stimulation (Weibull et al., 2011). Researchers noted an association between changes in cortical activity for motor and sensory processing with reduced grip strength, dexterity, and tactile discrimination in the immobilized hand (Weibull et al., 2011). Lissek et al. (2009) also noted that fMRI data showed hand immobilization created perceptual and cortical changes with reduced tactile acuity, but this returned to normal two to three weeks after cast removal and with the return of the immobilized hand's activity. Even so, EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 23 the tactile improvement on the healthy non-immobilized side remained superior to the formerly injured, immobilized side (Lissek et al., 2009). The fMRI studies also showed that immobilization of a hand might result in impaired tactile acuity and reduced activation of the corresponding finger representation in the sensory area of the cortex (Lissek et al., 2009). Changes in sensory information, cortical representation, and hand dominance could affect the recovery of bimanual skills, as diminished grip strength and lack of hand awareness may reduce the use of the hand in functional tasks. Therefore, it stands to reason that including targeted bimanual activities in rehabilitation after a DRF can improve sensory processing, reduce pain, and decrease hand avoidance. Occupational Therapy Assessment for DRF To promote the return of functional skills with an increase in the use of the injured hand, OT practitioners need to have a clear understanding of the injury and limitations of the client. Establishing a complete understanding of the deficits requires including measurements for pain, bimanual skills, and functional limitations. This inclusion would clarify avoidance behaviors that limit the incorporation of motion for bimanual activities and dexterity skills. Ziebart et al. (2021) identified the core measurements following a DRF as grip strength, pinch strength, and wrist ROM for the physical impairments; and functional levels with the Patient Rated Wrist and Hand Evaluation and MHQ for activity limitations. Following a systematic review, they noted that ROM for forearm supination and pronation, along with grip strength, had good reliability, validity, and responsiveness (Ziebart et al., 2021). Wrist ROM measurements showed acceptable patient responsiveness but poor reliability (Ziebart et al., 2021). The Jebsen-Taylor Hand Function Test had good responsiveness if performed in the first three months but decreased after three months (Ziebart et al., 2021). Correlations were EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 24 significant (p < .01) for grip strength, ROM, dexterity, client pain levels, and disability ratings but showed poor responsiveness if the reassessment interval was less than three months (Ziebart et al., 2021). Grice (2015) surveyed 594 occupational and physical therapists specializing in hand therapy regarding the use of occupation-based and impairment-based assessments following injuries to the hand and arm. They determined which assessments were most frequently used in their evaluations (Grice, 2015). Grice (2015) found the most commonly used occupation-based assessments included informal ADL interviews (52% with all patients), the Quick DASH (27% with all patients), and the DASH (18% with all patients). The impairment-based assessments, ranked in order of their frequency of use, were goniometry, pain, grip strength, pinch strength, edema (using circumferential measures), manual muscle testing, sensation, edema (using volumetric principles), and fine motor skills by using the PPT and Nine-Hole Peg Test (Grice, 2015). Alotaibi et al. (2009) surveyed OTs, noting that the most frequently used performance assessments in hand therapy rehabilitation were dynamometer, goniometry, pinch strength, NineHole Peg Test, Semmes-Weinstein Monofilaments, and the PPT (with 32% of patients). Dexterity assessments ranked in order of frequency of use were: PPT, Nine-Hole Peg Test, Moberg Pick-up Test, Minnesota Rate of Manipulation Test (MRM), Crawford Small Parts Dexterity Test, Bennett Hand Tool Test, and the Box and Block Test (Alotaibi et al., 2009). Of those dexterity tools used, only three contained a bimanual activity component: the PPT (Lindstrom-Hazel & Veenstra, 2015), the Crawford Small Parts Dexterity Test (Osborne & Sanders, 1956), and the Bennett Hand Tool Test (Lafayette Instrument, 2011). A dexterity test was infrequent and routinely only used in a unilateral approach measuring the speed to complete EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 25 the task, removing the bimanual component with no interplay between the hands (Alotaibi et al., 2009; Bobos et al., 2018b; Schoneveld et al., 2009). Bobos et al. (2018a) reported that "most of the literature has focused on physical impairments in hand ROM or hand grip strength as functional outcome measures after a DRF" (p. 441). Researchers found that therapists refrained from using occupation or impairment-based assessments due to time constraints, unfamiliarity with these evaluations, the evaluation's lack of availability within the clinic, and lack of reimbursement (Alotaibi et al., 2009; Grice, 2015). The therapists' refrainment included the limited use of dexterity assessments and even fewer bimanual activity assessments (Alotaibi et al., 2009; Bobos et al., 2018b; Schoneveld et al., 2009). Despite the relevance to function, it was rare to quantify bimanual activity deficits during standardized clinical assessments (Slutsky & Herman, 2005; Valdes et al., 2014). Occupational Therapy Interventions for DRF Researchers of previous studies regarding the treatment of DRF did not establish a standard OT treatment protocol for intervention, often explaining that their selection of treatment activities was determined by the patient's unique needs or the facility's standard treatment processes. Several research studies concerning available treatments after DRF showed commonalities to include pain management with modalities, manual therapy, passive range of motion (PROM), AROM/exercise, edema control, wound/scar management, joint mobilization, a home exercise program (HEP) and eventually strengthening (Brodeur-Lyons & Oakes, 2009; Bruder et al., 2012; Cooper, 2014; Handoll & Elliott, 2015; Michlovitz et al., 2001; Saunders et al., 2016; Valdes et al., 2014). Initial treatment routinely focused on edema control, protective splinting, scar management, and AROM of the digits and adjacent structures (Brodeur-Lyons & Oakes, 2009; Dilek et al., 2018; Saunders et al., 2016; Waterbury et al., 2016). As fractures EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 26 healed, therapy progressed to PROM of the wrist and fingers, strengthening, unilateral dexterity exercises, tendon gliding, and soft tissue mobilization (Brodeur-Lyons & Oakes, 2009; Dilek et al., 2018; Michlovitz et al., 2001; Saunders et al., 2016; Slutsky & Herman, 2005; Waterbury et al., 2016). The American Academy of Orthopaedic Surgeons (AAOS) (2019) recommended the early establishment of finger mobility using dexterity activities. Still, hand therapists did not routinely include these activities in the initial treatment protocols (AAOS, 2019). The mention of hand dexterity exercises for unilateral action in intervention research studies is present, but the identification of specific activities for bimanual treatment was not determined (AAOS, 2019; Bobos et al., 2018a, 2018b; Bruder et al., 2012; Handoll & Elliott, 2015). Avoidance in the use of the affected hand in functional activities and exercises that require bimanual interaction has the potential to cause a decline in functional activities for selfcare, productivity, and leisure tasks (Bobos et al., 2018b; Lvgren & Hellstrm, 2012). Unclear guidelines for assessing and managing hand dexterity with a lack of inclusion of bimanual activity after a DRF could contribute to the lack of recovery of two-handed skills (Bobos, Nazari, et al., 2018; Kimmerle et al., 2003). Purpose of the Study The slow return of bimanual hand function after a DRF due to pain, stiffness, and diminished sensation delays the return of functional activities and patient independence. The current research does not present the use of two-handed activities in the standard OT treatment protocol for individuals with DRF. By adding bimanual activity, the participant would increase their functional outcomes or improve the inclusion of the affected hand. Therefore, the purpose of this study was to determine if the addition of bimanual activity to a standard OT treatment protocol and HEP increased the speed of bimanual action and functional skills for patients with EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 27 DRF after surgery for ORIF. The research question addressed was: For individuals with DRF requiring ORIF, does participation in a 4-week standard OT treatment protocol for DRF, with the addition of a bimanual activity routine, significantly improve bimanual hand function as measured with the self-rated MHQ and the PPT? Method Study Design The focus of this study was on the addition of bimanual activity to a standard OT treatment protocol and HEP to increase the speed of bimanual activity and functional skills for patients with DRF after surgery for ORIF. A quasi-experimental study approach with a singlegroup pretest-posttest design was used. Participants were individuals who sustained a DRF requiring ORIF and were referred to outpatient therapy for OT rehabilitation. During the treatment sessions, pretest/posttest measurement data for functional and skilled tasks allowed for a more objective improvement analysis. Participants After a referral for OT, convenience sampling was used to recruit participants from one of three free-standing outpatient clinics in The Woodlands, Willis, and Conroe, Texas. Participants met the following inclusion criteria: 1. Sustained a DRF requiring surgery for ORIF. 2. 18 to 85 years of age. 3. DRF with or without accompanying hand or wrist ligament tear, metacarpal fracture, or ulna styloid fracture. 4. Ability to speak and understand English unless an interpreter who speaks and reads English is present. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 28 Exclusion criteria applied included: 1. Injury or surgical complications with peripheral nerve injury due to laceration or compression. 2. A concomitant elbow fracture or rotator cuff injury. 3. Central nervous system disorder that included residual impairments to the fracture side. 4. Cognitive disorders that affected the individuals ability to understand HEP or instructions per initial medical history screen or caregiver report. Sample Size An a priori sample size estimation was conducted using the G*Power 3.1 (Faul et al., 2007). The calculation was based on measuring a change in MHQ scores using a two-tailed paired t-test at an alpha of .05, a power of .80, and an effect size (ES) of 0.50. Based on the calculation, a minimum sample size of 34 participants was required. The sample size was increased by 20% for a final minimum sample size of 40 participants to account for possible attrition. Instruments Michigan Hand Outcomes Questionnaire The MHQ is a hand-specific outcome instrument in which individuals self-report their hand function following hand trauma, DRF, burns, hand disease, systemic illness, nerve compression, arthritis, and inflammatory conditions (Nolte et al., 2017; Shauver & Chung, 2013). The MHQ comprises six domains: overall hand function, ADL, pain, work performance, aesthetics, and patient satisfaction, with two combined calculations for overall MHQ ADL and total MHQ scores (Nolte et al., 2017; Shauver & Chung, 2013). Each domain has calculations for EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 29 functional levels with statistically significant correlations, ranging from 0.25 to 0.43, between self-assessment and score changes for all domains (Chung et al., 1999). The MHQ has normative values for healthy individuals for age and gender-adjusted populations, with scores determined for each domain, overall MHQ ADL scores, and total MHQ scores for the right upper extremity (RUE), left upper extremity (LUE) and bimanual upper extremities (BUE) (Chung et al., 1999, Nolte et al., 2017). Researchers found no differences in normative values based on age, gender, and race (Nolte et al., 2017). Nolte et al. (2017) noted that education levels for individuals who completed a college degree correlated with higher scores than those without a college degree for the total MHQ score, overall hand function, ADL, satisfaction, and work performance domains, respectively, along with a decrease in the pain domain. Functional scores for the MHQ are calculated for unilateral and bilateral activities (Shauver & Chung, 2013), with the bimanual interaction of the hands incorporated into the ADL domain. Established mathematical calculations produce scores for each domain, and combined overall MHQ ADL, and total MHQ scores for the BUE, RUE, and LUE, ranging from 0 to 100, with 100 corresponding to greater function (McMillan & Binhammer, 2009; Nolte et al., 2017). London et al. (2014) used three analysis methods to establish a minimally clinically important difference (MCID) of 13 for the total MHQ score in a study of participants with atraumatic hand conditions. The researchers noted that with hand/forearm conditions, the MCID ranged from eight to 13 for the total MHQ score (London et al., 2014). The MCID for the MHQ subscales put the range at 10.9 - 14.4 for all domains, using triangulation of three analysis methods (London et al., 2014). In more recent research, Koopman et al. (2021) determined a minimally important change (MIC) for the total MHQ score of 9.3 in patients following trigger finger release. The MIC for the MHQ domains ranged from 7.7 to 20.0, except for the aesthetics EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 30 domain (Koopman et al., 2021). Koopman et al. (2021) noted they could not determine a MIC range for aesthetics due to a low correlation with the anchor question. Due to a high ceiling effect, no discriminative ability was present for any domains on the MHQ in individuals with a DRF (Shauver & Chung, 2013). The MHQ form is available in electronic and paper formats (Nolte et al., 2017; Shauver & Chung, 2013). Each participant in this study used the paper format. License approval to use the MHQ was attained before initiating the current research. During the study, the questionnaire required approximately 15 minutes to complete. Reliability and Validity. The MHQ has good content validity and internal consistency (Schoneveld et al., 2009). Chung et al. (1998) noted the MHQ intra-class correlation coefficient (ICC) for individual domains for test-retest ranged from .81 to .97 in individuals with hand injuries or disease. Shauver and Chung (2013) noted an ICC range of .85 to .96. A calculation for internal consistency of each of the six individual domains for the bilateral and unilateral function was determined using a Cronbachs alpha, resulting in a range of .86 for the pain domain to a .97 with the ADL domain (Chung et al., 1998; Shauver & Chung, 2013). Purdue Pegboard Test The PPT (Appendix A) has four subtests and assesses unilateral, bilateral, and bimanual hand use and dexterity. Unilateral hand use is based on single-hand performance, with the client placing one peg into a column of holes at a time. The bilateral hand performance requires the patient to use both hands simultaneously to place pegs in a column without interaction between the two hands. The bimanual activity requires the interaction of both hands to perform an assembly task requiring the manipulation of four objects. To complete the unilateral and bilateral subtests, the client must place as many pegs as possible in 30 seconds for each subtest. To EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 31 complete the bimanual assembly subtest, the client must complete as many assemblies as possible in 60 seconds. Normative values for each subtest (Appendix B) have been established for individuals aged five to 89 years, stratified by age and gender (Agnew et al., 1988; Desrosiers et al., 1995; Lafayette Instrument, 2015; Lindstrom-Hazel & Veenstra, 2015). In this study, researchers used the PPT to complete one trial of each subtest, following the standardized instruction for procedures (Buddenberg & Davis, 2000; Gallus & Mathiowetz, 2003; Lafayette Instrument, 2015). The PPT subtest required an average of five to ten minutes to complete. Prior to the initiation of our study, the primary researcher and second certified hand therapist (CHT) determined that if the participants could not complete the unilateral subtest with the affected hand, the bilateral and bimanual assembly subtests would not be performed. Due to time constraints at the initial visit, the primary researcher and second CHT completed each PPT subtest only once, pretest and posttest. Reliability and Validity. The PPT is a well-known hand dexterity assessment used by health professionals with a high validity and reliability rating compared to other dexterity assessments (Causby et al., 2014; Lafayette Instrument, 2015; Lindstrom-Hazel & Veenstra, 2015). Lindstrom-Hazel & Veenstra (2015) noted the assembly subtest of the PPT had the potential to be a brief clinical assessment for BUE dexterity showing good reliability and a good correlation to daily living, vocational, and avocational tasks. The PPT showed good validity and reliability results for healthy individuals of varying ages and sex assigned at birth (Causby et al., 2014; Lindstrom-Hazel & Veenstra, 2015). The PPT test-retest reliability scores demonstrated differences between a single-trial assessment with an ICC range of .37 - .71 (Buddenberg & Davis, 2000; Lindstrom-Hazel & Veenstra, 2015) and a three-trial test with a test-retest reliability ICC of .81 - .97 (Buddenberg & Davis, 2000; Gallus & Mathiowetz, 2003; Lindstrom- EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 32 Hazel & Veenstra, 2015). Subtests of the PPT showed no consistent practice effect (Gallus & Mathiowetz, 2003). The PPT is a publicly available assessment with no license requirements for use in research. Procedure Institutional Review Board Approval was obtained from the University of Indianapolis Human Research Protections Program before participant recruitment began. A reliance agreement was established with the primary researchers work clinics on June 29, 2021, with an Institutional Review Board (IRB) identification number 01276. Approval was also obtained for managing Coronavirus Disease 2019 (COVID-19) procedures during the study through the University of Indianapolis committee in June 2021. The study was initiated in October 2021 and continued through October 2022. Adding a third clinic became necessary as the second CHT changed her schedule, which required her to split her time between the two clinics in her area. Additionally, after the volunteer session to establish interrater reliability, we believed the initial OT session would take too much time using three PPT trials. Reducing the PPT to one trial would reduce the clinic administration time and still follow the standard protocols for the assessment. On October 25, 2021, a request for modifications was submitted and approved by the University of Indianapolis IRB to include a third clinic with a change in the flier and a reduction of the PPT from three trials to one trial. Researcher Training The primary researcher and the second CHT assisting with data collection reviewed the assessment administration and scoring procedures for the MHQ and PPT. To ensure consistency, the researchers reviewed the standardized protocol for completing initial assessments, the standard OT treatment protocol, and bimanual activities for DRF. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 33 Establishing Interrater Reliability. Two volunteer training sessions were conducted to establish the ICC for reliability between the primary researcher and the second CHT for administering the MHQ and PPT. Healthy volunteers were recruited using convenience sampling through direct contact with individuals known by the primary researcher to practice the procedures used with the study participants. The study procedures and written consent forms were reviewed with each volunteer, each volunteer signed a consent form, and the witness signed the document before initiating training activities. The researchers issued an identification number to each volunteer to protect participant identification for documenting testing scores. Practice testing was performed in the gym area of the work clinic using the clinic's standard COVID-19 precautions. Each participant answered required questions regarding potential COVID-19 exposure, which was recorded upon entering the building. All participants were required to wear a mask throughout the procedure and wash their hands before performing any tasks. The primary researcher and second CHT disinfected all equipment following each use. In the first session, both researchers administered the MHQ and three trials of all four subtests of the PPT to the same individuals at separate times. It was determined for this study that an ICC >.75 would be considered an acceptable level of interrater reliability. In the initial group, the MHQ met the ICC criteria for the ADL RUE and the total MHQ score for the RUE but not for the ADL LUE or the total MHQ score of the LUE. More details provided on Table 1. ICC scores on the PPT did not meet the criteria for the RUE but did for all other subtests. More details provided on Table 2 for ICC scores. As the ICC criteria were not fully met, the primary researcher and second CHT met for a second time to review measurement procedures and administration of the tests. The primary researcher and second CHT discussed possible changes with the committee. They determined EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 34 that changes in the initial placement of the volunteer subjects hands, the start of the timers, and the need for new timers would improve consistency between the researchers. Also, there was a need to reduce interaction among the volunteers, as talking during the tests could have affected score outcomes. Due to time restraints, the PPT administration was reduced from three trials to one. The IRB approved all modifications before the initiation of the study with participants. A second practice session to establish inter-rater reliability was completed using four volunteers. Each volunteer completed one trial of each subtest on the PPT and the MHQ questionnaire with the primary researcher and second CHT. Bimanual activities and HEP log sheets were reviewed for scoring to ensure consistency in instruction for bimanual HEP activities and documentation. The ICC for the PPT test was > .75 for all subtests except for the unilateral RUE. See Table 2. The data analysis determined that an ICC > .75 was attained at both trials for the bimanual subtest. As the bimanual hand function was the priority focus, the committee approved the initiation of recruitment of participants for the primary researcher and the second CHT. Intervention Standard of Care. Researchers have not established a single standardized OT treatment protocol regarding the general treatment after a DRF, however, authors have described common elements in their interventions for this population (Brodeur-Lyons & Oakes, 2009; Bruder et al., 2012; Cooper, 2014; Handoll & Elliott, 2015; Michlovitz et al., 2001; Saunders et al., 2016; Valdes et al., 2014). Due to the lack of a standardized treatment protocol for DRF, the primary researcher consolidated three descriptions of interventions (Brodeur-Lyons & Oakes, 2009; Cooper, 2014; Saunders et al., 2016) into a standard OT treatment protocol for the study. The protocol was then reviewed and approved by four CHTs for use in the study (Appendix C). EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 35 During the study, the approved standard OT treatment protocol was performed within the OT sessions one to three times per week, depending on the participant's referral. The primary researcher and the second CHT determined the initial treatment level during the OT sessions according to the participants level of edema, AROM measurements, and post-operative time frames using industry standards with the application of the therapeutic activities. A HEP for edema control with elevation and AROM for the fingers, wrist, and elbow was started on the first day of OT treatment (Appendix D). At six weeks post-operative, strengthening activities began with the referring providers consent. Bimanual Activity. This study added 10 minutes of unbilled bimanual activities from a predetermined activity list to the participants OT intervention (Appendix E & Appendix F). The primary researcher developed the bimanual activity list using OT practitioner experience and consolidated standard treatment protocols. It was then reviewed and revised by the second CHT. The primary researcher or second CHT assigned the bimanual tasks. The 10 minutes of bimanual activities were initiated following the initial assessment, including the MHQ and PPT assessments, and performed after completing the standard OT treatment protocol at each OT session. This was to encourage performance accuracy, the progression of skill level, and understanding of the activities for the interaction between the two hands. The primary researcher and second CHT varied the bimanual activity between sessions to avoid a learned effect and encourage bimanual interaction of the hands. The primary researcher and second CHT used a predetermined level of progression to grade the bimanual activity as participants improved to facilitate the participant skill with bimanual activities. A HEP for bimanual activity was issued, at the initial visit, to the participant with instructions for assigned activity levels for completing bimanual activities twice daily. Participants completed a daily log of HEP performed, with the EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 36 logs reviewed and updated at weeks two and four. At the end of the four weeks, patients were requested to return the HEP log. Tracking participant attendance of scheduled appointments and completion of HEP sessions determined individual compliance within the program. Recruitment. Individuals with a diagnosis of DRF were identified through referrals sent by providers to three outpatient clinics. Once the patient's initial assessment scheduling was completed, the front office staff emailed pre-registration forms for medical history and DASH outcome measures as a standard clinic procedure. At the individuals initial visit, the primary researcher or second CHT at the clinic reviewed the referral and medical history form to determine if the patient met the study inclusion criteria. A more in-depth explanation of the study and a study flier (Appendix G) were given to the patient with a verbal request to participate in the study by the assessing therapist. Informed Consent Participants who agreed to be involved in the study were given more specific explanations of its benefits and purpose at the initial session with instructions that a bimanual activity program would be added to their standard OT treatment protocol and HEP without cost. Within their assigned clinics, the primary researcher and the second CHT reviewed the informed consent document before initiating the assessment, including the study's purpose, potential risks, potential benefits, study procedures, and bimanual activity. The primary researcher and second CHT then obtained written consent from the participants with a witness signature. Data Collection The primary researcher and second CHT collected data and provided OT services for enrolled participants. Demographic information and individual characteristic data were collected during the pre-intervention to determine participant eligibility based on inclusion and exclusion EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 37 criteria. The standard initial assessment was completed on the first visit for those who were eligible and consented to be in the study. The participants also completed the MHQ and PPT assessments. Data collection for the MHQ and PPT was performed at the initial assessment and then at a session four-to-five weeks post-treatment. Participants were instructed in the bimanual activities they were to perform with their HEP after completion of the initial assessment and the MHQ and PPT. They were issued an exercise tool box with objects needed for the bimanual activities and exercises. Participants received written and pictorial instructions for the bimanual exercises and HEP log sheet (Appendix E & Appendix F). The return of the HEP log was requested for collection at weeks four to five to determine the completion of daily exercises. Data Management Each participant was assigned a unique study identification number before data collection that included C, Ws, or Wd to denote the clinic site. The study identification number was used in all electronic data files to avoid the use of identifiable data. The MHQ and PPT results, the prescription, the medical history document, and the consent forms were scanned and saved in the EMR attachment file in each patients account. We stored the hard copy of consent forms, PPT scores (Appendix B), and MHQ scores in a locked file cabinet and later shredded following data analysis. The scores on the PPT score sheet and MHQ were calculated on separate Excel scoring spreadsheets, and then the scores were documented in the EMR. The HEP log sheets (Appendix H) were requested and reviewed after four weeks, with the percentage of completed sessions determined by the number of sessions performed divided by the number of sessions requested. The rate of completed HEP sessions was documented in the final Excel spreadsheet. The primary researcher extracted MHQ and PPT results from the EMR and entered the results into three Excel spreadsheets. The first Excel spreadsheet was a scoring program that EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 38 automatically calculated the MHQ score issued to the primary researcher by the University of Michigan. The second Excel spreadsheet was a data scoring program developed for this study using the PPT score sheet by the primary researcher. The third Excel spreadsheet was a consolidation sheet for all final data. At the end of four weeks, all data were transferred to the final Excel spreadsheet. Data included MHQ and PPT scores; demographic information; days post-operative treatment initiated; days post-operative AROM and PROM started; the selfreported number of HEP sessions completed; and the number of sessions scheduled and attended. Data Analysis The IBM SPSS Statistics for Windows Version 26.0 (IBM Corp., Armonk, NY) was used for all analysis. All tests were two-tailed, and a significance level of less than .05 was considered statistically significant. The normality of data was determined using the Shapiro-Wilk test and visual inspection of histograms, box plots, and Q-Q plots. Nominal data are presented as frequencies and percentages, with normally distributed interval and ratio data reported as means and standard deviations. Results that were normally distributed were compared using a paired-t test to determine if they were statistically significant for the MHQ and PPT data. The results that had non-normally distributed interval and ratio data are reported as medians and interquartile ranges and analyzed using the nonparametric Wilcoxon signed-ranks test. ICCs were conducted to determine the interrater reliability between the primary researcher and second CHT for assessments using the MHQ and PPT. Two training sessions were performed with data from six volunteers in the first session and four volunteers in the second. An ICC >.75 was considered an acceptable level of interrater reliability. The MHQ scores for the combined overall MHQ ADL and total MHQ scores were analyzed for each participant with the change in pretest-posttest scores (posttest scores minus EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 39 pretest scores) calculated and compared to London et al. (2014) 13-point established MCID. The percentage of participants who met the 13-point MCID for combined scores was determined. The six domains of the MHQ were analyzed for each participant, with the change in pretest/posttest scores calculated and compared to the London et al. (2014) established range (10.9 to 14.4). The percentage of those who met the range for each domain was also determined. Effect sizes were calculated from the PPT scores for each subtest. The calculations were conducted based on the recommendations of Cohen (1992). Effect sizes were interpreted as follows: 0.20 = small effect, 0.50 = medium effect, and 0.80 = large effect (Cohen, 1992). The primary researcher determined the compliance with the OT program by calculating the percentage of OT sessions the participant attended compared to those scheduled. The primary researcher determined compliance to the home exercise sessions by reviewing the HEP log sheets returned by the participants. Results Twenty-two individuals agreed to participate in the study; however, three discontinued due to financial issues, one declined due to anxiety issues, one moved, and one missed the reassessment, with 16 participants remaining. The remaining 16 participants had a mean (standard deviation) age of 61.31 (14.76) years. The majority (n = 15, 93.8%) of the participants were female, 12 (75%) were right-hand dominant, and 8 (50%) injured their dominant hand. Compliance with attendance at OT sessions ranged from 50% to 100%, with all but two participants having greater than 75% attendance. Nine of 16 participants returned their HEP logs for the four weeks of 10-minute exercise sessions. Of those who returned the HEP logs, three completed 100% of the sessions; three completed 98% of the sessions; one completed 91% of the sessions; one completed 88%, and one completed 86%. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 40 Michigan Hand Questionnaire There was a statistically significant improvement in the overall MHQ ADL and total MHQ scores (p < .001). There was also a statistically significant improvement (p < .001) for all domains except for the work performance, the RUE aesthetics, and the LUE aesthetics. More details are provided in Table 3. London et al. (2014) established a 13-point difference for the MCID for the combined total MHQ score and a MCID range of 10.9 to 14.4 for each of the six domains. There was significant clinical improvement in the majority of the measurements with the percentage of participants who had a clinical improvement ranging from 25% (aesthetics and satisfaction of RUE) to 100% (total MHQ score for injured LUE). Table 4 shows the number and percentage of participants who reached the MCID of 13 points. Purdue Pegboard Test Results of the comparison pretest and posttest for PPT are found in Table 5. There was a statistically significant improvement (p < .001) for the subtests of the RUE peg placement, LUE peg placement, bilateral hand peg placement, and bimanual assembly peg placement. The effect size (ES) for the bimanual assembly task was large, d = 1.50. Discussion The purpose of our study was to determine if adding bimanual activity to a standard OT treatment protocol and HEP would increase the speed of bimanual activity and functional skills for individuals who had sustained a DRF requiring ORIF. By adding bimanual activity to the standard OT treatment and HEP, we expected our participants to improve bimanual hand function and dexterity by the end of the four-week time frame. Participants significantly increased functional skills as measured by the overall MHQ ADL for the RUE and LUE and EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 41 MHQ domain of ADL with BUE. The majority of the MHQ measurements showed clinical improvement based on the London et al. (2014) established 13-point MCID. Likewise, the large ES for the bimanual assembly of the PPT confirmed clinical improvement. Dexterity and Hand Avoidance The MHQ domain of ADL BUE showed a statistically significant increase posttreatment reflecting improved performance in bimanual activities. The greatest number of participants showed a clinically important improvement, with 15/16 (93.8%) participants exceeding the MCID of 13 points (London et al.; 2014). The mean difference in pretest/posttest scores was more than two times the clinical change. The PPT posttest scores demonstrated a statistically significant increase in peg placement speed for unilateral, bilateral, and bimanual skills. The bimanual assembly task showed the greatest level of improvement with an ES of 1.50 (large effect) in pretest/posttest comparisons. The PPT and MHQ results showed that after adding bimanual activity to a standard OT treatment and HEP, our participants had increased dexterity speed and improved function during a four-week time frame. The immobilization required to protect healing bone after a DRF can reduce fine motor coordination, dexterity, and bimanual interaction (Dilek et al., 2018; Karagiannopoulos et al., 2013; Wollstein et al., 2019). Though immobilization is necessary for recovery, it reinforces the avoidance of the hand and loss of sensory feedback with splints and casts restricting the functional motion of the injured hand (Wollstein et al., 2019). Bobos et al. (2018b) found that although dexterity improved for the first six months, coordination declined six to twelve months after DRF. Bobos et al. (2018b) also indicated that men and women were still limited in functional dexterity at one and two years following a DRF. Ydreborg et al. (2015) reported that a decline after completing therapeutic intervention could occur after one year if the patient had EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 42 increased pain limiting fine motor skills. Because our participants performance was measured only within a four-to-five-week time frame, we cannot know if their improvements would be sustained. Although we did not solicit participants' views of their performance, three participants verbalized that two-handed activities reduced their fear of reinjury. Bimanual activity may have reduced avoidance of using the injured hand and prevented overuse of the uninjured hand, resulting in improved use of both hands. The decreased avoidance contrasts with Dekkers and Nielsen (2011), who noted that one week after casts were removed, individuals with UE fractures reported that two-handed tasks were routinely performed with a one-handed technique. Dekkers and Nielsen (2011) believed that continued functional deficits following unilateral UE fractures requiring cast immobilization were due to the limited change in strength and coordination. Our participants' improvement in bimanual speed and function supports incorporating more bimanual activities into OT therapeutic interventions to improve dexterity and enhance functional return. Pain The MHQ domain of pain showed a statistically significant improvement for the RUE and LUE. Clinically important improvement in pain was shown for the RUE in 5/16 (31.3%) participants and for the LUE in 7/16 (43.8%) participants. When change in pain was analyzed for the injured hand, clinically important improvement was found for the RUE for 4/6 (66.6%) participants and the LUE for 6/10 (60%) participants. This level of change supports that bimanual activities may contribute to reducing pain after ORIF for DRF. To determine the effect of pain on overall MHQ ADL and total MHQ score, pretest/posttest scores were compared according to which hand was injured. Clinically important improvement in total MHQ score was demonstrated for the injured RUE in 4/6 (66.7%) EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 43 participants and injured LUE in 10/10 (100%) participants. In contrast, 13 participants showed increased MHQ ADL scores, although three did not rate a change in pain levels and one rated increased pain in the injured hand. The improved function may support that pain levels were not the leading cause of the change in functional ability, as previously reported (Boersma et al.,2018; Dekkers and Nielsen, 2011; Terkelsen et al., 2008; Wollstein et al., 2019). Including bimanual activities in the participants OT interventions may have decreased their fear of using the extremity rather than reduced their pain, resulting in improved functional change. Other researchers have measured pain and functional disability for this population at later stages of recovery. Ydreborg et al. (2015) used a longitudinal study to assess function, pain, and disability over 24 months. Their study results noted that the expectation of pain affected disability rating scores, while the DASH scores continued to decrease over time showing improved function (Ydreborg et al., 2015). Ydreborg et al. (2015) found that though the pain decreased in the first 12 months, it would increase between 12 and 24 months with no apparent cause, while functional skills continued to improve. This continued functional improvement with increasing pain demonstrates that the pain did not prevent using the extremity. Our study supports this outcome with three participants having no change in pain levels while still improving in the overall MHQ ADL and total MHQ scores. There is a possibility that the incorporation of bimanual activities reduced the number of one-handed adaptations used with activities, thereby decreasing pain levels in the uninjured UE. Although pain levels decreased in the injured hand, there is no evidence that the injured hand's sensory awareness improved. Function The pretest/posttest comparison differences for overall MHQ ADL and total MHQ scores, and the domains of raw overall hand function and satisfaction with the RUE and LUE, EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 44 and ADL for the RUE, LUE, and BUE showed a statistically significant improvement in a fourto-five-week time frame. Participants demonstrated an overall increase in function with positive differences in each MHQ domain showing a clinically important improvement, except for the RUE raw hand function, RUE ADL, RUE and LUE pain, and RUE aesthetics. This change showed that participants experienced improved ability to use the RUE, LUE, and BUEs in daily functional tasks. DRF can cause long-lasting negative effects that can persist for one-to-two years impeding the individual's ability to perform functional tasks requiring gripping and lifting. Changes in self-care, household, and work function due to pain and immobilization during recovery can reduce sensation, mobility, dexterity, and strength in the injured hand (Dilek et al., 2018; Karagiannopoulos et al., 2013; Lvgren & Hellstrm, 2012; Martinez-Mendez et al., 2018; Nielsen & Dekkers, 2013; Sirni et al., 2019). Karagiannopoulos et al. (2013) noted that the sensory changes in light touch and proprioception, and motor impairments decreased the individual's ability to perform functional activities. By adding bimanual activity to the standard OT treatment protocol, we anticipated that the tactile stimulation and cortical use of bilateral hemispheres would improve the sensory and proprioceptive feedback, thus reducing pain levels and improving functional skills. We cannot directly compare sensory changes measured by others to the change in pain in our study. However, changes in MHQ and PPT scores could reflect the improvement in sensation required by the bimanual activity in the current study. In Dekkers and Nielsen's (2011) research, participants identified ten activities on the DASH, of which seven were bilateral tasks that were moderately or severely difficult. They noted that the functions most limited were those requiring two hands, with participants changing tasks requiring two hands to a one-handed approach (Dekkers & Nielsen, 2011). Their EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 45 participants also identified activities for cleaning, hygiene, cooking, dressing, laundry and ironing, and eating as continued problem areas at one-to-two years post-injury (Dekkers & Nielsen, 2011). After incorporating bimanual activities in OT treatment protocols, our research demonstrated a statistically significant improvement in the MHQ ADL two hands domain, with bimanual interaction showing the greatest functional improvement. The MHQ does use similar two-handed tasks as the DASH, such as opening a jar, cutting food, and carrying a grocery bag, allowing for some comparisons with our study. Our study showed participants improved their functional skills as they incorporated more bimanual tasks into their rehabilitation. Even though the participants function improved within this study, there is no evidence that functional skills would improve past the four-to-five-week time frame. Although our study showed that our participants had an improved functional ability, the limited number of participants does not allow for generalization. Our results did not include strength assessments for gripping or lifting as the OT treatment protocol established adding resistive activities in the sixth week. Three participants initiated OT past the six-week post-operative period allowing them to start at the strengthening stage. The remaining participants four-to-five-week time frame was earlier in the OT protocol, not allowing for strengthening activities, so the effect of incorporating bimanual functional skills on strength levels was not determined. Work Performance Data for the MHQ did not show a statistically significant change in the domain for work performance. The change in scores did meet the MCID 13-point change showing a clinically important improvement for 8/16 (50%) participants. The participants may have scored work performance based on employment rather than the broader-based definition of the MHQ, EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 46 including housework and school. It is noted that the MHQ work domain assesses work activities based on a four-week reflection versus the one-week time frame used in the other domains. Some participants began OT treatment closer to their post-operative date. Hence, a four-week review was impossible due to the recent injury and surgery preventing them from using the injured hand initially. The compensation of one-handed activities may have caused individuals to express a greater ability to perform functional tasks initially. Once they were farther in the healing process and using the injured hand, they may have noted more difficulties and reported increased functional deficits with work level activities and attempts to perform more involved tasks. The number of retired individuals may also have affected the scores for work performance since they had no plans to return to work. Six participants continued to work during the four-to-five-week time frame that included performing bimanual activities. These participants work sites adjusted work tasks to accommodate their injuries. Because they were working, their fears of reinjury or inability to use the injured hand were possibly reduced. Of the remaining participants, three had not returned to work, and one was a teacher on summer break. Aesthetics Participants in our study did not show a statistically significant change in the aesthetics domain for the RUE or LUE. The LUE aesthetics domain did show a clinically important improvement in the pretest/posttest difference for 7/16 (50%) participants. But the aesthetic domain score of the RUE met the clinically important improvement level for only 4/16 (25%) participants. It is unclear why the aesthetics of the affected and unaffected hands did not show a statistically significant change. Koopman et al. (2021) noted they could not determine a minimally important change for the aesthetics domain for individuals with trigger finger releases. They stated this was due to a low correlation with the anchor question and felt that the different EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 47 domains' clinical significance depended on the injury being assessed and that aesthetics were not a specific issue for their participants. In our study, the unaffected hand often did not score low in aesthetics initially, so we could not establish a marked change for this domain. Changes for the affected hand seemed to improve, but at one month, participants showed minimal differences in how they viewed their hands. Contribution to the Field Our study demonstrated that when bimanual activities are added to standard OT treatment starting in the second to tenth week postoperatively, patients with ORIF after DRF can make clinical improvements in bimanual activities, dexterity, ADL function, and pain within a four-tofive-week time frame. In contrast, other researchers all noted in longitudinal studies that clients had continued limitations in functional skills and dexterity, including two-handed tasks (Dekkers & Soballe, 2004; Nielsen & Dekkers, 2013; Yderborg et al., 2015). Their findings, in combination with ours, support the early introduction of bimanual activities after DRF. We located no studies incorporating bimanual activities in standard OT treatment protocols when reviewing the literature for this patient population. Therefore, further research into using bimanual activity for patients with DRF after ORIF is warranted. Routine assessment for bimanual activity performance by OT practitioners may increase the awareness of hand avoidance and enhance the inclusion of bimanual activities in OT treatment for this population. Alotaibi et al. (2009), Grice (2015), and Ziebart et al. (2021) all noted that bimanual testing was limited in the assessment of clients in hand clinics. The lack of assessing bimanual skills eliminates the therapists' awareness of a problem and may prevent incorporating bimanual activities with the patients rehabilitation. If the OT practitioner does not EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 48 include bimanual activity in the individuals OT session, the fear of increased pain or re-injury of their hand could cause avoidance of the hand and the delay of the recovery of strength and dexterity. Researchers acknowledge that sensory changes, fear, and pain cause the client to avoid the use of the injured hand, with a resulting long-term functional deficit (Dekkers & Nielsen, 2011; Dilek et al., 2018; Karagiannopoulos et al., 2013; Lvgren & Hellstrm, 2012; MartinezMendez et al., 2018; Nielsen & Dekkers, 2013; Sirni et al., 2019). Our results demonstrated that participants improved dexterity and hand function with bimanual activity, enhancing functional scores. This improvement in dexterity and ADL BUE scores supports the use of bimanual activity in the OT treatment of a DRF. Our study had a small sample size, so further research into the effect of bimanual activities within OT treatment with DRF requiring ORIF may improve the OT treatment protocols for future clients. Study limitations Our study showed decreased pain and improved dexterity and functional skill in a fourto-five-week time frame. However, it is unclear if the change in functional skills and pain would be sustained or increased after this time frame. Longitudinal studies are needed to confirm this patient population's long-term benefits of bimanual activity. Our design did not include a control group, nor were our participants randomized to standard care or standard care plus bimanual activities. Based on our design, we cannot know if a unilateral treatment protocol with no bimanual interaction for a DRF with ORIF would have created the same improvements in the bimanual activity we measured. Initiation of OT treatment was dependent on the referring physician, with participants beginning OT one-to-ten weeks postoperative, depending on when the physician referred. The EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 49 reassessment time also fluctuated between participants as their appointment times were not always scheduled on a specific four-week time frame. We performed all reassessments within the fourth week, with a range of four-to-five weeks for the final assessment. Varying initiation times also limited our ability to determine from this study when starting the bimanual activity would create the best improvement in functional skills. However, we believe earlier sensory and proprioceptive facilitation would benefit the patients. In future, researchers should consider when therapists start their bimanual OT activities. Compliance in our study was determined by the participants OT clinic attendance and by the completion of a HEP log. Attendance at the OT clinic sessions showed good consistency, with 88% of the participants completing 75% of the OT sessions. Not all participants completed or returned the HEP logs. Bimanual activities were used in all OT treatments, but completion of the bimanual activities by participants as a part of the HEP may have been less consistent. Recommendations Follow-up studies using a mixed methods design may be beneficial as conducting interviews with the participants may facilitate a greater understanding of their fear of using the extremity, pain, and functional abilities. Several participants expressed their views on the hand outcomes, but a more in-depth interview may have clarified functional return and fear issues. Likewise, extending the study duration to two-to-three months would have clarified outcomes beyond the four to five-week time frame and the long-term effects of the bimanual activities. Conclusion Bimanual intervention can improve the bimanual activity in individuals with a DRF requiring ORIF. Our research results demonstrated improved bimanual activities and ADL skills, EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 50 while decreasing pain after using bimanual activities. The statistically significant changes following intervention showed improved hand dexterity and bimanual skills with increased speed. Applying bimanual activities in participants' daily routines improved function. The results support incorporating bimanual activities into the OT intervention for individuals with a DRF requiring an ORIF. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 51 References Agnew, J., Golla-Wilson, K., Kawas, C. H., & Bleeker, M. L. (1988). 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StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK536916/ EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 54 d'Avella, A., & Lacquaniti, F. (2013). Control of reaching movements by muscle synergy combinations. Frontiers in Computational Neuroscience, 7(42). https://doi.org:10.3389/fncom.2013.00042 Dekkers, M. K., & Nielsen, T. L. (2011). Occupational performance, pain, and global quality of life in women with upper extremity fractures. Scandinavian Journal of Occupational Therapy, 18(3), 198-209. https://doi.org:10.3109/11038128.2010.510205 Dekkers, M. K., & Soballe, K. (2004). Activities and impairments in the early stages of rehabilitation after Colles' fracture. Disability and Rehabilitation, 26(11), 662-668. https://doi.org:10.1080/09638280410001683173 Desrosiers, J., Herbert, R., Bravo, G., & Dutil, E. (1995). The Purdue Pegboard Test: Normative data for people aged 60 and over. 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Test-retest reliability of the Purdue Pegboard for persons with multiple sclerosis. The American Journal of Occupational Therapy, 57(1), 108-111. https://doi.org:10.5014/ajot.57.1.108 Gogna, P., Selhi, H. S., Singla, R., Devgan, A., Magu, N. K., Mahindra, P., & Yamin, M. (2013). Dorsally comminuted fractures of the distal end of the radius: Osteosynthesis with volar fixed-angle locking plates. ISRN Orthopedics, 2013(131757), 1-6. https://doi.org:10.1155/2013/131757 Grice, K. O. (2015). The use of occupation-based assessments and intervention in the hand therapy setting: A survey. Journal of Hand Therapy, 28(3), 300-306. https://doi.org:10.1016/j.jht.2015.01.005 Gutierrez-Espinoza, H., Rubio-Oyarzun, D., Olguin-Huerta, C., Gutirrez-Monclus, R., PintoConcha, S., & Gana-Hervias, G. (2017). Supervised physical therapy vs. home exercise EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 56 program for patients with distal radius fracture: A single-blind randomized clinical study. 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E., van Kooij, Y. E., Selles, R. W., Slijper, H. P., Smit, J. M., van Nieuwenhoven, C. A., & Wouters, R. M., & Hand-Wrist Study Group (2021). Determining the minimally important change of the Michigan Hand Outcomes Questionnaire in patients undergoing trigger finger release. Journal of Hand Therapy. 2(58), 2-7. https://doi.org/10.1016/j.jht.2021.06.003 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 58 Kotsis, S.V., Lau, F. H., & Chung, K. C. (2007). Responsiveness of the Michigan Hand Outcomes Questionnaire and physical measurements in outcome studies of distal radius fracture treatment. Journal of Hand Surgery. 32(1), 84-90. https://doi.org:10.1016/j.jhsa.2006.10.003 Koval, K., Haidukewych, G. J., Service, B., & Zirgibel, B. J. (2014). Controversies in the management of distal radius fractures. Journal of American Academy of Orthopaedic Surgeons, 22(9), 566-575.https://doi.org:ezproxy.uindy.edu/10.5435/JAAOS-22-09-566 Krehbiel, L. M., Kang, N., & Cauraugh, J. H. (2017). 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Current Biology, 19(10), 837-842. https://doi.org:10.1016/j.cub.2009.03.065 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 59 London, D. A., Stepan, J. G., & Calfee, R. P. (2014). Determining the Michigan Hand Outcomes Questionnaire minimal clinically important difference by means of three methods. Plastic and Reconstructive Surgery, 133(3), 616-625. https://doi.org: 10.1097/PRS.0000000000000034 Lvgren, A., & Hellstrm, K. (2012). Reliability and validity of measurement and associations between disability and behavioural factors in patients with Colles' fracture. Physiotherapy Theory and Practice, 28(3), 188-197. https://doi.org:10.3109/09593985.2011.583174 MacDermid, J. C., Roth, J. H., & Richards, R. S. (2003). Pain and disability reported in the year following a distal radius fracture: A cohort study. BMC Musculoskeletal Disorders 4(1), 24. https://doi.org:10.1186/1471-2474-4-24 Martinez-Mendez, D., Lizaur-Utrilla, A., & de-Juan-Herrero, J. (2018). Intra-articular distal radius fractures in elderly patients: A randomized prospective study of casting versus volar plating. Journal of Hand Surgery, 43(2), 142-147. https://doi.org:10.1177/1753193417727139 McMillan, C. R., & Binhammer, P. A. (2009). Which outcome measure is the best? Evaluating responsiveness of the Disabilities of the Arm, Shoulder, and Hand questionnaire, the Michigan Hand Questionnaire, and the Patient-specific Functional Scale following hand and wrist surgery. Hand, 4(3), 311-318. https://doi.org:10.1007/s11552-009-9167-x McPhee, S. D. (1987). Functional hand evaluations: A review. The American Journal of Occupational Therapy, 41(3), 158-163. https://doi.org:10.5014/ajot.41.3.158 Meena, S., Sharma, P., Sambharia, A. K., & Dawar, A. (2014) Fractures of distal radius: An overview. 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Scandinavian Journal of Occupational Therapy, 20(11), 142-151. https://doi.org:10.1080/09638280410001683173 Nolte, M. T., Shauver, M. J., & Chung, K. C. (2017). Normative values of the Michigan Hand Outcomes Questionnaire for patients with and without hand conditions. Plastic Reconstructive Surgery, 140(3), 425e-433e. https://doi.org:10.1097/PRS.0000000000003581 Osborne, R. T, & Sanders, W. B. (1956). The Crawford Small Parts Dexterity Test as a timelimited test. Personnel Psychology: The Study of People at Work. https://doi.org:10.1111/j.1744-6570.1956.tb01061.x Quadlbauer, S., Pezzei, Ch., Jurkowitsch, J., Rosenauer, R., Lolmayr, B., Keuchel, T., Simon, D., Beer, T., Hausner, T., & Leixnering, M. (2020). Rehabilitation after distal radius fractures: Is there a need for immobilization and physiotherapy? Archives of Orthopaedic and Trauma Surgery, 140(5), 651-663. https://doi.org:10.1007/s00402-020-03367-w EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 61 Saunders, R. 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Acta Orthopaedica, 90(2), 123-128. https://doi.org:10.1080/17453674.2018.1561614 Sleimen-Malkoun, R., Temprado, J., Thefenne, L., & Berton, E. (2011). Bimanual training in stroke: How do coupling and symmetry-breaking matter? BioMed Central Neurology, 11(11). http://www/biomedcentral.com/1471-2377/11/11 Slutsky, D. J., & Herman, M. (2005). Rehabilitation of distal radius fractures: A biomechanical guide. Hand Clinics, 21(3), 455-468. https://doi.org:10.1016/j.hcl.2005.01.004 Smith, D. W., Brou, K. E., & Henry, M. H. (2004). Early active rehabilitation for operatively stabilized distal radius fractures. Journal of Hand Therapy, 17(1), 43-49. https://doi.org:10.1197/j.jht.2003.10.006 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 62 Squeri, V., Sciutti, A., Gori, M., Masia, L., Sandini, G., & Konczak, J. (2012). Two hands, one perception: How bimanual haptic information is combined by the brain. Journal of Neurophysiology, 107(2), 544-550. https://doi.org:10.1152/jn.00756.2010 Terkelsen, A. J., Bach, F. W., & Jensen, T. S. (2008). Experimental forearm immobilization in humans induces cold and mechanical hyperalgesia. Anesthesiology, 109(2), 297-307. https://doi.org/10.1097/ALN.0b013e31817f4c9d Valdes, K. (2009). A retrospective pilot study comparing the number of therapy visits required to regain functional wrist and forearm range of motion following volar plating of a distal radius fracture. Journal of Hand Therapy, 22(4), 312-319. https://doi.org:10.1016/j.jht.2009.06.003 Valdes, K., Naughton, N., & Michlovitz, S. (2014). Therapist supervised clinic-based therapy versus instruction in a home program following distal radius fractures: A systematic review. Journal of Hand Therapy, 27(3), 165-173. https://doi.org:10.1016/j.jht.2013.12.010 Waterbury, K., Husband, J., Callinan, N., & Reams, M. (2016). Beyond the research: An accelerated rehabilitation protocol for patients with distal radius fracture treated with open reduction internal fixation using volar locking plate, a retrospective review and comparison of outcomes with a surgeon-directed independent exercise program. Journal of Hand Therapy, 29(3), 356-384. https://doi.org:10.1016/j.jht.2014.08.023 Weibull, A., Flondell, M., Rosen, B., & Bjrkman, A. (2011). Cerebral and clinical effects of short-term hand immobilization. European Journal of Neuroscience, 33(4), 699-704. https://doi: 10.1111/j.1460-9568.2010. 07551.x EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 63 Wollstein, R., Harel, H., Lavi, I., Allon, R., & Michael, D. (2019). Post-operative treatment of distal radius fractures using sensorimotor rehabilitation. Journal of Wrist Surgery, 8(1), 2-9. https://doi.org/10.1055/s-0038-1672151 Yang, Z., Lim, P. P. H., Teo, S. H., Chen H., Qiu, H., & Pua, Y. H. (2018). Association of wrist and forearm range of motion measures with self-reported functional scores amongst patients with distal radius fractures: A longitudinal study. BMC Musculoskeletal Disorders 19(142), 1-6. https://doi.org:10.1186/s12891-018-2065-z Ydreborg, K., Engstrand, C., Steinvall, I., & Larsson, E. (2015). Hand function, experienced pain, and disability after distal radius fracture. The American Journal of Occupational Therapy,69(1), 1-7. https://dx.doi.org/10.5014/ajot2015.013102 Yeudall, L. T., Fromm, D., Reddon, R., & Stefanyk, W. O. (1986). Normative data stratified by age and sex for 12 neuropsychological tests. Journal of Clinical Psychology, 42(42), 918946. https://doi.org:10.1002/1097-4679(198611)42:6<918::AIDJCLP2270420617>3.0.CO;2-Y Yokoi, A., Hirashima, M., & Nozaki, D. (2011). Gain field encoding of the kinematics of both arms in the internal model enables flexible bimanual action. Journal of Neuroscience, 31(47), 17058-17068. https://doi.org: 10.1523/JNEUROSCI.23982-11.2011 Ziebart, C., Mehta, S. P., & MacDermid, J. (2021). Measurement properties of outcome measures used to assess physical impairments in patients after distal radius fracture: A systematic review. Physical Therapy, 101(6),1-11. https://doi.org:10.1093/ptj/pzab080 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 64 Table 1 Interrater Reliability Intraclass Coefficients for Michigan Hand Outcomes Questionnaire ADL RUE ADL LUE Total Score Total Score RUE LUE Trial 1a .89 .64 .90 .43 Trial 2b No variance 1.0 .94 .85 ADL BUE .62 No variance Note. MHQ = Michigan Hand Outcomes Questionnaire; ADL = activities of daily living; RUE = right upper extremity; LUE = left upper extremity; BUE = bilateral upper extremities. a N=6 b N=4 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 65 Table 2 Interrater Reliability Intraclass Coefficient for the Purdue Pegboard Assessment First trial with three trials for each subtest a ICC RUE LUE BUE Summation Assembly .59 .89 .89 .81 .84 Second trial with one trial for each subtest b ICC RUE LUE BUE Summation Assembly .80 .80 .70 .81 .95 Note. RUE = right upper extremity; LUE = left upper extremity; BUE = bilateral upper extremities; ICC = intraclass correlation coefficient; SEM = standard error of the measurement. a N=6 b N=4 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 66 Table 3 Comparison of Pretreatment and Posttreatment Michigan Hand Outcomes Questionnaire Scores (N = 16) Pretreatment Posttreatment Mdn IQR Mdn IQR p Raw Hand Function RUE 87.5 70.0 97.5 38.0 .011 Raw Hand Function LUE a 48.4 37.6 66.6 22.4 .001 ADL RUE 92.5 70.0 100.0 39.0 .005 ADL LUE 22.5 98.0 80.0 64.0 .002 ADL BUE a 31.7 24.6 67.0 23.2 < .001 Work performance a 30.6 22.6 43.1 30.6 .117 Pain with RUE 5.0 40.0 0 38.0 .045 Pain with LUE 92.5 70.0 100.0 39.0 .013 Aesthetics of RUE 100.0 48.4 100.0 22.4 .458 Aesthetics for LUE a 55.5 32.0 68.6 24.3 .089 Satisfaction with RUE 83.3 65.7 95.8 55.2 .041 Satisfaction with LUE 33.4 90.7 66.7 62.5 .003 Overall MHQ ADL RUE 48.8 32.1 78.9 21.0 <.001 Overall MHQ ADL LUE a 37.3 29.7 68.2 24.2 <.001 Total MHQ Score RUE 69.4 42.1 81.6 24.0 <.001 Total MHQ Score LUE a 46.4 28.0 63.7 20.2 <.001 Note: LUE = left upper extremity; ADL = activities of daily living; RUE = right upper extremity. a Reported as means, standard deviations, compared with paired t-test. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 67 Table 4 Number of Participants Who Met the Threshold for Meaningful Change on the Michigan Hand Outcomes Questionnaire a (N = 16) Domain N % Raw Hand Function RUE 7/16 43.7 Raw Hand Function LUE 10/16 62.5 ADL RUE 6/16 37.5 ADL LUE 10/16 62.5 ADL BUE 15/16 93.8 Work Performance 8/16 50.0 RUE pain 5/16 31.3 LUE pain 7/16 43.8 Aesthetics of RUE 4/16 25.0 Aesthetics of LUE 8/16 50.0 Satisfaction of RUE 4/16 25.0 Satisfaction LUE 8/16 50.0 Overall MHQ ADL RUE 13/16 81.1 Overall MHQ ADL LUE 15/16 93.8 Total MHQ score RUE 7/16 43.8 Total MHQ score LUE 11/16 68.8 Total MHQ score injured RUE 4/6 66.7 Total MHQ score injured LUE 10/10 100.0 Injured RUE pain change 4/6 66.7 Injured LUE pain change 6/10 60.0 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 68 Note: MCID = minimally clinically important difference; RUE = right upper extremity; LUE = left upper extremity; ADL = activities of daily living; BUE = bimanual upper extremity; MHQ = Michigan Hand Outcomes Questionnaire. a Meaningful change is based on the MCID established as a change in score of 13 points or greater. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 69 Table 5 Comparison of Pretreatment and Posttreatment Purdue Pegboard Scores (N=16) Pretreatment Posttreatment M SD M SD p ES b 11.50 4.00 12.50 3.00 .041 0.78 c 8.44 4.56 11.19 2.59 .007 0.78 c 7.63 4.32 9.94 1.29 .049 0.54 d 19.13 8.37 27.13 6.09 < .001 1.50 c RUE peg placement a LUE peg placement Bilateral hand peg placement Bimanual assembly peg placement Note. ES = effect size; LUE = left upper extremity; RUE = right upper extremity. a Reported as median and IQR and compared using Wilcoxon signed-ranks test. b Cohens d reported c Large effect size d Medium effect size EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 70 Appendix A Purdue Pegboard Test From Lafayette Instrument with permission for inclusion, Lafayette Instrument (2015). https://www.healthproductsforyou.com/p-lafayette-purdue-pegboard-test.html Note: Assembly tasks https://www.prohealthcareproducts.com/blog/purdue-pegboard-manual-dexterity-test EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 71 Appendix B Purdue Pegboard Score Sheet Subject record Subject study identification number ______ Preferred Hand used to eat: Right__ Left__ Both __ Test administrator: ___________________________ Date ___/____/____ Job title: ________________ Days post-injury: _______ Days post-surgery: ______ Sex assigned at birth: male ____ female ______ other _____ Age: ________ Scoring Table Based on Number of Parts Placed Hand used Right hand in 30 seconds Left hand in 30 seconds Both hands in 30 seconds Pegs placed with Right + Left + Both = summation Assembly in 60 seconds (all pieces) Trial One Trial Two Trial Three Trial Average EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 72 Quick references of means in average of parts placed for ages 15 - 40 a Gender/ hand Male Mean peg placements for age group 15-20 21-25 26-30 31-40 Preferred hand 15.56 15.44 16.22 15.35 Non-preferred hand 15.09 15.08 15.41 15.12 Both Hands 12.59 12.97 12.94 12.42 Assembly 40.25 38.89 39.13 37.50 Females 15-20 21-25 26-30 31-40 Preferred hand 16.69 16.64 17.25 15.94 Non-preferred hand 16.10 15.89 16.13 15.63 Both hands 13.76 13.75 13.31 13.13 Assembly 41.83 42.47 40.44 41.44 Note. a Data taken from the Purdue Pegboard Test Instruction Manual Table 14-22 using one trial for each person. Adapted from: Yeudall, L. T., Fromm, D., Reddon, R., & Stefanyk, W. O. (1986). Normative data stratified by age and sex for 12 neuropsychological tests. Journal of Clinical Psychology, 42(42), 918-946. https://doi.org/10.1002/1097-4679(198611)42:6<918::AID-CLP2270420617>3.0.CO;2-Y Lafayette Instrument (2015). Purdue Pegboard Test: User instructions. (Model 32020A) http://www.limef.com/downloads/MAN-32020A-forpdf-rev0.pdf EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 73 Quick references of means in average of parts placed for ages 15 - 40 a Age Group 40-49 Male 50-59 60-69 70-79 80-89 3 trial 3 trial 3 trial 3 trial 3 trial Preferred hand 14.5 14.4 13.6 13.0 10.8 Non-preferred hand 14.4 13.9 13.1 12.4 10.6 Both hands 12.2 11.9 10.9 10.4 8.5 Assembly 34.9 33.8 28.0 27.5 21.5 Females 40-49 50-59 60-69 70-79 80-89 Preferred hand 15.9 15.0 14.6 13.8 12.9 Non-preferred hand 15.2 14.4 13.9 12.9 11.3 Both hands 13.1 12.1 11.6 10.5 9.5 Assembly 39.8 34.6 31.7 29.1 21.9 Note: a Data taken from the Purdue Pegboard Test Instruction Manual Table 14-25 by Lafayette Instrument using three trials for each person. Adapted from: Agnew, J., Golla-Wilson, K., Kawas, C. H., & Bleeker, M. L. (1988). Purdue Pegboard age and sex norms for people 40 years old and older. Developmental Neuropsychology, 4(1), 29.35. https://doi.org/10.1080/87565648809540388 Lafayette Instrument (2015). Purdue Pegboard Test: User instructions. (Model 32020A) http://www.limef.com/downloads/MAN-32020A-forpdf-rev0.pdf EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 74 Appendix C Standard OT treatment protocol for distal radius fracture with ORIF Initiation week Therapeutic intervention Both volar and dorsal plates, pins, or bridging. No casting only. 2. The level of edema, AROM measurements, and post-operative time frames will be used to determine the participants initial treatment level by following the standard treatment protocol, which facilitates the selection Week 1 - S/P ORIF of the therapeutic activities applied to the participant per industry standards after their initial assessment. No balance screening? It is in normal documentation but not in wrist protocol. CRPS would not exclude as most are not determined before 2 months generally. Pain is addressed with the MHQ 1. Orthosis for protection of wrist per physicians direction. 2. Wound care. 3. Edema control with elevation above the heart for 1-2 minutes every waking hour and compression wraps. 4. Active range of motion (AROM) for shoulder flexion/extension, internal/external rotation and abduction, elbow flexion/extension, digits for tendon glides (six-pack), and fingers/thumb for joint blocks, abduction/adduction and opposition, and extensor pollicis longus (EPL) and flexor pollicis longus (FPL) glides. 5. Passive range of motion (PROM) for digits EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 75 6. Home exercise program instruction 3-5 days post-operative for elevation, AROM for shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; digits for tendon glides (six-pack); and fingers/thumb for joint blocks, abduction/adduction, and opposition; and EPL and FPL glides. 7. Education in the healing process and ADL modifications. Week 2 S/P ORIF 1. Continue orthosis for wrist support. 2. Continue wound care/ begin gentle scar management after suture removal for surrounding tissues. 3. Edema control with elevation above the heart, shoulder pumps, and compression wraps. 4. AROM in a pain-free range of all joints: AROM for shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; digits for tendon glides (six-pack); and fingers/thumb for joint blocks, abduction/adduction, and opposition; and EPL and FPL glides. 5. Gentle PROM to all fingers, including intrinsic muscle stretching exercises. Week 3 - S/P ORIF 1. Continue orthosis for wrist support with removal during the day for light activity and hygiene tasks with physicians approval. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 76 2. Continue scar management (myofascial release, silicone, otoform scar conformer, vibration). 3. Edema control with elevation above the heart, overhead shoulder pumps, isotoner glove, and compression wraps. 4. AROM in a pain-free range of all joints: shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; forearm pronation/supination; wrist flexion, extension, radial deviation, and ulnar deviation; and digits for tendon glides, abduction/adduction, and opposition; and EPL and FPL glides. 5. PROM to all fingers, thumb, wrist, and forearm. Including intrinsic muscle stretch. 6. Initiate passive and active assistive ROM (A/AROM) in a pain-free range for wrist motion with flexion, extension, radial deviation, and ulnar deviation. 7. Three-point prehension exercise for light strengthening (clothespin, therapy putty, bead in a slotted container, coin pick up). Week 4 and 5- S/P ORIF 1. Continue orthosis for wrist support with removal during the day for light activity and hygiene tasks with physicians approval. 2. Continue scar management as needed (5-10 minutes). 3. Continue edema control as needed. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 77 4. AROM in a pain-free range of all joints: shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; forearm pronation/supination; wrist flexion and extension (fisted and non-fisted hand position), and radial deviation and ulnar deviation; and digits for tendon glides, abduction/adduction and opposition; and EPL and FPL glides 5. PROM to all fingers and thumb, including intrinsic muscle stretch. 6. Continue gentle passive and A/AROM in a pain-free range for wrist and forearm motion. 7. Three-point and lateral prehension exercise (clothespin, therapy putty, bead in a slotted container, coin pick up). 8. Place and hold for wrist extension and flexion. 9. Light grip strengthening below 36# (Digi-flex, calibrated gripper). Week 6 to 8 S/P ORIF 1. Continue orthosis for wrist support with resistive activity. Begin weaning from orthosis when at home with light activities during the day. 2. Continue scar management (10 minutes). 3. AROM in a pain-free range of all joints: shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; forearm pronation/supination; wrist flexion and extension (fisted and non-fisted hand position); and EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 78 radial deviation and ulnar deviation; and digits for tendon glides, abduction/adduction and opposition; and EPL and FPL glides. 4. PROM all digits, wrist, and forearm (10 minutes). 5. Three-point and lateral prehension exercise with the progression of resistance as appropriate (clothespin, therapy putty, bead in a slotted container). 6. Light resistive exercise with 1# -2# for wrist flexion, extension, radial deviation, and ulnar deviation; and forearm pronation and supination with physician approval. 7. Initiation of grip strengthening with physician approval (Digiflex, calibrated gripper, therapy putty). Week 9-12 weeks S/P ORIF 1. Discontinue orthosis with a return to normal ADL routine. 2. PROM for digits, wrist, and forearm as needed. 3. AROM in a pain-free range of all joints: shoulder flexion/extension, internal/external rotation, and abduction; elbow flexion/extension; forearm pronation/supination; wrist flexion and extension (fisted and non-fisted hand position); and radial deviation and ulnar deviation; and digits for tendon glides, abduction/adduction and opposition; and EPL and FPL glides. 4. Three-point and lateral prehension exercise with the progression of resistance as appropriate (clothespin, therapy putty, bead in a slotted container). EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 79 5. Progressive resistive exercise for wrist flexion, extension, radial deviation, and ulnar deviation, and forearm pronation and supination. 6. Grip strengthening (Digi-flex, calibrated gripper, therapy putty). Note. The standard treatment protocol was developed by a certified hand therapist using therapy experience and consolidation of standard published protocols. It was reviewed and approved by six CHTs. Brodeur-Lyons, S., & Oakes, M. W. (2009). Its all in the hands. Distal radius fractures: Common and complicated. Rehab Management, 22(3), 18-21 Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/19449769 Cooper, C. (2014). Fundamentals of Hand Therapy: Clinical reasoning and treatment guidelines for common diagnoses of the upper extremity (2nd ed.). Elsevier Mosby. Dilek, B., Ayhan, C., Yagci, G., & Yakut, Y. (2018). Effectiveness of the graded motor imagery to improve hand function in patients with distal radius fracture: A randomized controlled trial. Journal of Hand Therapy, 31(1), 2-9. https://doi.org/10.1016/j.jht.2017.09.004 Saunders, R.J., Astifidis, R. P., Burke, S. L., Higgins, J. P., & McClinton, M. A. (2016). Hand And upper extremity rehabilitation: A practical guide (4th ed.). Elsevier. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Appendix D Home exercise sheet for distal radius fracture 80 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Home exercise program for active finger motion Repetitions ____ times/day ____ 81 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 82 Home exercise program for active wrist motion EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 83 Appendix E Bimanual activity with progression Description of activity and progressive level of difficulty Activity Level 1 1. The client uses the affected hand to pick up one coin/bead at a time, placing the items into the unaffected hand 2. Using the affected hand, the client then picks up one coin/bead using a tip pinch and places it in a covered container through a slot on the top. Level 2 1. The client uses the affected hand to pick up and palm 4 coins/beads. Coin/Bean 2. The coins/beads are transferred to the unaffected hand pick up and 3. The client then uses the affected hand in a tip pinch motion using transfer alternating fingers to pick up one coin/bead at a time from the unaffected hand and placing it into a covered container through a slot on the top Level 3 1. The client uses the affected hand to pick up and palm 4 coins/beads. 2. The coins/beads are transferred to the unaffected hand 3. The client then uses the affected hand to pick up two coins/beads palming one coin/bead and pinching the other. Then the client places one coin/bead at a time into a covered container through a slot on the top. Shoelace 1. Tie the first cross tie (no bow) of a shoelace on a shoe tying 2. Tie the first cross tie and a bow of a shoelace on a shoe. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 84 3. Lace a shoelace through the eyelets and then tie the first cross tie and a bow of a shoelace on a shoe. Level 1 Braid three strands of Macram ropes: a. thick rope b. medium thick rope c. thin rope Level 2 Braid Tie square knots using two strands of Macram ropes: Macram a. thick rope rope b. medium thick rope c. thin rope Level 3 Tie square knots using two strands using an alternating pattern a. thick rope b. medium thick rope c. thin rope Pass a ball Pass a soft, light ball from hand to hand. Change size of ball with improved grip. String pegs String medium pegs onto a string Level 1 Open 3 safety pins. Safety pins Level 2 Open then close 3 safety pins. Level 3 Open and remove 3 safety pins from a cloth. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 85 Level 4 - Place 5 open safety pins into a cloth and then close. Level 5 - Open 5 safety pins in a cloth and remove. Then replace the 5 safety pins into a cloth and close the safety pins. Level 6 - Open and close 3 diaper pins. Level 1 Dealing cards with the affected hand holding the deck Shuffling and dealing cards Level 2 Dealing cards with the affected hand dealing the cards. Level 3 Shuffling cards Level 4 Shuffling cards with a bridge Level 1 Unlink a string of 5 paper clips. Paper clips Level 2 Link a string of 5 paper clips Note. Pamela M Metzer, OTR, CHT, developed the bimanual activities protocol using occupational therapy experience and consolidated standard treatment protocol. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Appendix F Bimanual activities for home exercise program Activity Tie shoelaces Pass a ball from hand to hand Demonstration 86 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Shuffle and deal cards Pick up coins with your affected hand. Pass the coins to the unaffected hand. Using the affected hand, remove one coin at a time from the unaffected hand and place it in a container. 87 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 88 Braid Macram rope 1. Braid three strands of Macram rope: a. thin rope b. medium thick rope c. thin rope https://www.pinterest.com/pin/623748617113740973/ 2. Braid four strands of Macram ropes: a. thick rope b. medium thick rope c. thin rope https://www.pinterest.com/pin/449093394067912259/uare/1037044.html EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE 89 3. Tie square knots using four strands of Macram ropes: a. thick rope b. medium thick rope c. thin rope https://ya-webdesign.com/image/drawing-knots-sq Paper clips Unlink a string of 5 paper clips. Link a string of 5 paper clips. EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Safety pins Open 3 safety pins. Open then close 3 safety pins. Open and remove 3 safety pins from a cloth. Place 5 open safety pins into a cloth and then close. Note: Knot tying diagrams are free stock photos, retrieved from: https://www.pinterest.com/pin/449093394067912259/uare/1037044.html https://www.pinterest.com/pin/449093394067912259/uare/1037044.html https://ya-webdesign.com/image/drawing-knots-sq 90 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Appendix G Study flier for participant information 91 EFFECT OF BIMANUAL ACTIVITY AFTER RADIUS FRACTURE Appendix H Home exercise log sheet 92 Effects of Bimanual Activity Inclusion with Treatment After Distal Radius Fracture 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: Pamela M Metzer, OTR Copyright June 22, 2023 By: Pamela M. Metzer, OTR, CHT All rights reserved Approved by: Lucinda Dale, EdD, OTR, CHT, FAOTA Committee Chair ______________________________ Elizabeth S. Moore, PhD Committee Member ______________________________ Erin K. Peterson, DHSc, OTR, CHT 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 ______________________________ ______________________________  ...

... Does Physical Therapy Presentation differ according to Mechanism of Injury in Adolescents after Concussion 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: Jason A. Hugentobler, PT, DPT, SCS, CSCS Copyright June 23, 2023 By: Jason A. Hugentobler, PT, DPT, SCS, CSCS All rights reserved Approved by: Edward Jones, PT, DPT, DHSc, OCS Committee Chair ______________________________ Mark Paterno, PT, PhD, MBA, SCS, ATC Committee Member ______________________________ Catherine Quatman-Yates, PT, DPT, 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 ______________________________ PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Does Physical Therapy Presentation Differ according to Mechanism of Injury in Adolescents after Concussion Jason A. Hugentobler Department of Interprofessional Health and Aging Studies, University of Indianapolis 1 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 2 Abstract There is a high incidence of concussion in adolescents, regardless of sport participation, and may require evaluation by a physical therapist or other qualified healthcare provider. A retrospective study was performed to identify clinical differences between adolescent patients who sustained a sport-related concussion (SRC) and non-sport-related concussion (nSRC) at the time of their physical therapy evaluation. More specifically, measures of cervical spine function, postconcussion symptom severity, and quality of life measures were examined. There were 257 patients in the SRC group and 248 patients in the nSRC group between the ages of 10 and 18 years of age with mean age at the time of physical therapy being 14.75 and 15.07 years, respectively. Comparisons between the SRC and nSRC group were conducted to determine if there were statistically significant differences in cervical range of motion, headache response with cervical spine palpation, post-concussion symptom inventory (PCSI) reports, Pediatric Quality of Life scores, and other patient-specific characteristics between the groups. Demographic data between the groups did not demonstrate significant differences. Statistically significant differences were found as patients after nSRC had greater cervical spine impairments, worse scores on both PCSI and PedsQL, and had greater likelihood of presence of headache at the time of physical therapy evaluation as compared to patients with an SRC. Physical therapists can utilize this information to anticipate the examination and evaluation needs of a patient coming in for physical therapy following concussion. Keywords: concussion, adolescents, physical therapy PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Acknowledgements The opportunity to pursue my doctorate from the University of Indianapolis was a great opportunity and challenge for my personal and professional life. The completion of this entire process would not have been possible without several people in my corner that supported me throughout this process. 3 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 4 Table of Contents Title Page.1 Abstract2 Acknowledgements..3 Table of Contents.4 Chapter 1: Introduction7 Problem Statement...9 Purpose Statement and Research Objectives...9 Significance of the Study...10 Chapter 2: Literature Review.....10 Concussion Mechanism and Incidence..10 Domains of Concussion Management...12 Concussion Examination Considerations..12 Cervical Spine Examination..13 Patient-Reported Outcomes...15 Chapter 3: Methods15 Study Design..15 Participants.15 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 5 Operationalization of Variables.16 Instruments.17 Data Extraction..20 Data Analysis.22 Chapter 4: Results..23 Demographics24 Cervical Spine Measures24 Patient-Reported Outcomes...25 Mechanism as a Predictor..25 Chapter 5: Discussion ...28 Demographics28 Cervical Spine Measures...28 Patient-Reported Outcomes...31 Mechanism as a Predictor..33 Limitations.36 Conclusion.38 References..39 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 6 List of Figures and Tables Figure 1 Patient Flowchart for Study Inclusion49 Table 1 Patient Characteristics..50 Table 2 Comparisons of Cervical Spine Measures between SRC and nSRC groups51 Table 3 Comparisons of Dichotomous Cervical Spine Measures between SRC and nSRC Groups...52 Table 4 Comparisons of PCSI and PedsQL between SRC and nSRC groups..53 Table 5 Comparisons of Dichotomous Headache or Dizziness between SRC and nSRC groups.54 Table 6 SRC and nSRC as a Predictor of Cervical Spine Measures.55 Table 7 SRC and nSRC as a Predictor of PCSI and PedsQL56 Table 8 Interaction of Demographic Variables with SRC and nSRC as a Predictor of Cervical Spine Measures..57 Table 9 Interaction of Demographic Variables with SRC and nSRC as a Predictor of PCSI and PedsQL..58 Table 10 SRC and nSRC as a Predictor of Presence of Dichotomous Cervical Spine Measures 59 Table 11 SRC and nSRC as a Predictor of Presence of Dichotomous Headache or Dizziness60 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 7 Does Physical Therapy Presentation differ according to Mechanism of Injury in Adolescents after Concussion The Centers for Disease Control (CDC) estimates that between 1.6 and 3.8 million concussions occur with sports and recreation-related activities annually (Langlois et al., 2006). Concussion has been described as a traumatic brain injury induced by biomechanical forces that can be caused by a direct blow to the head or other area (McCrory et al., 2009, 2013, 2017). After experiencing a concussion, patients may present to their healthcare provider with reports of a rapid onset of short-lived impairments and functional disturbances of the neurologic system and a variety of persistent clinical signs and symptoms that can range in severity and duration (McCrory et al., 2009, 2013, 2017; Quatman-Yates et al., 2020). A majority of the literature surrounding concussion has been published on older athletes and patients (Duhaime et al., 2012; Hnninen et al., 2016; (McCrory et al., 2009, 2013, 2017; Resch et al., 2015) and only recently has more attention been given to younger patients (Bttner et al., 2020; Emery et al., 2021; Gunter et al., 2018; Harper et al., 2021; Quatman-Yates et al., 2020; Schneider et al., 2018). Due to the mechanism of injury associated with concussion, the cervical spine can be injured and can contribute to a myriad of symptoms common after concussion including headache, neck pain, and visual problems (Duhaime et al., 2012; Ellis et al., 2019; Emery et al., 2021; Guskiewicz & Register-Mihalik, 2011; Harper et al., 2021; Kennedy et al., 2019; Kennedy et al., 2017; Quatman-Yates et al., 2020; Schneider et al., 2018; Tiwari et al., 2019). Physical therapists are well-equipped to evaluate and treat patients with cervical impairments using treatment-based clinical practice guidelines (Blanpied et al., 2017) and additional impairmentbased strategies for management following concussion. (Ellis et al., 2015; Gunter et al., 2018; McCrory et al., 2017; Quatman-Yates et al., 2020; Schneider et al., 2014). In recent years, PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 8 particular attention has been given to cervical spine impairments in youth athletes following concussion (Ellis et al., 2019; Schneider et al., 2013, 2018; Tiwari et al., 2019) despite having no evidence-based guidelines for management of youth cervical injuries that accompany concussion. Impairment-based treatment guidelines require thorough evaluations of the patient population in question to therefore help guide appropriate treatments. Mechanism of injury (MOI) is an important piece of information and possible contributor to these impairments. It may provide insight into the various impairments found at the time of physical therapy evaluation and subsequent treatments needed to reduce these symptoms and impairments. The Berlin Consensus statement on Concussion in Sport defines sport-related concussion (SRC) as a traumatic brain injury induced by traumatic forces such as a blow to the head, face, or body causing short-lived impairments of neurological function McCrory et al., 2017) which can occur within organized sport (Daneshvar et al., 2011) and not explained by other injuries or comorbidities (McCrory et al., 2017). While SRC and non-SRC (nSRC) may present similarly, there may be important differences between the two regarding the mechanism of injury and circumstances or environment surrounding that mechanism of injury. Individuals who suffer nSRC include injuries related to falls, motor vehicle accidents, recreational activities, and other accidents that are not inherently part of what the patient may expect to happen. A prior study found no relationship between MOI and prolonged recovery amongst their cohort of patients after collision, falls, MVA and sport (Eisenberg et al., 2013). However, another study did acknowledge there may be a protracted recovery in a young cohort after MVA-related concussion as compared to SRC (Seiger et al., 2014). The Berlin Consensus statement and its authors (McCrory et al., 2017) acknowledge the challenge in concussion management whereby PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 9 this consensus document reflects the current state of knowledge and will need to be modified as new knowledge develops (p. 838) and that the term concussion, while useful, is imprecise, and because disparate author groups define the term differently, comparison between studies is problematic (p. 839). While the term concussion is considered imprecise, so is the understanding of the relationship of mechanism of injury on patients after concussion. More research is needed to examine the relationship between non-sport MOI and concussion recovery (Aggarwal et al., 2019, p. 2). Athletes are provided with numerous resources surrounding the injury prior to being eligible to compete in their sport and perhaps may have additional factors related to recovery from an SRC that could influence their initial presentation. Both groups, SRC and nSRC, may exhibit deficits that warrant a referral to physical therapy and their presentation to physical therapy may be different. Therefore, the purpose of this study is to examine the relationship between mechanism of injury (nSRC and SRC) and common impairments of the cervical spine, patient-reported outcomes, and symptom presentation at the time of physical therapy assessment. Research Question To address the study purpose, the following research question will be answered: Among adolescents presenting to physical therapy after a concussive injury, are there differences in quality of life and musculoskeletal function at their initial physical therapy visit between those injured during sport and those injured during other activities? Objectives The following study objectives will be met to answer the research question. PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 10 1. Identify if there is a significant difference in cervical spine impairments between those who had a sports-related mechanism of injury and those that did not. 2. Identify if there is a significant difference in quality of life between those who had a sports-related mechanism of injury and those that did not. 3. Determine if the mechanism of injury sustained by a participant is able to predict the cervical spine impairment, headache severity, total concussion symptom severity, or quality of life measure. Significance of the Study This study would contribute to the paucity of research studies currently available which describe cervical spine impairments in youth following concussion and help to develop impairment-based guidelines to inform treatment. The information gleaned from this study could optimize outcomes in this population by providing greater insight into common cervical spine impairments in young patients after concussion and aligning them with age-appropriate treatments. Literature Review Concussions are a traumatic brain injury induced by biomechanical forces that can cause a myriad of symptoms and disruption of neurologic function for a short period of time (McCrory et al., 2017, p. 2). It is estimated that millions of SRC and recreation-related concussions occur annually (Daneshvar et al., 2011; Langlois et al., 2006) with recent data suggesting there has been a nearly three-fold increase in the number of concussions reported in the National Electronic Injury Surveillance System between the years of 1997 and 2019 (Reid et al., 2020). This increase is likely due to the campaigns over the last 10-15 years that have sought PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 11 to increase public awareness about the diagnosis (Sarmiento et al., 2014). These efforts are geared to alert parents, coaches, and players to the importance of recognizing concussions and highlight potential strategies to improve management and curb the potential long-term consequences associated with concussion (Daneshvar et al., 2011; Sarmiento et al., 2014). Medical care estimates have been reported to be nearly $17 billion each year in the United States (Centers for Disease Control and Prevention, 2003) for these mild traumatic brain injuries. Concussion can be caused by a blow to the head, face, neck or body which allows the force to be transmitted to the head (Duhaime et al., 2012; McCrory et al., 2009, 2013, 2017; Quatman-Yates et al., 2020; Zemek et al., 2016). These traumatic forces can cause significant harm to the musculoskeletal structures in the cervical spine that are responsible for an individuals ability to turn their head, sit for prolonged periods of time, participate in school, and other functions that require static positions or dynamic head movements. For the very young (less than 5 years old) and very old (greater than 65 years), fallrelated mechanisms of injury appear to be the most common (Reid et al., 2020). For those individuals between the ages of 5 and 24 years of age, sports-related injuries are the most common and males between the ages of 5 and 14 years of age appear to be at the most risk (Reid et al., 2020). Another study of those presenting with concussion to the emergency department (ED) found similar results and demonstrated that a majority of adolescent concussion injuries were sustained by sport or recreational play (67.2%) followed by non-sports injury or fall (24.7%) and the remaining subjects were by motor vehicle collision, assault or other means not classified (Zemek et al., 2016). A study by Marar et al. (2012), however, noted that in 15- to 24year-olds concussion sustained in sport was second only to motor vehicle crashes as far as highest injury mechanism. PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 12 Across the number of sports that are reported to have the highest incidence in concussion, these numbers appear to vary greatly by region due to popularity and access to certain sports including action sports such as snowboarding (Feletti & Bonato, 2020) and usual sports such as football (Marar et al., 2012; Reid et al., 2020; Zemek et al., 2016). Across most sports and activities, there was a tendency for males to have a greater risk of concussion, especially in sports such as football (Feletti & Bonato, 2020; Reid et al., 2020; Zemek et al., 2016). There are a number of sports, however, such as soccer, basketball, (Daneshvar et al., 2011) and hockey (Daneshvar et al., 2011; Duhaime et al., 2012) reporting females having a higher incidence compared to their male counterparts. Overall, it is noted that females tend to have higher rates of concussions than males in similar sports (Daneshvar et al., 2011). Concussion is recognized as one of the more difficult injuries to manage due to the evolving nature of the acute signs after concussion and having no definitive test available to diagnose the injury (Kazl & Torres, 2019). As noted above, the symptoms after a concussion can be short-lived, especially in the older athlete, with a majority of patients after concussion recovering within 7-10 days (McCrory et al., 2009, 2013, 2017; Quatman-Yates et al., 2020). However, there is evidence that up to one-third of adolescents after concussion can have persistent symptoms after 4 weeks (Zemek et al., 2016). After a concussion, individuals may experience a wide range of symptoms and impairments. The impairments after concussions are commonly put into domains of physiologic impairments, cervicogenic impairments, and vestibulo-ocular impairments (Ellis et al., 2015; Grabowski et al., 2017). The physiologic post-concussion deficits may include impairments and symptoms such as headache worsened by physical or cognitive activity, elevated resting heart rate, and graded exercise testing difficulties due to worsening symptoms (Ellis et al., 2015). PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 13 Researchers studying management strategies for impairments in the physiologic domain have shown improvements can be made if these strategies are implemented early (Leddy et al., 2019) or later (Kurowski et al., 2017). In addition to the physiologic domain described above, cervicogenic and vestibulo-ocular impairments are also part of a comprehensive assessment. Cervicogenic post-concussion impairments may include neck pain, increased neck stiffness, cervical muscle tenderness to palpation, loss of cervical range of motion, occipital headaches, and impaired position sense of the head-neck segment (Ellis et al., 2015). Vestibulo-ocular post-concussion deficits may include symptom reports of dizziness, vertigo, or lightheadedness, blurred vision, motion sensitivity, photophobia, difficulty reading, impaired balance or gait testing, and impaired vestibular and ocular examinations (Ellis et al., 2015). Two retrospective studies of patients presenting for management of their concussion noted that most patients experienced symptoms and impairments within multiple domains (Grabowski et al., 2017; Lennon et al., 2018). These two specific domains, cervicogenic and vestibulo-ocular, have overlapping symptom reports and impairments that may be related to the cervical spine and are important to tease out early in the evaluation process (Quatman-Yates et al., 2020). Beginning around 2017, studies emerged that increasingly considered the involvement of the cervical spine as a concomitant injury along with concussion (Ellis et al., 2019; Emery et al., 2021; Kennedy et al., 2017; Schneider et al., 2018; Tiwari et al., 2019). Ellis et al. (2019) highlighted that cervical spine impairments may serve as a possible contributing source of symptoms in a cohort of pediatric patients. The authors highlighted that a majority of patients were still considered to have neck problems contributing to their symptoms despite the cohort being an average of 7.5 weeks from their concussive event (Ellis et al., 2019). Early randomized PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 14 controlled trials have shown that neck exercise, particularly with emphasis on muscular endurance and strength training, are effective in the treatment of cervicogenic headaches (Ylinen et al., 2010). One randomized controlled trial noted that a multimodal treatment approach combining cervical and vestibular exercise was effective in reducing symptoms and return to activity following concussion (Schneider et al., 2014). While it is promising to see these studies emerge, little progress has been made to align these efforts with the clinical practice guideline (Blanpied et al., 2017) to guide treatment of neck pain and provide evidence-based management strategies for patients after concussion. Impairment-based strategies for management of concussion have been proposed (Ellis et al., 2015) and these strategies are viewed as part of a comprehensive program across various populations (Gunter et al., 2018; Haider et al., 2021; McCrory et al., 2009, 2013, 2017; Quatman-Yates et al., 2020; Schneider et al., 2014). Impairments related to neck pain following concussion have been reported (Kennedy et al., 2019) and have been the focus of more recent studies in youth treated for concussion (Ellis et al., 2019; Schneider et al., 2013, 2018; Tiwari et al., 2019). With similar impairments noted in youth (Tiwari et al., 2019) as adults (Blanpied et al., 2017), there is the potential that similar strategies could be utilized across ages for this common impairment (neck pain) after concussion (Kennedy et al., 2019). Resch et al. (2015) aimed to predict the duration of persistent symptoms after concussion and found that self-report of neck pain was one of the factors that contributed to the formula for recovery. Previous, unpublished work has found that neck pain at the time of injury within a similar cohort of patients exhibited cervical impairments and worse patient-reported outcomes (Kanetzke et al., 2022). With those with neck pain at the time of injury demonstrating a worse presentation to PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 15 physical therapy, it would be worthwhile to continue to examine what factors, including mechanism of injury, could be related to these impairments. Details uncovered during the subjective portion of the examination are paramount for determining areas for further examination, potential for additional referrals, and prognosis (Quatman-Yates et al., 2020). There is a gap, however, linking what is known about cervical spine impairments in youth athletes after concussion and if potential relationships exist based on their mechanism of injury. This study will seek to examine the differences in those postconcussion injury symptoms and impairments between those who suffered a sport-related mechanism of injury and those that did not. Methods Study Type and Design This is a non-experimental study using a retrospective study design examining differences in clinical presentation and outcomes between groups of participants following concussion with different mechanisms of concussive injury. This study used data collected between January 1, 2017, and December 31, 2021. Participants Participants for this study included adolescents, age ranges of 10 to 18 years, who presented to physical therapy clinics at a major metropolitan childrens hospital in the Midwestern United States. To be included in the study, the individual must have suffered a concussion injury between the ages of 10 to 18 years and be referred to physical therapy for management. Exclusion criteria included diagnosis of a more severe traumatic brain injury as PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 16 evident by positive imaging findings indicating TBI versus concussion, concomitant injury (e.g. fracture), or incomplete or missing data for analysis. Data The following demographics and patient characteristics were collected from patient charts via the electronic medical record: Sex (male/female) Age (years) Time from injury date to physical therapy (PT) evaluation (days) Headache with cervical muscle palpation (positive or negative) Neck pain at the time of injury Independent Variable Mechanism of Injury (MOI) o Sport related or non-sport related (MVA, fall, etc.) Outcome Variables Cervical range of motion (CROM) o Cervical flexion, extension, lateral flexion to the left and right, rotation to the left and right (degrees) o Limited or Within Functional Limits (WFL) PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 17 Post-Concussion Symptom Inventory (PCSI) total score will be the severity of the participants symptoms (total from 0 to 126) with higher scores being worse o PCSI sub score Headache severity of symptom (total from 0 to 6) Pediatric Quality of Life (PedsQL) o Physical Functioning (8 items) Instruments Cervical Range of Motion (CROM) The cervical range of motion of participants was measured utilizing a CROM device. This device has demonstrated good test-retest reliability and validity (Audette et al., 2010). For cervical range of motion, the degrees measured were examined both as a continuous variable and as a dichotomous variable classified as within functional limits (WFL) or not. Smith et al. (2016) examined a healthy, adolescent cohort as part of baseline testing preseason and was utilized to determine the ROM cut points for values that would be considered WFL or limited for the current study. The authors (Smith et al., 2016) aimed to develop normative values for cervical ROM and suggested that scores at or below the 40th percentile may be abnormal. For example, their reference values from Table 2 of their study for the 40th percentile for cervical extension was 70 degrees (Smith et al., 2016). Therefore, those individuals in our study with less than or equal to 70 degrees of cervical extension was considered limited and the 40th percentile was used for all cervical ranges of motion. The dichotomization of these variables may be more clinically relevant to providers. Patient Reported Outcome Measures PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 18 For this study, two patient-reported measurement tools, the PedsQL and PCSI, were utilized. These tools are free to use; however, the PedsQL requires licensing rights which was provided through the primary researchers (J. H.) institution. Post-Concussion Symptom Inventory A critical component to the assessment and management of concussion is the tracking of patient symptoms. The Post-Concussion Symptom Inventory (PCSI) is a symptom-reporting tool that can be used in youth after concussion. The 21-item scale measures the severity of symptoms after concussion on a Likert scale with scores that range from 0 (no symptoms at all) to a maximum score of 124. The scale has been shown to be reliable and valid for determining concussed versus non-concussed individuals in the younger population (Gioia et al., 2009; Sady et al., 2014). The most common reported symptom following a concussion is headache (Duhaime et al., 2012; Ellis et al., 2015; Emery et al., 2021; Grabowski et al., 2017; Marar et al., 2012; Quatman-Yates et al., 2020). In a study by Bttner et al. (2020), nearly 25% of patients perceived that headache and dizziness had an adverse effect on their quality-of-life scores. In a large, longitudinal study of youth hockey players after concussion, authors noted that several factors, including greater symptom severity and headache severity, were significant predictors of longer clinical recovery (Emery et al., 2021). The PCSI includes unique self-reports for children ages 5-7 (5 items), 8-12 (17 items) and 13-18 (21 items) years of age (Sady et al., 2014). Symptom checklists, like the PCSI, have been recommended for monitoring recovery and should be age-appropriate (Quatman-Yates et al., 2020). Responses for the scale for those age 8 years and above utilizes a 7-point Likert scale measuring the severity of the symptom being reported with 0 being not a problem and 6 being severe problem and are totalled to provide a total PCSI score; the final question is ranked on a PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 19 5-point Likert scale with 0 being no different and 4 being very different for the patients overall difference since their injury. The scale has been shown to be reliable and valid for determining concussed versus non-concussed youth patients (Gioia et al., 2009; Sady et al., 2014). There are some limitations to the total PCSI scores ability to provide reliable change measures as some symptoms that are not endorsed (e.g. loss of consciousness, vomiting) are recommended to still be included due to potential for more severe injury assessment (Sady et al., 2014). The total post-concussion symptom score has previously been associated with prolonged recovery (Meehan et al., 2014) and may advise clinical decision-making. Test-retest reliability of the PCSI total score over a 2-week interval was shown to be moderately high (ICCs = 0.65 0.89) and the internal consistency was strong between post-concussion symptom scales ( = 0.80.9) (Sady et al., 2014). Pediatric Quality of Life The PedsQL includes a physical functioning subscale which contains eight items examining the patients ability to perform various physical activities. Participants rate their ability or inability to perform an activity from Never to Almost Always which provides a raw score from 0 to 4. These items are reverse scored from the sum of the items over the number of items answered and then converted into a 0 to 100 scale. The total scale score (23 items) has been found to be reliable and valid in distinguishing between healthy children and children with chronic conditions (Varni, 2021). In a sample examining healthy children and acutely or chronically ill children, participants considered healthy scored an average of 84.41, acutely ill 78.88, and chronically ill 77.36 on the physical health portion of the PedsQL (Varni et al., 2001). Prior work on a large, populated-based survey of children from the state of California demonstrated that QOL scores less than or equal to 72.98 on the PedsQL were impaired (Varni PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 20 et al., 2003). A change in the PedsQL physical functional score of 4.4 with other musculoskeletal conditions (Grigoriou et al, 2015) to 6.66 represents a clinically important difference (Varni et al., 2003). Procedures Informed Consent Informed consent was not needed for this study. All subjects enrolled in Cincinnati Childrens Hospital OTPT registry as part of the parent study (IRB 2014-6879) which permits information in their medical record to be included in a retrospective observational study. All subjects agreed to have their patient data included in a division wide registry at the time of their physical therapy evaluation as part of a patient registry process, thus allowing inclusion of their medical data absent a unique, study specific informed consent. As a result, additional consent is not required since the research presents no greater than minimal risk. Data Collection Following IRB approval and in accordance with OT/PT Divisional Patient Registry (IRB 2014-6879), patient background data and clinical data outlined above was obtained for the period of January 1, 2017, and December 31, 2021. Beginning in 2014, the institutions OT/PT/TR division formalized the development of a patient data registry by creating an infrastructure and extraction processes to support high-quality data capture and analysis for patient visits. Specific to patients with concussion, all physical therapists were trained to perform a systematic and reliable approach for management from evaluation to treatment. For this retrospective study, use of the electronic medical record system served as the source for data collection. Patients were identified via selection of an outcome tracking tool, PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 21 Concussion, within the electronic medical record chart by the physical therapist. Additional checks for missing participants were used by cross-checking referrals to physical therapy with concussion as the diagnosis. These records and corresponding descriptive and outcome variables were exported into a Microsoft Excel document by the primary researcher. For missing or incomplete data, a manual review of the record for non-discreet documentation of the data was completed when appropriate (e.g., pain not reported in intake/pain section, however typed into subjective history pain is 3/10). All other decisions regarding missing or incomplete data that could not be sourced from the electronic medical record system, whether discreet or not, was discussed amongst the research team to come to a consensus. Patient records were de-identified and the electronic file was kept on password-protected network drive only available to research staff and the primary researcher. Participants whose records were ineligible for use in this study were removed and the process for documenting this procedure was followed and reported to the IRB as necessary. One limitation of all studies involving electronic medical records data is the extent to which the data can be trusted. As mentioned previously, all clinicians complete competency training for reliable and valid measures taken across sites. In addition, education is provided twice annually to ensure management strategies for various populations, including concussion, are enhanced or maintained. Finally, the electronic medical record system was designed to maximize the utility of the data being entered by the clinicians who received this training. Data Management Several continuous variables were utilized within this study and were treated as such for the analysis. In addition to analysis as continuous variables, categorization of the variables was PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 22 conducted to analyse differences between dichotomous or categorical variables. For cervical range of motion, the degrees measured were examined as a continuous variable, and were also examined as a dichotomous variable of within functional limits (WFL) or not. Smith et al. (2016) was utilized to determine the ROM cut points for values that would be considered WFL or not within the patient dataset. The independent variable of mechanism of injury was categorized as sport-related concussion (SRC) and non-sport-related concussion (nSRC). Sportrelated concussions were injuries that occurred during organized sports. Patients classified as nSRC included individuals with mechanisms of injury documented within the electronic medical record (EMR) including motor vehicle accident (MVA), recreational activities (e.g., playground injury), or other (e.g. fall or hitting head on furniture). Demographic and clinical data of interest listed above were exported from the EMR to Microsoft Excel for ease of quality check and analysis. Data was extracted and maintained according to the registry protocol in a password-protected, access-controlled drive to which only study staff had access. Statistical Analysis Descriptive statistics were used to describe the following demographic and participant characteristics: sex, age, average time from injury date to physical therapy, and mechanism of injury. All comparisons were two-tailed and an alpha level of less than .05 was considered statistically significant. To achieve study objective one, independent t tests were used to determine if differences exist in the cervical range of motion values measured in degrees between patients with SRC and nSRC. In addition, chi-square tests were conducted to determine differences in the presence of PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 23 each dichotomous variable between SRC and nSRC. Those dichotomous musculoskeletal components include neck pain at time of injury, presence of limited cervical range of motion in all planes, and change (yes or no) in headache symptoms with palpation. To achieve study objective two, independent t tests were used to determine if differences exist in the patient reported outcome variables of PCSI and PedsQL total scores. In addition, Chi-square tests were conducted to determine differences in the presence of each symptom (dizziness and headache) between SRC and nSRC. To achieve study objective three, linear and logistic regression analyses were used to determine if mechanism of injury predicted any one of the dependent variables. Linear regression was utilized to examine the ability of MOI to predict the continuous dependent variables. Binomial logistic regression was conducted for those categorical dependent variables. In addition, for the continuous dependent variables, separate linear regression was analyzed to evaluate the interaction of demographic variables with each of the continuous dependent variables. To indirectly assess clinical relevance, effect sizes were calculated and interpreted based on recommendations of Cohen (1992). Guidelines from Laerd Statistics were used to address test assumptions (Laerd Statistics, n.d.). For large datasets, it has been argued that normality of the data should be considered but does not have to be satisfied to choose between parametric or non-parametric tests, specifically with the use of independent t-tests (le Cessie et al., 2020). Equality of variance between groups was determined utilizing Levenes test for normality. Data was analysed using IBM SPSS Statistics for Windows, Version 28.0 (IBM Corp., Armonk, NY). Results PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 24 Out of 665 records collected, 505 met the criteria for analysis. Figure 1 demonstrates the flowchart for criteria exclusion and Table 1 represents the demographic breakdown amongst the patient records examined. There were 256 patients in the SRC group with a mean age of 14.75 years (SD = 2.07), average time to PT 42.73 days (47.15), and 58% of the group being female. There were 249 patients in the nSRC group with a mean age of 15.07 years (SD = 2.18), average time to PT 45.69 days (SD = 61.38), and 68% of the group being female. Objective 1 Results For study objective one, differences in cervical ROM between nSRC and SRC were examined. Results can be found in Table 2. All patients who had cervical ROM recorded as a continuous variable were included in the analysis. Patients with nSRC had significantly less cervical extension (p = .010), cervical lateral flexion left (p = .043), cervical lateral flexion right (p = .009), and cervical rotation left (p = .039) than patients with SRC. Cervical rotation to the right trended towards statistical significance (p = .053). Cervical flexion (p = .846) was the only cervical range of motion value that was not significantly different between the two groups. In addition, for study objective one, a chi-square test was performed to examine relationships between MOI (nSRC vs SRC) and each dichotomous variable inclusive of cervical ROM values listed as within functional limits (WFL) or limited, neck pain at the time of injury (yes or no), and palpation change in headache (yes or no). See Table 3 for results. There are a greater proportion of patients after nSRC with limited cervical extension (2(1) = 4.530, p = .033) and cervical rotation left (2(1) = 4.013, p = .045). There are a greater proportion of patients after nSRC with neck pain at the time of injury (2(1) = 5.094, p = .024). In addition, there was a trend toward significance for cervical rotation to the right (2(1) = 3.338, p = .068). PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 25 Objective 2 Results For study objective two, differences in the patient-reported outcomes measures of PCSI and PedsQL were examined between patients with SRC and nSRC . Results can be found in Table 4. When examining PCSI score, 198 patients in the SRC group and 173 patients in the nSRC group successfully completed the PCSI and were included in the analysis. For differences in PCSI between groups, the assumption of homogeneity of variances was violated, as assessed by Levenes test for equality of variances (p <.001). Patients in the SRC group had significantly lower (better) scores (p < .001) than those in the nSRC group. The PCSI scores were lower (better) in the SRC group (mean 28.75) than those in the nSRC group (mean 43.02). There were 233 patients in the SRC group and 221 patients in the nSRC group for examination of PedsQL scores. For differences in PedsQL scores between groups, there was homogeneity of variances, as assessed by Levenes test for equality of variances (p = .677). The PedsQL scores were significantly higher (better) in the SRC group (p <.001). The mean PedsQL score for patients after nSRC was 56.16 and for patients after SRC was 64.90. A chi-square test was performed to examine relationships between MOI (nSRC vs SRC) and the presence of headache or dizziness symptoms. See Table 5 for results. There were a greater proportion of patients after nSRC with the presence of headache than those who suffered a SRC (2(1) = 9.496, p = .002). Patients who suffered a nSRC were more likely to present with a headache at the time of physical therapy evaluation. Objective 3 Results For study objective three, mechanism of injury (SRC and nSRC) was independently examined to see if it was able to predict the measures of cervical ROM, PedsQL score, and PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 26 PCSI total score at the time of initial physical therapy evaluation. Results can be found in Tables 6 and 7. The mechanism of injury predicted cervical extension ROM, F(1, 399) = 6.78, p = .010, left cervical lateral flexion ROM, F(1, 410) = 4.12, p = .043, right cervical lateral flexion ROM, F(1, 410) = 6.99, p = .009, and left cervical rotation ROM, F(1, 360) = 4.28, p = .039, with patients after nSRC demonstrating less cervical motion for each variable than patients after SRC. Despite statistical significance, the mechanism of injury accounted for a low percentage of variability, specifically 1.7% of cervical extension, 1% of left cervical lateral flexion, 1.7% of right cervical lateral flexion, and 1.2% of left cervical rotation. The mechanism of injury did not significantly predict cervical rotation right ROM, F(1, 360) = 3.76, p = .053. The mechanism of injury significantly predicted PCSI, F(1, 369) = 26.54, p < .001, accounting for 6.7% of the explained variability in PCSI. The mechanism of injury significantly predicted PedsQL, F(1, 452) = 17.88, p < .001, and accounted for 3.8% of the explained variability in PedsQL. A multiple linear regression was constructed to determine if mechanism of injury predicted continuous cervical range of motion values while considering sex, age, and time to physical therapy. Results can be found in Table 8. The multiple regression model significantly predicted cervical extension ROM, F(4, 396) = 4.710, p = .001, adjusted r2 = .036. Only age and time to PT added to the statistical significance of the model (p < .05). The multiple regression model significantly predicted right cervical lateral flexion ROM, F(4, 407) = 2.546, p = .039, adjusted r2 = .015. Only mechanism of injury was found to significantly contribute to the model, (p < .05) for right cervical lateral flexion ROM. A multiple linear regression was additionally constructed to determine if mechanism of injury was able to predict the PedsQL and PCSI scores while considering sex, age, and time to physical therapy. Results can be found in Table 9. The multiple regression model significantly PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 27 predicted PCSI, F(4, 366) = 11.084, p < .001, adjusted r2 = .098. Only sex and age contributed significantly to the model (p < .05) for PCSI. In addition, the multiple regression model significantly predicted PedsQL score, F(4, 449) = 5.616, p < .001, adjusted r2 = .039. Only mechanism of injury contributed significantly to the model (p < .05) for PedsQL score. Additionally, for objective three, separate and independent binomial logistic regression analyses were used to examine the predictive ability of mechanism of injury on the presence of impairments or symptoms that patients with nSRC and SRC may exhibit. Dichotomous variables included limited ROM, reproduction of headache with palpation, and neck pain at the time of injury. These results can be found in Table 9. The logistic regression model for presence of limited cervical extension was statistically significant, 2(1) = 4.492, p = .034. The model explained only 1.7% (Nagelkerke R2) of the variance in the presence of limited cervical extension ROM and correctly classified 73.8% of cases. Similarly, the logistic regression model for presence of limited cervical left rotation was statistically significant, 2(1) = 4.000, p = .046. The model explained only 1.2% (Nagelkerke R2) of the variance in the presence of limited cervical left rotation ROM and correctly classified 60% of cases. Lastly, the logistic regression model for neck pain present at the time of injury was statistically significant, 2(1) = 5.077, p = .024. The model explained only 1.4% (Nagelkerke R2) of the variance in the those presenting with neck pain at the time of injury and correctly classified 55% of cases. The odds of having the presence of headache are 2.5 times greater for patients with nSRC than SRC. The odds of having limited cervical extension ROM were 1.6 times greater for patients with nSRC than SRC. The odds of having limited left cervical rotation ROM were only 1 time greater for patients with nSRC than SRC. Lastly, the odds of having neck pain at the time of injury were 1.1 times greater for patients with nSRC than SRC. PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 28 A binomial logistic regression was used to ascertain the effects of mechanism of injury (SRC vs nSRC) on the likelihood that participants have the presence of each headache or dizziness symptom. Results can be found in Table 10. The logistic regression model for presence of headache was statistically significant, 2(1) = 9.074, p = .003. The model explained only 4.4% (Nagelkerke R2) of the variance in the presence of headache and correctly classified 83.9% of cases. The odds of having the presence of headache symptoms are 2.5 times greater for patients with nSRC than SRC. Discussion This retrospective study aimed to determine if common physical therapy objective values and patient-reported outcomes were different based on mechanism of injury (SRC compared to nSRC) among adolescents after concussion. There were 256 patients represented in the SRC group and 249 patients in the nSRC group. The present study was able to determine that there does appear to be significant differences in cervical spine impairments and patient-reported outcome measures between patients with SRC and nSRC. In addition, the mechanism of injury was able to predict four of the six cervical spine ROM measurements, PCSI score, and PedsQL score. Similarly, mechanism of injury was able to predict the presence of range of motion limitations for most cervical spine motions as well as predict the likelihood of neck pain at the time of injury and the presence of headache at the time of physical therapy evaluation. Cervical Spine Range of Motion Impairments The American Physical Therapy Associations Clinical Practice Guideline on Concussion highlighted the importance of a thorough cervical spine exam as a crucial, initial step in a comprehensive concussion examination (Quatman-Yates et al., 2020). The findings for cervical PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 29 spine impairments after a concussion have been well-documented (Duhaime et al., 2012; Ellis et al., 2019; Kennedy et al., 2019; Kennedy et al., 2017; Quatman-Yates et al., 2020; Schneider et al., 2018; Schneider et al., 2014; Tiwari et al., 2019)). The results of the current study indicate that patients with nSRC have statistically significant differences in ROM than those with SRC. Patients after an nSRC appear to have statistically significant reductions in their ROM for cervical extension, cervical lateral flexion to the left and right, and cervical rotation to the left with a trend towards significance for cervical right rotation. The current study appears to be the first to examine these differences based on classifying adolescents by SRC and nSRC. Tiwari et al. (2019) characterized their findings of cervical spine impairments in a young cohort of patients after concussion as limitations being present or not present. In their study it was reported that over 70% of patients had upper cervical mobility impairments which is known to contribute to much of the available cervical rotation in patients (Tiwari et al., 2019). Their study also examined a young cohort of individuals after concussion and found similar results to the current study for deficits in cervical rotation ROM. Ellis et al. (2015) described impairment-based groups for patients after concussion and included cervicogenic post-concussion disorders as one of those groups. The APTAs Neck Pain Revision Clinical Practice Guideline (CPG) (Blanpied et al, 2017) also highlighted common findings for patients who may fit into the categories of neck pain with headache (cervicogenic). The highlights from the CPG include having a mechanism of injury linked to trauma, presence of headache and/or dizziness, and limited cervical ROM (Blanpied et al., 2017). The current study examined patients after a traumatic, concussive event and demonstrated that those with nSRC had limited cervical ROM as well, with both cervical extension and cervical rotation to the left PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 30 being the only two cervical variables that were statistically significant when examined as a continuous (degrees of motion) and dichotomous (limited or WFL) variable. In addition, those patients after nSRC were more likely to have neck pain at the time of injury. If we included analysis performed in our current study that also demonstrated presence of headache to be statistically significant between the two groups, it would appear that the nSRC group fit much of the criteria outlined by the APTAs Clinical Practice Guideline for cervicogenic headache. Further, a study by Jull et al (2007) discussed the major loss of motion to be primarily in the sagittal plan (cervical extension), followed by horizontal planes (axial rotation). This was featured as part of their clinical prediction rule (CPR) for cervicogenic headache with a reported sensitivity of 100% and specificity of 94% by clustering cervical ROM, manual examination of the upper cervical spine, and the cranio-cervical flexion test (RubioOchoa et al., 2016). In the present study, cervical extension and rotation to the left were both found to be significantly different for the presence of the respective impairment and for the degrees of range of motion between the SRC and nSRC groups. While the results of the current study appear to demonstrate that the nSRC group demonstrates common characteristics outlined in the CPG and CPR for cervicogenic headache in the literature, the specific cervical ROM values and impairments for patients after concussion, especially younger patients, warrant further investigation. Despite small differences between the groups, this study highlights that clinicians could expect differences between those with SRC and nSRC and careful examination of range of motion values with reliable tools (e.g., CROM). Smith et al. (2016) noted that when evaluating an athlete with reduced cervical motion (notably the 40th percentile or lower) clinicians should probe further into those factors contributing to the decreased motion. While the cervical ROM PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 31 values presented in this study were statistically significant and different between the groups (SRC and nSRC), these values may not be clinically meaningful as their mean differences (Table 2) of approximately 3 and 4 degrees do not exceed suggested MCIDs for cervical extension or rotation. (Jrgensen et al., 2017). Patient-Reported Outcomes Post-Concussion Symptom Inventory The use of post-concussion symptom scales has been the hallmark of concussion management strategies and is supported by a number of consensus statements (McCrory et al., 2017; McCrory et al., 2013) and clinical practice guidelines following concussion and mild traumatic brain injury (Quatman-Yates et al. 2020; Marshall et al., 2012). The present study found a significant difference between mechanism of injury and PCSI total score with those individuals suffering an nSRC having worse total PCSI scores as compared to those with SRC. The mean PCSI for individuals suffering from a SRC was 28.75 as compared to those with a mechanism of nSRC at 43.02. The current studys differences between the nSRC and SRC groups exceed the reported MCIDs found in the literature of between 7 and 10 points on the PCSI (Cheever et al., 2019; Johnston et al., 2015; Sufrinko et al., 2018). It is well-established that high symptom severity reports have been shown to have poor prognostic indicators of recovery (Emery et al., 2021, Zemek et al., 2016). In our study, having an nSRC versus a SRC suggests the patient could present with higher/worse symptom reporting at the time of physical therapy evaluation. These high symptoms reports may lead to their episode of physical therapy care taking longer to recover. While outside the scope of the current study, future work could examine differences in recovery trajectories between these groups based on initial total symptom reports. PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 32 The most common reported symptom following a concussion is headache (Duhaime et al., 2012; Ellis et al., 2015; Emery et al., 2021; Grabowski et al., 2017; Marar et al., 2012; Quatman-Yates et al., 2020). Headache was also the most common symptom reported at the time of physical therapy evaluation for young patients after concussion (Tiwari et al., 2019). The present study would suggest that if you suffered an nSRC that you were more likely to present with a headache at the time of physical therapy evaluation as compared to those with SRC. The presence of this symptom has previously been shown to be one of a few factors related to protracted recovery in younger patients (Zemek et al., 2016). Both groups in the present study had a large percentage of patients that reported the presence of headache upon physical therapy evaluation, with nSRC being at 90.2% and SRC at 78.4%. These findings are similar to a prior study which noted high occurrence of headaches (84%) and dizziness (57%) among the patients in this study (Tiwari et al., 2019, p. 291). The authors of the prior study also commented on the percentage of these symptoms and relationship to the cervical spine impairments (most notably the upper cervical spine), as an additional reason to thoroughly examine the cervical spine in a population of adolescents after concussion. While the presence of dizziness was not significant between SRC and nSRC, our study also noted similar reports of dizziness, 64.7% and 58.8%, for nSRC and SRC. Both studies highlight the high symptom reports of both headache and dizziness in young patients after concussion and support the challenges associated with the cervical spine and these confounding symptom reports common after concussion. Pediatric Quality of Life (PedsQL) In a study by Bttner et al. (2020), nearly 25% of patients perceived that headache and dizziness had an adverse effect on their quality-of-life scores. Pieper & Garvan (2013), however, PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 33 found that health-related quality of life scores for children after mild traumatic brain injury (mTBI), or concussion, were not significantly different between times points of 1-, 3-, 6-, and 12-months post-injury and that children tended to rate themselves lower than their parents on the Physical Health Functioning Score post-injury. Our present study looked at the Physical Health Functioning Score reported as PedsQL and found that there was a significant difference between nSRC and SRC on PedsQL scores. Those patients suffering an nSRC had lower/worse scores than those with SRC. In addition, the mechanism of injury was significantly able to predict PedsQL scores. Clinically it is important to note the myriad of challenges patients face after concussion, not just with those deficits and impairments discovered during a physical therapy evaluation. PedsQL measures can help ensure a more robust examination of how the childs overall well-being, including the Physical Health Functioning Score, is impacting their initial present and subsequent recovery after concussion. A study by Houston et al. (2016), demonstrated average measures of PedsQL Physical Health Functioning Scores at Day 10 returned to mean baseline scores in a cohort of young patients after concussion. Mechanism of Injury as a Predictor Cnossen et al. (2018) looked at factors related to prediction of persistent post-concussion symptoms. The authors found that presence of neck pain and headache at the time of injury significantly improved their model at predicting who would and would not go on to have persistent post-concussion symptoms and only neck pain was significantly associated with persistent post-concussion symptoms at 6 months (Cnossen et al., 2018). Since their model used data taken at the emergency department (ED), this studys findings could be viewed similarly to our documented findings of neck pain at the time of injury. The current study found neck pain at PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 34 time of injury to be significantly associated with mechanism of injury for those sustaining an nSRC. The current study also found that mechanism of injury was able to able to predict the presence of neck pain as patients with a nSRC were more likely to have neck pain at the time of physical therapy evaluation (p = .024). When examining the ability of mechanism of injury, nSRC vs SRC, to predict other variables associated with the cervical spine, our data would also suggest lower ranges of cervical motion in degrees for all motions (p < .05) will be found for those with nSRC except for cervical rotation right, which trended towards significance (p = .053). When examining if mechanism of injury, nSRC or SRC, was able to predict if ROM was limited or WFL, our results indicated that if a patient suffered an nSRC only cervical extension (p = .034) and cervical rotation left (p = .046) were significantly different (more likely to be impaired) compared to the SRC group. While the current study chose to focus on mechanism of injury and its ability to predict dependent variables, examination of the interaction of some of the demographic variables was also performed for those continuous variables (cervical motion and patient-reported outcomes). When examining the interaction of sex, age, time to PT (days), and mechanism of injury for cervical variables (Table 8), mechanism of injury was consistently the strongest predictors for all cervical ROM values, highlighting patients after nSRC were more likely to have reduced or limited cervical ROM. The exception was for cervical extension, with age (p = .038) and time to PT (p = .048) also contributing significantly to the model. As the age of the patient increases, they tend to have less cervical extension ROM. If the patient is closer to their time of injury, their cervical extension ROM is likely to be less as well. Surprisingly sex did not contribute to the model for cervical extension (p = .081) despite other studies demonstrating a higher incidence in females. Prior studies have pointed out the potential reason for a higher likelihood of concussive PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 35 injuries in females versus males in similar sports and would suggest neck strength and the inability to attenuate forces about the head and neck as potential contributors (Collins et al., 2014; Covassin et al., 2018). In addition, neck strengthening programs have been proposed to help mitigate risk of concussive injuries (Streifer et al., 2019), especially in females, because of the strong association of the female sex with concussive risk (Zemek et al.,). Recent systematic reviews indicates that the female sex and prior history of neck pain are the strongest and most consistent risk factors for new-onset neck pain in office workers and the general population (Blanpied et al., 2017). Future studies could examine neck strength and its influence on the dependent variables. When the interaction of sex, age, and time to PT (days) were examined to determine the ability of mechanism of injury to predict patient-reported outcomes (PCSI and PedsQL), only some of the factors examined demonstrated a significant interaction. Specifically, with PCSI scores, sex (p = .010), age (p = .004) and mechanism of injury (p < .001) contributed significantly to the predictive model. Zemek et al. (2016) also found several variables as part of a prediction model to determine persistent post-concussive symptoms (PPCS) at 28 days in younger children presenting to the emergency department. Some of the variables of interest related to our study, consistent with Zemek, included older age, specifically 13-18 years old, female, and headache at the time of presentation. For PedsQL, only mechanism of injury contributed to the model (p < .001). Clinicians could therefore expect that older females (closer to 18) who suffered an nSRC and are presenting more recently after their concussive injury may report higher PCSI values. A study by Russel et al. (2019) found that those young patients after concussion who went on to have delayed recovery (>28 days) had clinically meaningful lower initial assessment PedsQL Physical Functioning scores as compared to those with normal PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 36 recovery after SRC. Future studies could examine more closely other factors within the female population subsets and other potential confounding variables (history of depression or anxiety) which have also been noted to likely contribute to higher PCSI reports at the time of injury (Tator et al., 2016). Overall, the regression models for nSRC and SRC predicting outcome variables explained extremely low percentages of the variance for any given variable. For example, the model explained only 1.7% (Nagelkerke R2) of the variance in the presence of limited cervical extension ROM. Ultimately, there were significant differences in the variables we examined between those patients after nSRC versus SRC at the time of physical therapy assessment. However, it appears these differences may lack significant clinical relevance and demonstrate small effect sizes overall. While the current study would suggest that there is a difference at the time of physical therapy presentation between patients, based on mechanism of injury, there is still more work to be done on identifying those contributing factors for cervical musculoskeletal deficits and poor patient-reported outcome scores. Limitations It is important to acknowledge the limitations of the current study. This was a retrospective chart review of concussion patients presenting to a metropolitan pediatric hospital for physical therapy examination and therefore results of this study may not be generalizable to populations outside of the pediatric population. In addition, it is difficult to control for many of the factors that can contribute to a patients initial presentation to physical therapy which includes family history, personal medical history or comorbidities, and prior management strategies which may include treatments aimed at musculoskeletal and post-concussive symptom PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 37 complaints; each of these could have profound effects and would be difficult to discern what, if any, effect that would have had on their presentation. There may be other differences whose influence we are unable to measure or gauge for those who suffered their injury through sport versus non sport including intrinsic and extrinsic factors related to recovery from any injury. It is important that a thorough subjective history of the events, personal and familial medical history, patients prior recovery trajectories from musculoskeletal or prior concussions, and patient primary complaints are elicited as they may advise much of the physical therapy assessment, regardless of diagnosis. These details and factors are sometimes challenging to capture within the electronic medical record and could have a significant influence on the findings of the current study. Therefore, these variables should remain a mainstay for the clinician to inform evaluation and prognostic decisions on an individual basis. Neck pain at the time of injury and presence of headache, whether at the time of injury or presentation to physical therapy, are noteworthy for the examining clinician and must be managed accordingly. The current study was only able to comment for those variables of interest at the time of physical therapy evaluation at our facility and could possibly serve as exclusionary criteria for future studies to control for outside factors such as additional treatments. For cervical ROM values, all values except cervical flexion, were significantly different between mechanism of injury, SRC and nSRC, and some ROM values were able to be predicted based on mechanism of injury. With mean differences being small between nSRC and SRC, clinicians should approach their examination of the cervical spine with the thoroughness described by the Cervical Clinical Practice Guideline and other sources as part of a comprehensive examination. The overall values of cervical ROM differences, however, may not be clinically meaningful with this population. PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 38 Additional future studies should examine the effect of all initial presentation variables from this study and their relationship to patients 30 day and discharge presentation during an episode of management in the healthcare system. Conclusion This study contributes to the body of evidence that mechanism of injury influences the initial presentation to physical therapy of youth after a concussive injury. While the exact process by which mechanism of injury (SRC or nSRC) contributes to a patients presentation remains unknown, there appears to be some difference between these groups for cervical values and patient-reported outcome scores. 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M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329-341. Varni, J. W. (2021). The PedsQL: Measurement model for the Pediatric Quality of Life Inventory. PedsMetrics. https://www.pedsql.org/pedsql12.html Ylinen, J., Nikander, R., Nyknen, M., Kautiainen, H., & Hkkinen, A. (2010). Effect of neck exercises on cervicogenic headache: A randomized controlled trial. Journal of Rehabilitation Medicine, 42(4), 344-349. Zemek, R., Barrowman, N., Freedman, S. B., Gravel, J., Gagnon, I., McGahern, C., Aglipay, 47 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION M., Sangha, G., Boutis, K., Beer, D., Craig, W., Burns, E., Farion, K. J., Mikrogianakis, A., Barlow, K., Dubrovsky, A. S., Meeuwisse, W., Gioia, G., Meehan, W. P., 3rd, () & Pediatric Emergency Research Canada Concussion. (2016). Clinical risk score for persistent postconcussion symptoms among children with acute concussion in the ED. JAMA, 315(10), 1014-1025. https://doi.org/10.1001/jama.2016.1203 48 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Figure 1 Patient Flowchart for Exclusion Initial Pull all MRN ( n = 665) Excluded due to Not concussion (n=140 ) New n without not concussion (n = 525) Final n (n = 505) Note. MRN = Medical Record Number Excluded due to age (<10 or >18) (n= 20 ) 49 50 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 1: Demographic Characteristics of Patients in SRC and nSRC Age (years) Sex Male Female Total Time to PT (days) SRC N = 257 N (%) 14.75 (2.07) nSRC N = 248 N (%) 15.07 (2.18) 107 (42%) 150 (58%) 257 42.73 (47.15) 80 (32%) 168 (68%) 248 45.69 (61.38) Note. SRC = Sport-Related Concussion, nSRC = not Sport-Related Concussion Total 187 318 505 51 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 2 Cervical Range of Motion Differences based on Mechanism of Injury SRC M nSRC SD M SD T (df) (398) .195 (399) 2.603 (410) 2.030 (410) 2.643 (348.874) p Cohens d Cervical 59.57 14.844 59.28 14.934 .846 .019 Flexion Cervical 63.49 15.756 59.20 17.235 .010* .260 Extension Cervical 45.15 12.086 42.84 11.055 .043* .200 LF Left Cervical 45.75 11.298 42.89 10.628 .009* .260 LF Right Cervical Rotation 67.16 12.523 64.15 15.000 .039* .218 a 2.069 Left Cervical (360) Rotation 67.32 13.023 64.53 14.317 .053 .204 1.940 Right Note. MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), df = degrees of freedom, LF = Lateral Flexion a Equal variances not assumed (p < .05) *p < .05. 52 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 3 Limited vs WFL Cervical Range of Motion Differences based on Mechanism of Injury Mechanism of Injury Limited WFL N (%) 82 (41%) 84 (42%) 157 (78.5%) 139 (69.2%) 129 (61.7%) 107 (52.7%) N (%) 118 (59%) 116 (58%) 43 (21.5%) 62 (30.8%) 80 (38.3%) 96 (47.3%) p Cervical Flexion nSRC .839 (x60) SRC Cervical nSRC .033 Extension (x71) SRC Cervical Lateral nSRC .064 Flexion LeD SRC (x46) Cervical Lateral nSRC 126 (60.6%) 82 (39.4%) .096 Flexion Right SRC 107 (52.5%) 97 (47.5%) (x46) Cervical RotaHon nSRC 102 (44.5%) 127 (55.5%) .045 LeD (x69) SRC 81 (35.4%) 148 (64.6%) Cervical RotaHon nSRC 97 (42.4%) 132 (57.6%) .068 Right (x68) SRC 78 (34.1%) 151 (65.9%) Neck Pain Time of nSRC 140 (57.1%) 105 (42.9%) .024 Injury SRC 119 (47%) 134 (53%) Headache with nSRC 63 (40.4%) 93 (59.6%) .236 PalpaHon SRC 82 (46.9%) 93 (53.1%) Note. WFL = Within Functional Limits; nSRC = not Sports-Related Concussion; SRC = Sports-Related Concussion PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 53 Table 4 Patient Reported Outcome Differences based on Mechanism of Injury SRC nSRC M SD M SD t(327.553) p Cohens d PCSI 28.75 23.62 43.02 29.67 -5.075 <.001 -.536 M SD M SD t(452) p Cohens d PedsQL 64.90 22.08 56.16 21.96 4.228 <.001 .397 Note. MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), PedsQL = Pediatric Quality of Life Physical Health Functioning 54 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 5 Proportion Differences for Presence of Headache or Dizziness based on Mechanism of Injury Symptom Present Not Present N (%) N (%) nSRC 156 (90.2%) 17 (9.8%) SRC 156 (78.4%) 43 (21.6%) nSRC 112 (64.7%) 61 (35.3%) Mechanism of Injury Headache Dizziness SRC 117 (58.8%) 82 (41.2%) Note. nSRC = not Sports-Related Concussion; SRC = Sports-Related Concussion p .002 .240 55 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 6 Linear Regression Predicting Cervical Range of Motion based Independently on Mechanism of Injury 95% CI R2 Cervical Extension .017 Beta SE Constant 67.780 MOI -4.293 LL UL 2.605 62.658 72.902 1.649 -7.534 -1.051 p <.001 -.129 .010 Cervical Constant 47.468 1.811 43.907 51.029 <.001 Lateral Flexion .010 MOI -2.315 1.141 -4.558 -.073 -.100 .043 Left Cervical Constant 48.601 1.713 45.233 51.969 <.001 Lateral Flexion .017 MOI -2.856 1.080 -4.980 -.732 -.129 .009 Right Cervical Constant 70.166 2.296 65.650 74.682 <.001 Rotation .012 MOI -3.006 1.452 -5.862 -.149 -.108 .039 Left Cervical Constant 70.110 2.275 65.637 74.584 <.001 Rotation .010 MOI -2.790 1.439 -5.619 .039 -.102 .053 Right Note. MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), CI = Confidence Interval, SE = Standard Error, LL = Lower Limits, UL = Upper Limits, = Beta Coefficient, R2 = R Square 56 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 7 Linear Regression Predicting Post-Concussion Symptom Inventory and Pediatric Quality of Life based Independently on Mechanism of Injury 95% CI R2 PCSI .067 PedsQL .038 Beta SE Constant 67.780 MOI LL UL 2.605 62.658 72.902 -4.293 1.649 -7.534 -1.051 Constant 47.468 1.811 43.907 51.029 MOI -2.315 1.141 -4.558 -.073 p <.001 -.129 .010 <.001 -.100 .043 Note. MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), PCSI = Post-Concussion Symptom Inventory, PedsQL = Pediatric Quality of Life Physical Health Functioning, CI = Confidence Interval, SE = Standard Error, LL = Lower Limits, UL = Upper Limits, = Beta Coefficient, R2 = R Square 57 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 8 Linear Regression Examining the Interaction Between Sex, Age, and Time to PT on Mechanism of Injury Predicting Cervical Range of Motion 95% CI Adj. R2 Cervical Extension Cervical Lateral Flexion Left Cervical Lateral Flexion Right Cervical Rotation Left .036 .004 .015 .005 Beta SE LL UL p Constant 82.864 6.389 70.304 95.424 Sex -3.019 1.726 -6.413 .375 -.088 .081 Age (years) Time to PT (days) MOI -.800 .384 -1.555 -.044 -.103 .038 .028 .014 .000 .056 .098 .048 -3.929 1.640 -7.154 -.705 -.118 .017 Constant 50.676 4.487 41.854 59.497 Sex -.577 1.211 -2.958 1.803 -.024 .634 Age (years) Time to PT (days) MOI -.185 .269 -.713 .343 -.034 .491 .009 .010 -.011 .029 .045 .362 -2.252 1.148 -4.509 .004 -.097 .050 Constant 52.469 4.241 44.133 60.806 Sex -1.235 1.145 -3.486 1.016 -.054 .281 Age (years) Time to PT (days) MOI -.171 .254 -.670 .328 -.033 .501 .012 .009 -.007 .031 .062 .205 -2.744 1.086 -4.878 -.610 -.124 .012 Constant 76.123 5.767 64.781 87.466 Sex .171 1.528 -2.834 3.176 .006 .911 Age (years) Time to PT (days) MOI -.416 .345 -1.095 .263 -.064 .229 -.003 .013 -.028 .022 -.013 .804 -2.920 1.462 -5.794 -.046 -.105 .046 <.001 <.001 <.001 <.001 Note. Sex = Male = 1, Female = 2, Age MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), CI = Confidence Interval, SE = Standard Error, LL = Lower Limits, UL = Upper Limits, = Beta Coefficient, Adj. R2 = Adjusted R Square for model 58 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 9 Linear Regression Examining the Interaction Between Sex, Age, and Time to PT on Mechanism of Injury Predicting Post Concussion Symptom Inventory and Pediatric Quality of Life Scores 95% CI Adj. R2 PCSI PedsQL .098 .039 Beta SE LL UL p Constant -23.786 11.064 -45.542 -2.029 Sex 7.369 2.860 1.745 12.993 .128 .010 Age 1.888 .656 .598 3.177 .143 .004 Time to PT MOI -.021 .025 -.070 .027 -.043 .385 13.426 2.730 8.058 18.794 .244 <.001 Constant 73.747 7.994 58.037 89.456 Sex -3.621 2.168 -7.881 .639 -.079 .096 Age .285 .490 -.678 1.248 .027 .562 Time to PT MOI .026 .019 -.010 .063 .066 .156 -8.521 2.084 -12.616 -4.425 -.190 <.001 .032 <.001 Note. Sex = Male = 1, Female = 2, Age MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), PCSI = Post-Concussion Symptom Inventory, PedsQL = Pediatric Quality of Life, CI = Confidence Interval, SE = Standard Error, LL = Lower Limits, UL = Upper Limits, = Beta Coefficient, Adj. R2 = Adjusted R Square for model, MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), 59 PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION Table 10 Logistic Regression Predicting Likelihood of Presence of Cervical Spine Impairments based on Mechanism of Injury Beta SE Wald df p Odds Ratio 95% CI for Odds Ratio Lower Upper 1.037 2.557 Cervical MOI .488 .230 4.492 1 .034 1.629 Extension Constant .807 .153 27.946 1 <.001 2.242 Cervical MOI .384 .192 4.000 1 .046 1.467 1.008 2.137 Rotation Constant -.603 .138 19.020 1 <.001 .547 Left Neck MOI .406 .180 5.077 1 .024 1.501 1.054 2.138 Pain TOI Constant -.119 .126 .888 1 .346 .888 Note. MOI = Mechanism of Injury (Sport-Related Concussion = 1, not Sport-Related Concussion = 2), TOI = Time of Injury, SE = Standard Error, df = degrees of freedom, CI = Confidence Interval PHYSICAL THERAPY PRESENTATION IN ADOLESCENTS AFTER CONCUSSION 60 Table 11 Logistic Regression for Mechanism of Injury Predicting Likelihood of Presence of Concussion Symptoms Headache or Dizziness Note. MOI = Mechanism of Injury (Sport-Related Concussion, not Sport-Related Concussion), B SE Wald df p Odds 95% CI for Ratio Odds Ratio Lower Upper Headache MOI .928 .308 9.074 1 .003 2.529 1.383 4.626 Constant 1.289 .172 55.978 1 <.001 3.628 Dizziness MOI .252 .215 1.380 1 .240 1.287 .845 1.960 Constant .355 .144 6.091 1 .014 1.427 SE = Standard Error, df = degrees of freedom, CI = Confidence Interval  ...

... Racial Differences in Neighborhood Ratings and Social Cohesion at the National Level Taylor Underwood Thesis Submitted in partial fulfillment of the requirements for the degree Master of Arts in Applied Sociology in the Department of Sociology University of Indianapolis April 2023 _________________________________________ Colleen Wynn, Ph.D. Assistant Professor of Sociology, Advisor _________________________________________ Mary Moore, Ph.D. Professor of Sociology, Reader 1 ABSTRACT Many scholars have found racial differences in neighboring, social interaction, and neighborhood satisfaction at the neighborhood level. Neighborhood satisfaction can be dependent on the interactions residents have in the neighborhood. Neighborhood satisfaction can also be affected by neighborhood conditions, social cohesion, and social control. My research asks, how does neighborhood satisfaction vary by race and ethnicity across the United States? Does collective efficacy impact satisfaction levels? I use data from the 2013 American Housing Survey (AHS) to explore racial and ethnic variation in neighborhood satisfaction in a series of Ordinary Least Square Linear Regression Models. I find that neighborhood satisfaction varies by race and ethnicity, and social cohesion impacts satisfaction levels. 2 INTRODUCTION Historically, minorities have always had constraints on their social options due to less access to resources, social opportunities, and information (Lee, Campbell, Miller 1991). Black people have had to ultimately create their own communities due to institutionalized racism throughout the United States (Lee, Campbell, and Miller 1991: Hunter and Robinson 2018). Black and Brown people have been in continuous search for places and communities to be free, safe, and able to fully express themselves and embrace their culture and identity since enslavement (Hunter and Robinson 2018). Black people have formed their own communities and are connected in the United States by geography and the characteristics of their communities (Hunter and Robinson 2018). Black residents in these communities are connected through common problems they face and the location of the neighborhood (Hunter and Robinson 2018). These communities are often full of life but economically constrained (Hunter and Robinson 2018; Lee, Campbell, and Miller 1991; Guest and Wierzbicki 1999; Peters, Finney and Kapadia 2019). These individuals can connect to each other and embrace one another through shared backgrounds, cultures, hardships, constant inequalities, and ultimate triumph in the form of these communities. (Hunter and Robinson 2018). This persistent inequality has led to varying outcomes by race and ethnicity. This has also led researchers to explore neighborhood outcomes by race and ethnic identity. Many researchers have focused on various topics revolving around specific neighborhoods in the United States. While many scholars have found racial differences in neighboring and social interaction in the community (Lee, Campbell, and Miller 1991; Small 2007; Stack 1974), many of these studies compare just Black and White residents in neighborhoods. There is a lack of research on differentiating other races and ethnicities with neighborhood satisfaction around the United 3 States. My research will attempt to fill this gap by exploring if and how neighborhood satisfaction varies by race and ethnicity using data from the American Housing Survey. My research asks two main questions. First, how does neighborhood satisfaction vary by race and ethnicity across the United States? And does collective efficacy impact neighborhood satisfaction levels? LITERATURE REVIEW Neighborhood Satisfaction Residential satisfaction can play an important role in successful housing policies (Lu 1999 and Warren 1975). Being satisfied in your community is very important for everyday life (Lu 1999). To improve communities around the United States, it is crucial to understand where the gap of dissatisfaction lies. Neighborhood satisfaction can help us understand more about the needs of the community and the behaviors of residents (Dahmann 1985; Lu 1999). If scholars and policymakers can understand which groups of people are dissatisfied with their community, it leaves room to focus on neighborhoods that need improvement (Parkes, Kearns, and Atkinson 2002). To truly understand why residents might be dissatisfied with their neighborhoods, policymakers and researchers must understand what is most important to the residents (Parkes, Kearns and Arkinson 2002). It is extremely important that we take into consideration the opinions of the residents (Parkes 2002). These are the people who live in the community, and they ultimately know what does and does not work in their neighborhood. Multiple different studies have explored why residents are dissatisfied with their current community. Many scholars have found that urban residents are generally more dissatisfied with their neighborhoods when they have less established social networks (Kasarda and Janowitz 1974; Parkes, Kearns, and Arkinson 2002; Sampson 1991). The extent of social ties is a crucial 4 variable influencing neighborhood satisfaction levels (Cirorci and Dantzler 2018; Parkes, Kearns, and Arkinson 2002; Sampson 1991). According to scholars, residents are also more likely to report being dissatisfied with their community based on the judgments they make about their neighborhood and due to their housing aspirations (Lu 1999; Ringel and Finkelstein 1991). Therefore, when neighborhoods do not meet their housing aspirations, residents are more judgmental of the neighborhood and less satisfied (Lu 1999; Grogan-Kaylor et al. 2006; Lu 1999; Ringel and Finkelstein 1991). Not only do poor judgments about the community contribute to the satisfaction of residents, but crime and the physical environment are also associated with decreased neighborhood satisfaction (Grogan-Kaylor et al 2006). Neighborhood Problems and Neighborhood Conditions By the same token, increased criminal activity decreases satisfaction in the community (Grogan-Kaylor et al. 2006; Perry 2017). The growth of disorderly conduct in communities has ultimately deepened the impoverishment levels of communities across the country, which affects residents' neighborhood satisfaction (Rankin and Quane, 2000). Adams (1992) found that perceived safety was the most important determinant of satisfaction levels. Safety is essential in predicting neighborhood satisfaction (Adams 1992, Parkes, Kearns, and Atkinson 2002, Sampson 1991; Grogan et al. 2008). Like disorderly conduct in the neighborhood, neighborhood problems are an additional variable affecting neighborhood satisfaction. According to Parkes (2002), exposure to neighborhood problems can be a critical predictor in determining if residents will continue to reside in these neighborhoods and in predicting neighborhood satisfaction. According to Parkes (2002), exposure to problems, social interaction, and neighborhood expectations are all factors that contribute to satisfaction levels. On the contrary, less exposure to disorderly conduct, fewer 5 community problems, and increased cohesiveness among neighborhood residents will more than likely increase overall satisfaction in the neighborhood. In addition, Kassandra and Jenkins (1974) have found that if local neighborhood conditions do not satisfy the needs of the residents, then residents are more likely to leave the neighborhood. Neighborhood conditions or physical features in the neighborhood can deter residents from the neighborhood. Residents may leave the neighborhood or be less satisfied with the neighborhood due to the physical attractiveness of the neighborhood conditions (Kasarda and Janowitz 1974). Social Cohesion/ Social Interaction in the Community In strong communities around the United States, a sense of social support in the neighborhood is a predictor of being more satisfied in the community (Dassopoulos, Batson, Futrell, and Brents 2012; Sampson 1991; Lee, Campbell, and Miller 1991; Parkes, Kearns and Atkinson 2002). The types of social ties in the community can gauge the stability of communities (Guest and Wierzbicki 1999). Many scholars have explained/determined that this sense of community in the neighborhood is created through social interaction-- or neighboring (Kasarda and Janowitz 1974). Since the 1970s, social researchers have coined the term neighboring in reference to individual interactions based on how close one lives to one another (Kasarda and Janowitz 1974). Neighborliness is the concept of social cohesion in the neighborhood (Dassopulos, Batson, Futrell, and Brents 2012). Neighborhoods with strong social ties will exchange small services; for example, residents are willing to help each other, neighbors would do something if a fight broke out, shared trust, etc. (Dassopulos, Batson, Futrell, and Brents 2012). These connections in the neighborhood are mainly based on community ties, not 6 necessarily because someone expects to receive something in return (Dassopulos, Batson, Futrell, and Brents 2012). Guest and Wierzbicki (1999) spent 22 years researching how social interaction in the neighborhood changes over time. The data found suggested that there is a lot less socialization within the community and an increase in social interaction outside of the community (Guest and Wierzbicki 1999). Therefore, over time, there has been a decline in social interaction among neighbors (Guest and Wierzbicki 1999). Residents who live in poverty are less likely to have local social ties due to the limitations of what resources and knowledge are available to them (Guest and Wierzbicki 1999; Peters, Finney, and Kapadia 2019). Based upon the suggestions of previous research, residents from impoverished communities are less likely to be satisfied with their community (Peters, Finery and Kapadia 2019). Additionally, there is a decline in social ties in the neighborhood that can also be dependent upon different demographic variables, such as age, socioeconomic status, race, ethnicity, and education level. The literature has been consistent with many racial differences and disparities in urban neighborhoods around the United States. More specifically, Black residents are more likely to interact with their neighbors daily, therefore, creating a more casual neighboring relationship (Lee, Campbell, and Miller 1991). Small (2007) found that Black residents have constructed fewer social ties outside their family dynamics. Even though Black residents may have fewer social ties, they tend to have strong social support among their networks (Stack 1974). In contrast, White residents are more likely to have more formal and shorter conversations with their neighbors and are less likely to interact with them daily (Lee et al. 1991). Fewer studies examined social cohesion and interaction among Latinos and Asians in American neighborhoods. Most researchers have compared Black and White residents. The few studies that 7 have explored Latino social ties find that Latinos have had larger social networks and stronger social ties in the community compared to Black residents (Almeida, Kawachi, Molnar and Subramanian 2009; Small, 2007; Klinenberg, 2002). Social Control Having a sense of social control in a neighborhood could potentially be a factor in how residents might rate their neighborhoods. This mostly stems from the consistent change within a metropolitan city and the modern meaning of community (Sampson 2003). More so, social control is the idea that there is a common value in the community and for residents to maintain efficiency in the neighborhood (Sampson, Raudenbush, and Earls 1997). Sampson (1997) has identified social control as a response to the deviant behaviors of the residents in the community. This is not the idea that social control is affiliated with larger structural institutions but rather that residents share similar philosophies or have some type of control in social situations in the neighborhood (Sampson et al. 1997). More specifically, it is the objective to have control over the visible signs of social disorder in the community (Sampson et al. 1997; Sampson 2003). For example, residents who have social control in their neighborhood will intervene in children painting graffiti or may scold a disrespectful child. Therefore, at the neighborhood level, social control is the general idea that residents are intervening in social situations for the common good of the neighborhood (Sampson et al. 1997). Socioeconomic Status and Community Engagement Social ties and community engagement vary by socioeconomic status, with higherincome residents being more likely to participate in neighborhood events (Campbell and Lee 1990). Residents who socialize in their neighborhood may be more likely to be highly satisfied with their community. Additionally, residents who have a higher level of education and a high 8 level of income have an extensive number of social resources and social opportunities compared to residents who live in poverty, resulting in larger social networks they can take advantage of (Campbell and Lee 1990). Many scholars agree that impoverished communities can be associated with poor education, higher crime rates, and unemployment (e.g., Brisson, Roll, and East 2009). Scholars have emphasized that increasing diversity in impoverished communities may exploit less advantaged residents in the community (Tach 2014; Jencks and Mayer, 1990; Joseph, Chaskin, and Webber 2007). Increasing diversity in impoverished communities exposes residents to different perspectives and lifestyles (Perry 2016) impoverished communities tend to lack access to social networking opportunities due to not having the knowledge or resources to network in the community (Tach 2014). Resulting in residents having to rely more heavily on their neighbors for survival (Stack 1974). Not having access to a diverse network of residents in the community is an additional factor contributing to racial inequality in the United States (Small 2007). While there is not one clear answer as to why or how this happens, there is clear evidence that neighborhood social capital and neighborhood conditions can contribute to different types of networking in the community (Small 2007; Lee et al. 1991). Homeownership and Length of Residence While there is very limited research on the sociological perspective of neighborhood satisfaction, some scholars have found that homeownership and length of residence contribute to neighborhood satisfaction (Parkes, Kearns and Atkinson 2002; Sampson 1991). Scholars have found that there is limited evidence supporting the ties between these variables, but there is some evidence that states that there is a positive correlation between homeownership and length of 9 residence being predictors of neighborhood satisfaction (Lu 1999; Parkes, Kearns, and Atkinson 2002). THEORETICAL FRAMEWORK Collective Efficacy As previously mentioned, many residents prefer to have some type of control over their neighborhoods for the common good. While some residents want control in their neighborhood, social interaction at the neighborhood level is also changing (Sampson 2003; Guest and Wierzbicki 1999). As discussed above, Guest and Wierzbicki (1999) find social ties within the community are decreasing over time therefore, the community level environment is not as collective as one might think (Sampson 2003). Therefore, due to this decline of the modern meaning of community, some scholars have proposed the idea of collective efficacy (Sampson et al. 1997; Sampson 2003). Collective efficacy has been used as a theoretical framework to forecast positive community outcomes (Sampson 2012; Gerhard 2019). Sampson (1997) developed this model using data from the Project on Human Development in Chicago Neighborhoods. Sampson (1997) created this model based on the highly correlated measures of social cohesion and social control and coined the term collective efficacy (Sampson et al. 1997; Sampson 2003). Sampson (2003) compares collective efficacy to self-efficacy, in the realm that it is relative to a specific objective, whereas collective efficacy is that neighborhood efficacy is relative to a shared objective of the neighborhood. These scholars have put an emphasis on the functionality of mutual trust and cohesive willingness at the neighborhood level (Sampson et al. 1997; Sampson 2003). The willingness of neighbors to share expectations and trust with the influence of social ties is the idea of collective efficacy. Collective efficacy is the notion that 10 residents at the neighborhood level have shared beliefs to achieve an intended effect (Sampson 2003). Theory of Limited Liability As previously mentioned, minorities lack social resources and the ability to invest within their community (Guest and Wierzbicki 1999; Peters, Finney, and Kapadia 2019; Lee, Campbell, and Miller 1991). Many scholars have found that residents who live in poverty are less likely to have local social ties due to the limitations of what resources and knowledge are available to them (Guest and Wierzbicki 1999; Peters, Finney, and Kapadia 2019; Lee, Campbell, and Miller 1991). Social ties in the community can gauge the stability of urban communities across the nation (Guest and Wierzbicki 1999). If communities lack social cohesion due to poverty and resources, then ultimately, they are also going to be dissatisfied with their community overall (Kasarda and Janowitz 1974; Parkes, Kearns, and Arkinson 2002). This theory suggests that involvement with neighbors and the community will vary over time and across households, although this is dependent upon the degree of one's investment in the neighborhood (Greer 1962 and Lee, Campbell, and Miller 1991). The investment is not only monetary value, but the degree to which one is involved in the community is also seen as an investment (Greer 1962 and Lee, Campbell, and Miller 1991). According to Lee (1991) and other scholars, ones investment in the community can vary depending on judgments of the community and how much residents may feel that their investment is at stake (Lu 1999; GroganKaylor et al. 2006). What scholars mean by this is that if residents feel as if they are at risk or have concerns about the community or their safety, residents may be hesitant to invest their time and money in the community (Lee, Campbell, and Miller 1991; Lu 1999; Grogan-Kaylor et al. 2006) 11 Greer (1962) divides this model into sections, the first being the neighborhood itself. Greer (1962) puts an emphasis on investing in relationships within the neighborhood. It is explained that each household varies based upon their housing units, however, it is important for neighbors to have casual interaction that could lead to more personal friendships (Greer 1962). The second section Greer (1962) references is the local residential area. Greer (1962) explains this to be the involvement in the larger community where residents can create broader connections in the community. These broader connections could be, being in a common space for everyday activities (like a park, playground, or the sidewalks) and being connected to the community-oriented associations (being a participant in these organizations can increase social cohesion of the community) (Greer 1962). Furthermore, I have used the theory of limited liability to help guide my research and findings, but it is not a determining factor in my research. METHODS Data The data comes from the 2013 American Housing Survey (AHS). The AHS is sponsored by the Department of Housing and Urban Development; however, the survey is conducted by the U.S Census Bureau. The American Housing Survey uses a probability sample of close to 50,000 housing units around the United States (AHS 2022). The AHS surveys housing units every other year. The AHS is a broad national housing survey in the United States that provides a wide range of housing subjects revolving around financing and maintaining homes, people who live in those homes, physical conditions of homes, physical conditions of neighborhoods, and characteristics of the people living in the neighborhoods (AHS). While the 2013 AHS data are almost ten years old, they remain the only comprehensive national data that includes measures of both social cohesion and neighborhood satisfaction variables. My analysis measures social cohesion, 12 neighborhood satisfaction, and sociodemographic variables to explore if there is racial and ethnic variation in neighborhood satisfaction and social ties. MEASURES Dependent variable The dependent variable throughout my analyses is neighborhood satisfaction, measured by neighborhood rating as the dependent variable in all models. Neighborhood satisfaction is measured by a respondents self-reported neighborhood rating of their neighborhood as a place to live from 1 (worst) to 10 (best). Independent variables Race and ethnicity are the key independent variable in all of the models. I use the householder's self-reported racial and ethnic identity. One weakness of this approach, however, is that it obscures multi-racial households in the analysis. racial and ethnic identity was created from the respondent's answers to two questions. First, they are asked if they are Hispanic (yes/no). Respondents who respond affirmatively have been coded as Hispanic in my analyses. If respondents do not identify as Hispanic, then I have used their response to the racial identity question to establish their racial and ethnic identity. Here respondents are asked if they are NonHispanic White, Non-Hispanic Black, and Non-Hispanic Asian (hereafter White, Black, and Asian). I have created dummy variables for five racial and ethnic categories, White, Black, Hispanic, Asian, and other Races--with White being the reference category throughout the multivariate analyses. To assess collective efficacy more clearly, I have used social cohesion as another key independent variable. The 2013 AHS includes a series of questions about social cohesion components. I have combined the social cohesion variables to create a single outcome variable of 13 social cohesion among respondents. Respondents were asked to rate (strongly agree, somewhat agree, somewhat disagree, strongly disagree) the social cohesion variables (neighborhood is close knit, people in neighborhood get along, people are willing to help their neighbors, people share the same values, and people in the neighborhood can be trusted). These variables are reverse coded (0 = strongly disagree, 1 = disagree, 2 = agree, and 3 = strongly agree). Social cohesion (=0.88) ranges from 0-15, with higher scores indicating more cohesion in the neighborhood. I have also combined a series of social control variables to have one single outcome variable to assess collective efficacy. Respondents were asked to rate (strongly agree, somewhat agree, somewhat disagree, strongly disagree) the social control variables (neighbor would step in if saw fighting near home, neighbor would step in if saw child not in school, neighbor would step in if saw child painting graffiti, and neighbor would scold a disrespectful child). Like the social cohesion variables, these variables are reverse coded (0 = strongly disagree, 1 = disagree, 2 = agree, and 3 = strongly agree). Social control (= 82) ranges from 0-12, with higher scores indicating more social control at the neighborhood level. Control variables I have included a series of control variables that have been shown in the literature to be related to neighborhood satisfaction and neighborhood social ties. I have used the neighborhood conditions and neighborhood problems variables to assess the correlation more clearly with neighborhood satisfaction. These variables include a series of dummy variables for satisfaction with neighborhood police protection (0=yes, 1= no); abandoned buildings, trash, litter, or junk in the streets and roads (0=yes, 1= no); and buildings with bars on the windows (0=yes, 1= no). I also use a series of dummied control variables exploring the types of relationships and 14 connections in the neighborhood, sometimes called social ties. These variables are as follows, household member belongs to a neighborhood group (0= yes, 1= no), household member has attended a neighborhood meeting (0= yes, 1= no), household member has spoked to a local politician about a neighborhood problem or improvement (0= yes, 1= no), household member has friends in the neighborhood (0= 0-5 friends, 1= 6-10 or more friends); and household member has talked with a neighbor in the last month for 10 or more minutes (0=yes, 1=no). Finally, I include a series of sociodemographic control variables, including a series of dummies for the marital status of the householder (married (reference), widowed, divorced/separated, and never married); Sex of Householder (0= Male, 1= female); a series of dummies for the level of education of the householder ( less than high school, high school diploma, some college, bachelor's degree or higher (reference)), year householder moved in, and presence of children under 18 (0=no household residents under 18, 1=at least one household resident under 18), annual household income (in ten thousands), receipt of public assistance (0=yes 1=no), region (Northeast, South, West, and Midwest), household located in a central city (0=yes, 1=no), householder age, and if the householder is foreign-born (0=yes, 1=no). Analytic Strategy I use an ordinary least squares linear regression analysis for all models. This type of regression analysis allows me to analyze the relationship between the dependent, independent, and control variables. I used a weighted analysis for the sample to be nationally representative. All analyses are conducted using STATA/BE 17. Neighborhood satisfaction is the dependent variable in all the models. Model 1 explores the relationship between racial and ethnic variation and neighborhood satisfaction. Model 2 adds the key independent variable of social cohesion and the social control index. Model 3 adds the 15 neighborhood conditions variables. Model 4 adds controls for social ties/ relationships in the neighborhood. Model 5 includes the independent variable, dependent variable, and all the control variables, including the demographic variables. RESULTS Descriptive Statistics Table 1 represents the descriptive statistics (mean, standard deviation, minimum and maximum values) for each dependent, independent, and control variable. The sample size is 22,416 respondents. The sample consists of 65% White, 14% Black, 4% Asian, 13% Hispanic, and 1% other race: with a mean age of 52 years of age. The sample is composed of 22% single respondents, 49% married, 10% widowed, 15% divorced, and 3% separated. While 50% of the sample identifies as female. Moreover, 14% of respondents have less than a high school diploma, 25% have a high school diploma, 29% some college, and 32% have a bachelor's degree or higher. Respondents reported which region of the United States they reside in, 26% in the Northeast, 27% in the Midwest, 30% in the South, and 18% in the West. In the sample, 33% of the respondents live in a central city. The mean neighborhood satisfaction level is 8.07 (rated 1-10). The mean social cohesion among the sample is 11.16 (range 0-15), and the mean social control score of respondents is 8.08 (range 0-12). Next, looking at the neighborhood conditions variables, 92% of respondents report satisfaction with police in their neighborhood, 9% report there is trash, litter, or junk in the streets and roads within block, 10% of the respondents report that there are buildings with bars on the windows, 3% have abandoned/vandalized building within block, and finally 41% report a lack of green space in the neighborhood. 16 Finally, regarding the types of connections in the neighborhood, 11% of neighborhood members belong to a neighborhood watch group, 16% of household members have spoken with a local politician about a neighborhood problem or improvement, 36% of household members have friends in the neighborhood, 84% of household members have talked with a neighbor in the last month for ten or more minutes, 16% of household members participated in solving a neighborhood problem, and 10% of household members have spoken with a person or group causing a neighborhood problem. Table 1: Descriptive Statistics, American Housing Survey (2013) N = 22,416 Standard Minimum Maximum Mean Deviation Value Value Neighborhood Rating 8.07 1.88 1 10 Race and Ethnicity 1.62 1 1 5 White 0.65 0.47 0 1 Black 0.14 0.35 0 1 Asian 0.04 0.21 0 1 Hispanic 0.13 0.33 0 1 Other Race 0.01 0.13 0 1 Social Cohesion 11.16 3.37 0 15 Neighborhood is close knit 2.04 0.88 0 3 People in neighborhood get along People in neighborhood are willing to help neighbors 2.41 0.69 0 3 2.34 0.76 0 3 Neighbors share the same values 2.14 0.82 0 3 People in neighborhood can be trusted 2.21 0.84 0 3 Social Control Neighbor would step in if saw child not in school Neighbor would step in if saw child painting graffiti 8.08 2.95 0 12 1.80 0.97 0 3 2.35 0.86 0 3 Neighbor would scold a disrespectful child Neighbor would step in if saw fighting near home 1.62 0.97 0 3 2.32 0.84 0 3 17 Table 1, continued: Descriptive Statistics Mean Standard Deviation Satisfaction with police protection Trash, litter, or junk in the streets and roads within 1/2 block 0.92 0.27 0 1 0.09 0.28 0 1 Buildings with bars on the windows Abandoned/vandalized buildings within 1/2 block 0.10 0.30 0 1 0.03 0.18 0 1 Lack of green space 0.41 0.49 0 1 0.11 0.31 0 1 0.13 0.34 0 1 0.16 0.36 0 1 0.36 0.48 0 1 0.84 0.37 0 1 0.16 0.37 0 1 0.10 0.31 0 1 Single (Not Married) 0.22 (22%) 0.41 0 1 Married 0.49 (49%) 0.50 0 1 Widowed 0.10 (10%) 0.31 0 1 Divorced 0.15 (15%) 0.36 0 1 Separated 0.03 (3%) 0.17 0 1 Female 0.50 (50%) 0.50 0 1 Less than High School 0.14 (14%) 0.35 0 1 High School Diploma 0.25 (25%) 0.43 0 1 Some College 0.29 (29%) 0.45 0 1 Bachelors Degree or Higher 0.32 (32%) 0.47 0 1 TYPES OF CONNECTIONS Neighborhood member belongs to a neighborhood watch group Household member has attended a neighborhood meeting Household member has spoken with a local politician about a neighborhood problem or improvement Household member has friends in the neighborhood Household member has talked with a neighbor in the last month for 10 or more minutes Household members has participated in solving neighborhood problem Household member has spoken with a person or group causing neighborhood problems Minimum Maximum Value Value DEMOGRAPHICS 18 Table 1, continued: Descriptive Statistics Mean Standard Deviation Year householder moved in Number of householder's children under 18 years 12.27 13.07 0 94 0.30 (30%) 0.46 0 1 6.82 7.71 0 106.1921 Receipt of public assistance 0.03 (3%) 0.16 0 1 Northeast 0.26 (26%) 0.44 0 1 Midwest 0.27 (27%) 0.44 0 1 South 0.30 (30%) 0.46 0 1 West 0.18 (18%) 0.38 0 1 Central City/ Metropolitan Area 0.33 (33%) 0.47 0 1 Foreign born 0.15 (15%) 0.36 0 1 Housing Tenure 0.60 (60%) 0.48 0 1 52 17.22 14 93 Householder Income (In ten thousand) Householder age (years) Minimum Maximum Value Value OLS Regression Table 2.1, Model 1, explores variation in neighborhood satisfaction by race and ethnicity. In all models with race, White is the reference category. In Model 1, relative to White respondents, respondents of all other racial and ethnic groups report lower satisfaction. Asian respondents report the lowest satisfaction (-0.990), followed by Black respondents (-0.6399), then those of another race (-0.4737), and Hispanic respondents (-0.2533). Model 2 adds controls for collective efficacy (social control and social cohesion). Black respondents (-0.2552) and those of another race (-0.2385) still report lower satisfaction than White respondents. Hispanic and Asian respondents, however, are no longer statistically different from White respondents after controlling for collective efficacy. When social control (0.0537) and social cohesion (0.2468) are greater, respondents also report more neighborhood satisfaction. 19 Table 2.1: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 1 Coefficient/ (s.e.) White (reference category) Black Asian Hispanic Other Race -0.6399 *** (0.0492) -0.0990 (0.0587) -0.2533 *** (0.0464) -0.4737 *** (0.1210) Social Control Social Cohesion Constant F-Statistic R-Squared 8.2502 *** (0.0161) 48.76 *** 0.0149 Model 2 Coefficient/ (s.e.) -0.2552 (0.0419) 0.1011 (0.0549) 0.0154 (0.0420) -0.2385 (0.1056) 0.0537 (0.0055) 0.2468 (0.0052) 4.9316 (0.0623) *** * *** *** *** 612.28 *** 0.2618 * p < 0.05, ** p < 0.01, *** p < 0.001; White race is the reference category in all models Model 3, Table 2.2 adds controls for neighborhood conditions. Black respondents report less neighborhood satisfaction (-0.1189) than their White counterparts. This relationship has been somewhat attenuated by the addition of controls for neighborhood conditions. After controlling for neighborhood conditions, Asian (0.1267) and Hispanic (0.1433) residents rate their neighborhood more highly than White respondents. As was seen in Model 2, when social cohesion (0.2468) and social control (0.0537) are greater, neighborhood satisfaction is greater. Residents who are more satisfied with police in their neighborhood (0.7072) report higher neighborhood satisfaction. However, when there is trash, junk, and litter in the streets or roads 20 within block (-0.9586), buildings with bars on the windows (-0.2565), and when there are abandoned/vandalized buildings within block of the residence (-0.4173), respondents report lower neighborhood satisfaction. Surprisingly, when there is a lack of green space (0.1350) in the neighborhood, residents tend to be more satisfied with their neighborhood. Model 4, Table 2.2 adds controls for neighborhood connections and social ties in the neighborhood. Even after these controls are applied, Black respondents (-0.1115) report less satisfaction with their neighborhoods compared to White residents. However, Asian (0.1267) and Hispanic (0.1433) respondents report higher levels of neighborhood satisfaction relative to White respondents. When residents report more social cohesion (0.2214), social control (0.0435), and greater satisfaction with the police in their neighborhood (0.7072), their neighborhood satisfaction is higher. Conversely, when residents report that there is trash, junk, or litter in the streets or roads within 12 block (-0.9394), buildings with bars on the windows (-0.2522), and/or presence of abandoned/vandalized buildings within block (-0.4034), they report lower neighborhood satisfaction. When there is a lack of green space, neighborhood satisfaction is greater (0.1382). However, when residents report that they belong to a neighborhood watch group (0.0915) and residents have friends in the neighborhood (0.1389) they report being more satisfied with their neighborhood. When the household member has spoken to a person or group causing a neighborhood problem (-0.2715) they are more likely to be less satisfied with their neighborhood. No other controls are significant. 21 Table 2.2: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 3 Coefficient/ (s.e.) Model 4 Coefficient/ (s.e.) White (reference category) Black -0.1189 ** (0.0406) Asian 0.1267 * (0.0544) Hispanic Other Race Social Control 0.1433 *** (0.0547) 0.1394 ** -0.1167 -0.1030 (0.1011) (0 .1020) 0.0435 *** 0.2214 *** 0.7072 *** (0.0583) Trash, litter, or junk in the streets and roads within 1/2 block 0.1167 * (0.04051) (0.0052) Satisfaction with police protection (0.0407) (0.0404) (0.0053) Social Cohesion -0.1115 ** -0.9586 *** 0.0456 *** (0.0053) 0.2176 *** (0.0054) 0.6857 *** (0.0585) -0.9394 *** (0.0569) (0.0566) Buildings with bars on the windows -0.2565 *** (0.0490) -0.2522 *** (0.0489) Abandoned/vandalized buildings within 1/2 block -0.4173 *** (0.0743) -0.4034 *** (0.0744) Lack of green space 0.1350 *** (0.0242) 0.1382 *** (0.0242) Neighborhood member belongs to a neighborhood watch group Household member has attended a neighborhood meeting 0.0915 * (0.0377) 0.0477 * p < 0.05, ** p < 0.01, *** p < 0.001; White race is the reference category in all models 22 Table 2.2 continued: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Household member has spoken with a local politician about a neighborhood problem or improvement -0.0357 (0.0341) Household member has friends in the neighborhood 0.1389 *** (0.0261) Household member has talked with a neighbor in the last month for 10 or more minutes -0.0677 (0.0374) Household members has participated in solving neighborhood problem -0.0750 (0.0395) Household member has spoken with a person or group causing neighborhood problems -0.2715 *** (0.0436) Constant 4.667 *** (0.0788) 4.7460 *** (0.0812) F-Statistic 426.28 *** 270.77 *** R-Squared 0.3039 0.3077 * p < 0.05, ** p < 0.01, *** p < 0.001; White race is the reference category in all models Finally, Model 5, Table 2.3 is the full model and adds demographic variables. In this model, the only racial and ethnic group that significantly differs from White respondents on neighborhood satisfaction is Hispanic respondents (0.1829), who report more neighborhood satisfaction. As was seen in the previous models, when residents report more social cohesion (0.2110) and social control (0.0464) they also report more neighborhood satisfaction. Additionally, as seen in the previous models, when residents are more satisfied with the police 23 (0.6587), they report more neighborhood satisfaction. Whereas residents who report that there is trash, junk, or litter in the streets or roads within block (-0.8891), buildings with bars on the windows (-0.2274), and/or the presence of abandoned/vandalized buildings within block (0.3856), report lower neighborhood satisfaction. The lack of green space (0.1394) continues to have a positive correlation with neighborhood satisfaction. Household members who have reported to have spoken with a local politician about a neighborhood problem or improvement (0.0746) have a negative relationship with neighborhood satisfaction. When a household member has friends in the neighborhood (0.1136) they continue to rate their neighborhood more positively. When household members report that they have talked with a neighbor in the last month for ten or more minutes (-0.0724) or have spoken with a person or group causing neighborhood problems (-0.2576) they have a negative correlation with neighborhood satisfaction. Relative to married respondents, those who are divorced (-0.1461) or separated (-0.1963) report lower neighborhood satisfaction. Women report more neighborhood satisfaction (0.0864) than men do. Relative to respondents that have a bachelor's degree or higher, those with less than a high school degree (-0.0265), high school diploma (-0.0978), and some college (-0.0978) all report lower neighborhood satisfaction. When the duration of the residence increases (-0.0057), neighborhood satisfaction decreases. Respondents who report having at least one child under the age of 18 years (-0.1083) report lower satisfaction. As household income (0.0080) increases, neighborhood satisfaction also increases. Household members who receive public assistance (0.0618) report less satisfaction. Satisfaction also varies by region. Respondents in the Midwest (0.0407) and West (-0.0573) report lower satisfaction than those in the South. Those living in the Northeast report greater neighborhood satisfaction (0.0264) than those in the South. Living in a 24 central city decreases neighborhood satisfaction (-0.1595). Householders who are foreign born (0.1216) report greater neighborhood satisfaction. Finally, as age (0.0100) increases, so does neighborhood satisfaction. No other controls are significant. Table 2.3: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 5 Coefficient/ (s.e.) White (reference category) Black -0.0550 (0.0421) Asian 0.0595 (0.0643) Hispanic 0.1829 *** (0.0471) Other Race -0.0420 (0.1008) Social Control 0.0464 *** (0.0053) Social Cohesion 0.2110 *** (0.0054) Satisfaction with police protection 0.6587 *** (0.0584) Trash, litter, or junk in the streets and roads within 1/2 block -0.8891 *** (0.0565) Buildings with bars on the windows -0.2274 *** (0.0501) Abandoned/vandalized buildings within 1/2 block -0.3856 *** (0.0737) Lack of green space 0.1394 *** (0.0240) Note: * p < 0.05, ** p < 0.01, *** p < 0.001; White race, Married Couples, and South is the reference category in all models. 25 Table 2.3 continued: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 5 Coefficient/ (s.e.) Neighborhood member belongs to a neighborhood watch group Household member has attended a neighborhood meeting 0.0691 (0.0375) 0.1298 (0.0412) Household member has spoken with a local politician about a neighborhood problem or improvement -0.0746 * (0.0343) Household member has friends in the neighborhood 0.1136 *** (0.0264) Household member has talked with a neighbor in the last month for 10 or more minutes -0.0724 * (0.0373) Household members has participated in solving neighborhood problem -0.0634 (0.0390) Household member has spoken with a person or group causing neighborhood problems -0.2576 *** (0.0432) Single (Not Married) -0.1132 (0.0390) Married Widowed Reference Category 0.0700 (0.0466) Divorced -0.1461 *** (0.0381) Separated -0.1963 * (0.0914) Female 0.0864 *** (0.0250) Note: * p < 0.05, ** p < 0.01, *** p < 0.001; White race, Married Couples, and South is the reference category in all models. 26 Table 2.3 continued: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 5 Coefficient/ (s.e.) Less than High School -0.0265 (0.0468) High School Diploma Some College -0.0480 (0.0332) -0.0978 *** (0.0295) Bachelors Degree or Higher Year householder moved in Reference Category -0.0057 *** (0.0011) Number of householder's children under 18 years -0.1083 *** (0.0321) Householder Income 0.0080 *** (0.0014) Receipt of public assistance -0.0618 (0.1021) Northeast 0.0264 (0.0330) Midwest -0.0407 (0.0308) South Reference Category West -0.0573 (0.0338) Central City/ Metropolitan Area -0.1595 *** (0.0282) Foreign born 0.1216 ** (0.0445) Housing Tenure -0.0310 (0.0332) Note: * p < 0.05, ** p < 0.01, *** p < 0.001; White race, Married Couples, and South is the reference category in all models. 27 Table 2.3 continued: OLS Regression showing relationship between Race and Neighborhood rating using 2013 American Housing Survey (AHS) N= 22,416 Model 5 Coefficient/ (s.e.) Householder age (years) 0.0100 *** (0.0010) Constant 4.475 *** (0.1042) F-Statistic 149.61 *** R-Squared 0.3213 * p < 0.05, ** p < 0.01, *** p < 0.001; White race, Married Couples, and South is the reference category in all models. DISCUSSION For this study, I used the approach of an Ordinary Least Squares regression model to test the research questions: how does neighborhood satisfaction vary by race and ethnicity across the United States? And does collective efficacy impact neighborhood satisfaction level? I hypothesize that respondents' neighborhood satisfaction will vary by racial and ethnic identity and that neighborhood satisfaction will vary by collective efficacy. More specifically, examining the research question how does neighborhood satisfaction vary by race and ethnicity across the United States? neighborhood satisfaction does indeed vary by race and ethnicity throughout all the models. Black respondents consistently rated their neighborhood more negatively relative to White respondents in Models 1-4 however, once demographic controls were applied in Model 5, there was no longer a significant difference between Black and White neighborhood satisfaction. Asian respondents rated their neighborhood negatively compared to White respondents in Model 1. However, after controlling for social cohesion and social control (collective efficacy) in Model 2, there is no significant difference 28 between Asian and White neighborhood satisfaction. When controls for neighborhood conditions are added in Model 3, Asian respondents reported more neighborhood satisfaction than their White counterparts. However, once demographic controls are added in Model 5, there is no significant difference between Asian and White neighborhood satisfaction. Hispanic respondents follow the same pattern as Asian respondents for neighborhood satisfaction. However, after demographic controls are applied in Model 5, there is still a significant difference between White and Hispanic satisfaction, with Hispanic respondents reporting more satisfaction than their White counterparts. Finally, examining respondents of another race, they are less satisfied with their neighborhood relative to White respondents in Models 1 and 2, but once controls for neighborhood conditions are applied in Model 3, they do not significantly differ from White respondents in the level of neighborhood satisfaction. While there is limited previous research on neighborhood satisfaction, my research aligns with similar results of other studies. Stack (1974) found that when Black residents have strong social support, their neighborhood satisfaction increases. My findings are consistent with Stack (1974) as well. In Model 2, when measures of collective efficacy are added, Black residents' neighborhood satisfaction levels increase, but they still rate their neighborhood more negatively than White residents. Additionally, Almeida et al. (2009) found that Latinos have stronger social ties in the community compared to black residents. I find that while Hispanic respondents may not significantly differ from White respondents when measures of collective efficacy are added, collective efficacy does increase satisfaction levels among Hispanic respondents. Next, my analyses explore the question, does collective efficacy impact neighborhood satisfaction levels? The simple response to this question is yes, collective efficacy does impact satisfaction levels across all races. In Model 1, respondents of all other races rate their 29 neighborhood more negatively than White respondents. When measures of social cohesion are added in Model 2, Asian and Hispanic respondents no longer significantly differ from White respondents. While in contrast, Black and other race respondents continued to report lower neighborhood satisfaction than White respondents. In Model 4, when controls for social cohesion, social control, neighborhood conditions, and neighborhood connections were present, Asian, and Hispanic respondents reported greater neighborhood satisfaction than White respondents. In contrast, Black respondents continue to be less satisfied with their neighborhood than their White counterparts. My analyses also use the Theory of Limited Liability, which suggests that involvement with neighbors and the community will vary over time and across households. However, this is dependent upon the degree of one's investment in the neighborhood (Greer 1962 and Lee, Campbell, and Miller 1991). The investment is not only monetary value, but the degree to which one is involved in the community is also seen as an investment (Greer 1962 and Lee, Campbell, and Miller 1991). I find that involvement within the neighborhood does vary, but I do not have enough evidence to say that this varies over time or across households, as these variables are currently only included in the 2013 AHS, so longitudinal analyses are not possible. However, my analyses demonstrate that the extent to which one is involved in their neighborhood impacts neighborhood satisfaction levels. As can be seen in Model 2, when respondents report more social control and social cohesion in the neighborhood, Asian and Hispanic respondents do not significantly differ from White respondents. In contrast, Black and other race respondents are less satisfied. Model 3 investigates social connections and investment in the neighborhood. Satisfaction levels increase when household members have friends in the neighborhood (0.1389) or belong to a neighborhood watch group (0.0915). In this theoretical perspective, Greer (1962) 30 puts an emphasis on investing time in the community and creating casual relationships in the neighborhood, which aligns with my findings. Therefore, when residents invest their time in the community and are connected to community-oriented associations, they are more likely to have higher levels of neighborhood satisfaction. Future research should look more closely at residents spending time in everyday activities like a park, playground, or sidewalks to determine if this impacts satisfaction levels. My analyses are not without limitations, however. One major limitation of my research study is that the data are ten years old. Even though the data are ten years old, they are still the only national data that include measures of social cohesion and neighborhood satisfaction. Future research should attempt to collect newer data that include measures of neighborhood satisfaction and social cohesion. Another limitation of my research is that there is no variable measuring neighborhood crime rate in the 2013 AHS. Future researchers should use a restricted version of the AHS that is geocoded to append crime rates to the AHS data to explore what, if any, impact crime rate has on neighborhood satisfaction, as other researchers have found crime can significantly impact satisfaction levels (Grogan-Kaylor et al. 2006). Despite these limitations, my analyses make several important contributions to the literature. There is limited research focusing on neighborhood satisfaction at the national level. Most researchers have focused on specific neighborhoods or cities (e.g., Chicago, Baltimore, and Atlanta). My analyses use a nationally representative dataset to explore satisfaction across US cities. Additionally, much of the research on neighborhood satisfaction is older. While my data are ten years old, they provide some updated information and remain the only nationally representative data with measures of neighborhood satisfaction and social cohesion. 31 In closing, I find that neighborhood satisfaction does vary by race and ethnicity. Once all controls are applied, only Hispanic respondents, who report greater satisfaction, differ from White respondents in their level of satisfaction. I also find that social cohesion and neighborhood social ties impact satisfaction levels, with those reporting more social cohesion and more friends in the neighborhood reporting more satisfaction, while those who report working on solving neighborhood issues report less satisfaction. Future research should continue to explore these relationships to better understand the mechanisms that lead to variation in neighborhood satisfaction. 32 REFERENCES Adams, Richard E. 1992. 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... Female and Fetal Personhood Andrea Renzi-Burns Thesis Submitted in partial fulfillment of the requirements for the degree Master of Arts in Applied Sociology Department of Sociology University of Indianapolis April 26, 2023 _____________________ Elizabeth Ziff, Ph.D. Assistant Professor of Sociology, Advisor __________________ Amanda Miller, Ph.D. Professor of Sociology, Reader Terminology Note A note on the terminology used in this thesis: I use the terms women and female as well as men and male to differentiate between the two genders, a very binary and outdated way to describe sex and gender. When I use the terms women or female within this document I am describing a person who can become pregnant. I personally believe in a more inclusive and less binary way to describe humans, but I write in this style to differentiate clearly between the two genders due to the issues of female and male bodies throughout our history, as well as the role of intersectionality that has led us to a place where we are today. Ideally, a less binary way of seeing humans will become the norm, and the historical issues I discuss in this research will be seen as historical failures and no longer applicable to our current society. Reflexive Statement I am extremely grateful to the many individuals who took the time to take this survey and share deeply personal and emotionally difficult experiences. Your honesty and openness is a gift to this research and shows the importance of giving a safe space to allow people to share. I write about historical issues and current issues pregnant bodies face, especially women of color in the U.S., not from a place of experience but from a place of research, readings, and desire to understand and be an ally. I am extremely passionate about female comradery and hopeful that the feminist movement is heading in the right direction of inclusion and acceptance of diverse experiences, opinions, and beliefs. As Audre Lorde (1979) says, It is learning how to take our differences and make them strengths. For the masters tools will never dismantle the masters house. Abstract The overturning of Roe v. Wade in the Dobbs v. Whole Womens Health decision by the Supreme Court in 2022 opened the ability for states to restrict abortion as a healthcare option for female bodies. Along with this change in federal law, fetal personhood laws are beginning to increase and become more common. The purpose of this study was to gauge the general publics understanding and opinions on the topics of female bodily autonomy and fetal personhood. To do this, I developed a Qualtrics survey with open-ended and closed-ended questions along with demographic questions to gather opinions and ideas about abortion, fetal personhood, and health care rights among others. Key findings from the survey include the complexities of individual perspectives regarding definitions, labels, and personal experiences. The results show the challenge of defining broadly used terms and the issues with using labels to form assumptions. Most importantly the results align with feminist theory in terms of amplifying lived experiences and the unique perspectives from the distinct standpoint of those who have experienced pregnancy, childbirth, or both. With the overturning of Roe v. Wade in the Dobbs v. Whole Womens Health decision in June 2022, the United States is in the midst of a massive change in healthcare options for female bodies and is facing a crisis of womens bodily autonomy. As of mid-April 2023, thirteen states have full bans on abortion; four states have partial bans; one state has a six-week ban; four states have a ban in place for 15,18, or 20 weeks; and eight states passed bans that are currently blocked by courts pending the outcome of litigation (The New York Times 2023). Fetal personhood, which is defined as the granting of legal rights to the unborn at conception or a couple of months after, is also becoming a key debated topic within society. The concern of these potential new personhood laws is that they could criminalize some types of contraception, pregnancy termination if it threatens a womans life, miscarriages, and abortions (Bloomberg 2022). As of April 1, 2023, two states have introduced legislation to ban abortion by establishing fetal personhood, and ten states have introduced legislation that criminalizes abortion for women or providers (Guttmacher Institute 2023). A federal personhood law entitled H.R.1011 - Life at Conception Act, which stated the right to life begins at fertilization, was introduced in 2021 in the U.S. House of Representatives, and though it did not pass, it had 166 cosponsors (Congress.gov 2021-2022)). Politically, the United States is very divided, and the growing divisions are pushed by the media and politicians narratives that can contrast with the general publics opinions on the topic of abortion (Pew Research Center 2022). While there are multiple well-respected surveys that have been conducted recently on the publics opinions on abortion access, such as the Pew Research Center and the Guttmacher Institute surveys, few surveys have been conducted on opinions of fetal and female personhood. This study is needed at this time in our history to give everyday people a voice to address some of these topics. The research aims to find out if and why there are differences in opinion based on personal characteristics, if individuals have changed their opinions throughout their lives, and if they are interested in hearing other thoughts, are open to potentially forming new opinions on the topics, or both. The research questions were: What is the publics opinion and understanding of female and fetal personhood, and has it changed over time? Do demographic and personal characteristics influence understanding and opinion on these topics? Are individuals open to others opinions as well as potentially changing their own? I addressed these by conducting an anonymous voluntary survey, with the parameters of being a resident of the U.S., and eighteen years or older. The proposed study design of a non-probability online survey with close-ended and open-ended questions gave both statistical data as well as rich descriptions as to the publics views and opinions on these topics, as well as their backgrounds and demographic characteristics. Though this research is not representative due to the limits with a non-probability online sample, it still adds important information to the body of knowledge on societys opinions, backgrounds, empathy, and openness within a turbulent time in our countrys history. Literature Review The term patriarchy is an ancient Greek term that literally means the rule of the father (OReilly 2010). In simple terms, patriarchy is the privileging of men in regard to the conditions of women (Feagin, Vera, & Ducey 2015). In our world today, this term stands for the social, political, and economic structures that create an inequality between those defined as men and those defined as women. This patriarchal structure is due to a set of beliefs, relationships, and values that have been embedded in our culture since ancient times (Nash 2020). This structure causes issues that will be discussed below such as female bodily autonomy, maternal mortality, obstetric gaslighting, and fetal personhood laws. Patriarchal Structure Reproduction from a Patriarchal Perspective Throughout western cultures history, the female body has been viewed as other (Bordo 1993). Historical depictions show humanity as male and allow man to define woman in relation to himself (de Beauvoir 1949). Due to the view of humanity as male and female as other, those identified as woman were never able to be fully autonomous given they were unable to define themselves (de Beauvoir 1949). The idea of woman as other contributes to the sexualizing of women and girls (Bordo 1993). Female identified bodies are valued and judged morally based on their sexuality and virginity (Valenti 2010). Women are seen as future mothers in the United States (Waggoner 2017), and culturally there is an understanding that reproduction only occurs in womens bodies (Almeling 2020). Bodily Autonomy Bodily autonomy is the right to ones person and is held at an extremely high value in the United States (Bordo 1993). Simply, it is the ownership and control of ones own body. Bodily autonomy is a human right and allows for integrity, privacy, and personhood (Bordo 1993), and both liberty and agency are required to exercise this right (Sedig 2016). Though bodily autonomy is a fundamental human right, it has not always been upheld the same way for different bodies. In legal and medical situations, some bodies are given conscious subject status and others are denied protection and simply seen as bodies without agency (Bordo 1993). Traditionally, an individuals independence has been the highest priority in American bioethics (Sedig 2016). To maintain ones human right to bodily autonomy in any kind of medical procedure, the individual is given the right to informed consent, and this right affords the individual the ability to agree or not agree to any procedure that would involve their body. Informed consent acknowledges that a human body must be treated with meaning, history, and value, and no one except the patient can determine for that body what medical risks or procedures are to happen (Bordo 1993). Informed consent came from Western medical ethics after the Nuremberg trials following the Holocaust and was codified into law in the U.S. in 1972 (Sedig 2016). Informed consent requires physicians to give individuals all the information needed along with all alternatives for the individual to make an independent decision (Sedig 2016). But informed consent is not always upheld in medical fields such as in reproductive care during pregnancy, labor, and/or delivery (Morris 2013). Differences in the application of informed consent have been studied in past literature such as by Bordo (1993). For example, in the 1979 court case of McFall v. Shimp, a male individual was asked to donate bone marrow to save a family members life (Bordo 1993). The individual refused the procedure to save his family members life after receiving informed consent, and his decision was upheld by the court due to his rights of bodily autonomy. The ruling even compared forcing this unwanted procedure to vampirism (Bordo 1993). In a different case a pregnant woman did not want to move forward with a recommended cesarean section due to religious beliefs and was forced to do so by the court against her will. In its ruling, the courts reasoning included not wanting to indulge in the desires of the pregnant woman at the expense of the fetus (Bordo 1993). As Bordo argues, because there is no rational reason for the difference in treatment of informed consent in these two court decisions, we must consider that law can be influenced by culture and ideologies (Bordo 1993). In addition, the violinist argument can also be applied. The violinist argument gives the example of a well-known violinist who has failing kidneys and needs another body to survive. The violinists right to life outweighs the others right to decide what happens to their body so they are made to be a donor for the violinist against their will (Thomson 1971). This argument acknowledges that a fetus is a human life, but that does not obligate another human life to keep that life alive (Thomson 1971). The debate on keeping a life alive is where maternal-fetal conflict can come into play, and the law can see a pregnant individuals interests in opposition to their fetus (Roberts 1997). The idea of maternal-fetal conflict gives the government a reason to restrict autonomy of the pregnant individual (Roberts 1997). Our culture tells us that a pregnant individual is supposed to let go of her own subjectivity, to be selfless and to care for her fetus. The essence of the pregnant woman is her biological, purely mechanical role in preserving the life of another her claims to subjectivitywill conflict with her life-support function (Bordo 1993). Divisions between Women For privilege to exist, there must be oppression for others. Oppression eliminates or reduces human dignity and the capacity to express oneself and participate in society as effectively as those who are more privileged (Feagin, et al 2015). Oppression has levels that vary for everyone based on gender, race, ethnicity, sexual orientation, and class (Feagin, et al 2015). One dominant and privileged group in a patriarchal society is males, although privilege will vary based on their other demographic characteristics. Dominant groups thrive on control, and there has been a male fascination with controlling the female womb (Rapp 1999). In the 1960s and 1970s control shifted for a short time from the male-dominated physician profession to privileged female individuals due to FDA approval of the birth control pill and legalized abortion in 1973 (Waggoner 2017). These important advances were not helpful for all females, as many females were not given the ability to choose due to circumstances involving their additional oppressions within the system. For example, some women of lower socioeconomic status were not able to afford contraceptives or abortions, and women of color, predominantly those who were on Medicaid, experienced reproductive control in the form of forced birth control, abortions, and sterilization (Taylor 2020). By the 1970s, sterilizations began to grow with 200,000 performed in 1970 to over 700,000 in 1980, and many of these were performed without informed consent on women of color with those on Medicaid tending to be targeted most aggressively (Roberts 1997). Due to the female gender not having a common history or an exact event that led to the subordination, there is a lack of commonality and solidarity among females (de Beauvoir 1949). White women tend to align themselves with white men before they would align with women of color and tend to tie themselves to their families and their husbands and less so to each other (Lorde 1979). As de Beauvoir states the tie that binds her to her oppressors is unlike any other. The ideology of patriarchy, which oppresses females and removes their ability to fully participate in society as successfully as their male counterparts causes the issues of aligning with males instead of other females (Feagin, et al 2015). Without the same opportunities, females are put in a role of survival, which often leaves them in a subordinate position unable to find true independence and thus, female solidarity. The issue of finding commonality does not explain the full extent of the trouble with the female genders solidarity. Racism and exclusion in the feminist movement are issues that continue today (Goodwin 2022). Diverse perspectives are not welcomed or supported and that has led to the failure of feminist movements within the United States (Lorde 1979, Luna 2020). Women of color, and in particular, black women, have a unique perspective and experience that continues to be overlooked much to the determinant of the movement (Luna 2020). This unique perspective is due to the intersection of predominantly race, class, and gender (Hill Collins 1990). White heterosexual feminists have followed a patriarchal, capitalist approach to the movement, which in turn has led to its demise, and females must recognize differences as the core strength of feminist movements (Lorde 1979). Control and Impacts on Maternal Health Maternal Mortality and Morbidity The United States is currently grappling with extremely high and growing maternal morbidity and mortality rates (Fielding-Singh & Dmowska 2022). Maternal morbidity is when pregnancy-related complications result in serious health issues for women (Taylor 2020). Maternal mortality rates are the number of maternal deaths per 100,000 live births (CDC 2023). Though maternal mortality has continued to decrease in other countries, that is not the case in the United States. The US has the highest rate of maternal mortality among high-income countries (Fielding-Singh, et al 2022). The rate continues to climb each year with 32.9 deaths per 100,000 live births in 2021 compared with a rate of 23.8 in 2020, and 20.1 in 2019 (CDC 2023). The increases from 2020 to 2021 were significant for women in all race categories (CDC 2023) although, there is a large disparity for women of color, predominantly black women. They experience a maternal mortality rate at roughly three times that of white women (Taylor 2020). For example, in 2021, non-Hispanic white women had a rate of 26.6 per 100,000 births, while black women had a rate of 69.9 per 100,000 births (CDC 2023). Defensive Medicine and Obstetric Gaslighting Taking away a womans right to choose if pregnancy is right for her body could increase pregnancy and childbirth complications. People who experience pregnancy and childbirth report a wide range of experiences and it is crucial to understand more about why people have negative outcomes and traumatic experiences. Its also important to try to understand what changes have occurred more recently that could be factors for our increasing maternal mortality rates (CDC 2023). The U.S. cesarean rate has increased dramatically from just over 5 percent in 1970 to 32.1 percent in 2021 (CDC 2023). The current c-section rate is more than double the maximum rate recommended by the World Health Organization of 15 percent (Morris 2013). The consolidation of healthcare systems and the increase in malpractice insurance premiums have led to this increase in c-sections, which doctors use as defensive medicine (Morris 2013). The csection allows maternity care providers to say they did everything they could to protect the baby and avoid malpractice claims (Morris 2013). In the Listening to Mothers study, black women were more likely to be given a c-section at a rate of over 40 percent, while white women were given one at a rate of 29 percent (Taylor 2020). The rates found in the Listening to Mothers study are mostly consistent with national rates which are 36.8 percent for black women and 31.0 percent for white women (CDC 2023). The rates for maternal mortality and morbidity are about three times higher for women who had a c-section versus vaginal delivery (Taylor 2020). The overuse of c-sections has been a concern for the medical and public health community for decades (Taylor 2020), but women are often told it is safer for the baby and encouraged to have a c-section, causing women to unknowingly increase the risk to their own lives (Morris 2013). Gaslighting is defined as a type of abuse aimed at making victims question their sanity as well as the legitimacy of their perspectives and feelings (Fielding-Singh, et al 2022). This can take form in the field of obstetrics due to stereotypes of women as irrational and emotional and medical professionals seen as rational experts (Fielding-Singh, et al 2022). Judgments of pregnant people and assumed expertise by others carry through into the pregnancy, delivery, and postpartum experience for women. A recent study using in-depth interviews between 2019 and 2020 found that between one-fourth to one-third of women who will give birth in their lifetime have reported the experience of birth as traumatic (Fielding-Singh, et al 2022). Gaslighting affects women of color more than white women due to the intersection of gender and race discrimination in the healthcare system (Pirtle & Wright 2021). As mentioned earlier, maternal mortality is decreasing globally but continues to increase in the United States and this is attributed to gaslighting in the medical field due to the medicalization of childbirth and the practice of defensive medicine by increasing c-sections (Fielding-Singh, et al 2022). Doctors are listening more to monitors than to the actual patient and doing whatever will be the least risky to the hospital and themselves versus the short- and long-term risk to the mother (Fielding-Singh, et al 2021). Healthcare Technology and Fetus as Person Technology Aides Personhood Technology has changed the way we can view a fetus, with advances such as ultrasounds. When technological advances were introduced in the late twentieth century, they were seen by feminists as a power play by the male-dominated obstetrician field, but also as a positive to give women more insight into the fetus growing in their bodies and the ability to make decisions based on that knowledge (Rapp 1999). When ultrasounds became common in the late 1970s in the United States, issues arose due to ultrasound technology dissolving a females bodily boundaries and making the fetus an independent autonomous agent (Mitchell & Georges 1998). Sonograms, which are the images produced by ultrasounds, continue to advance, and give images of younger and tinier fetuses in clearer depictions (Mitchell, et al 1998). The popularity and experience of ultrasounds and sonograms have led the way to perceive a fetus as a baby. Ultrasounds are so powerful in connecting personhood to a fetus that lawmakers legislate mandatory viewing before having an abortion (Mitchell, et al 1998). Describing something with action words is central to giving something the status of personhood in our culture (Martin 1991). When an egg and sperm are described as living beings with action words, it lays the foundation for the argument of life at the moment of fertilization (Martin 1991). Giving cells personalities describes them as people and can have and has had dire consequences (Martin 1991). Giving sperm and egg human characteristics translates into giving an embryo and fetus the characteristics of a child. During ultrasounds, fetal movements are labeled by the sonographer as actions like dancing or playing and personalities are given such as shy or cooperative, and the parents are discouraged from saying fetus and encouraged to refer to the fetus as baby (Mitchell, et al 1998). Oddly, though the woman during an ultrasound is the actor for the device, the fetus becomes the actor, and the sonographer becomes the expert on what is happening to the womans body (Mitchell, et al 1998). Fetal Personhood Recently, abortion and fetal personhood laws are being proposed across the country. For example, a new law in Arizona that was argued by the ACLU in 2022 stated that an unborn fetus has all the same rights, privileges, and immunities as all persons, and Georgia recently passed a law stating a fetus can be claimed as a dependent on tax forms (Time 2022). In terms of abortion regulation, there is recent conflicting federal rulings on the invalidation of the FDA approved abortion medication, Mifepristone in Texas and Washington (Valenti 2023). The new Texas abortion law, SB8, is an antiabortion law that bans abortion after six weeks of pregnancy with no exceptions for rape or incest and allows citizens to monitor and seek civil damages against anyone who aids or abets a person seeking an abortion (Goodwin 2022). To better understand what six weeks of pregnancy means, consider a typical menstrual cycle. The cycle is typically every 28 days meaning that if a woman does not realize they are pregnant until a missed cycle, the realization could occur around week five of the pregnancy (Clevelandclinic.org 2023). By the time they make a doctors appointment to confirm the pregnancy and an appointment for an abortion if that is their choice, they will likely be beyond week six of the pregnancy and thus will no longer be able to make that decision for their body according to this law. This law takes away the agency and liberty of vulnerable people and has similarities to American slavery in terms of handing the law over to citizens (Goodwin 2022). With the protection of potential life and the Supreme Court agreeing that a womb is subject to state regulation, female bodies do not have the same rights as male bodies (Goodwin 2022). Criminalizing pregnant women is nothing new for women of color, but fetal personhood is finally getting attention from white feminists as these laws begin to take shape. The control of the reproduction of black women shifted to making reproduction a crime in the 1980s during the Reagan Administration (Roberts 1997). Those on Medicaid were targeted and drug abuse, predominantly crack use, was used as the focus which specifically targeted women of color (Roberts 1997). Unfortunately, criminalizing pregnant women was not seen as a problem in the mainstream feminist movement when it only impacted women of color (Luna 2020). Because abortion was the dominant focus for the white, middle- and upper-class feminists, a serious issue was ignored and overlooked: the prosecution of pregnant women (Goodwin 2022). The early fetal personhood rulings were mostly seen as a race issue, and that is one of the biggest mistakes of the feminist movement that we are now living with the consequences of today (Goodwin 2022). Theoretical Framework The theory that relates most specifically to this research is contemporary feminist theory. Contemporary feminist theory assesses the situations and experiences of women in patriarchal societies and seeks to see women as the central subjects to the research (Feagin, et al 2015). Within contemporary feminist theory, I am drawing on Standpoint theory from Dorothy Smith (1979) which is research done from the standpoint of women and moves away from object to subject status to focus on lived experiences and the diversity of those experiences (cited in Feagin et al 2015). In addition, specifically within feminist theory, women as other (de Beauvoir 1949; Bordo 1993), control of womens bodies, specifically reproductive bodies, and the controlling descriptions and images within our culture (Almeling 2020; Martin 1991; Roberts 1997) are used in this research. Lastly, the theory of Intersectionality from Kimberl Crenshaw (1991) is used that points to a complex intersection that subordinated people live within that includes racism, sexism, and classism and points to the need for feminist thought to be more nuanced and inclusive (Hill Collins 1990). Method Study Design The research study used a cross-sectional survey. The survey used a nonprobability sampling method beginning with a convenience sample and followed with a river sampling method by recruiting individuals across the country via different methods discussed below. The online survey aimed to understand various individual perspectives on fetal personhood and how a females individual rights and bodily autonomy are viewed before, during, and after a pregnancy. The research was interested in understanding opinions and how they change over time, and how they differ by a variety of demographic data points such as geographical location, age, gender identity, religious background, race, ethnicity, education, political views, and socioeconomic status (SES). I collected quantitative data within this survey, but for this research I focused on the qualitative data. Qualitative analysis was conducted from the survey responses from demographic, close-ended, and open-ended questions. Participants The participants were of any gender identity aged over eighteen living within the United States. The reason the sample was so inclusive is that I wanted to include individuals from every background with various beliefs to try to get a deeper understanding for the overall feelings and opinions on this topic within the country. The research goal was to include all states within my target population to make sure I captured various regional views and to ensure I gained enough participation in the survey. The only exclusion is those under eighteen years of age due to the nature of the topic. Individuals were recruited for the survey using a convenience sample by sending out emails to my and the sociology facultys personal and professional networks asking for participation. A social media post also went out through the UIndy Sociology account, my personal accounts, and my thesis advisors accounts. I hoped to gain participation from at least 250 respondents, but ideally, I aimed for 500 respondents across the country. After recruiting this way, I determined paid promotion was necessary to increase participation and expand reach using a river sampling method through paid ads on Facebook and Instagram targeting anyone living in the United States over eighteen years of age. After running these ads for a few weeks, I ended up with a total of 1,149 responses. Materials/Measures Data for this study was collected via an online survey developed in Qualtrics. The survey questionnaire was developed based on questions that arose from the literature review and recent topics within our society and political climate. The questions were reviewed and revised with the help from thesis advisor, Elizabeth Ziff, PhD, University of Indianapolis; Sociology faculty members including Amanda Miller, PhD and Colleen Wynn, PhD; and current graduate students in the Applied Sociology program. The survey contained multiple choice, Likert scale questions, open-ended questions, and demographic questions. A hyperlink to the survey was distributed to adults in the United States via email and through social media (Facebook, Instagram, Twitter, and LinkedIn). The survey was constructed to understand participants opinions and knowledge of fetal personhood, female bodily autonomy, and infant and maternal mortality. The survey contained a total of 40 questions with predominantly close-ended and open-ended questions ending with demographic questions (Appendix A). Questions were developed based on information found throughout the literature and are rooted in the research covering the broad topics of intersectionality, patriarchy, and changes in healthcare systems. Data Analysis The purpose of this study was to describe the opinions of adults across the United States in terms of fetal personhood and female personhood. Data was analyzed in Qualtrics and Dedoose. Regarding the qualitative responses, I performed an inductive analysis and used the four-stage Grounded Theory: code, concept, category, and theme (Bernard & Ryan 2010) approach. This methodology requires multiple rounds of coding, which identify and connect different themes within qualitative data. Both open coding and axial coding were used to analyze the open-ended responses. Open coding helped identify patterns within the survey respondents, while axial coding drew connections between them. I met with my thesis advisor on a regular basis to review trends and codes, identify a common code deck, identify themes, and identify areas for more exploration. Descriptive statistics to describe responses to the closed-ended demographic questions were conducted utilizing Qualtrics. Results As mentioned, this survey used a nonprobability sample and is not generalizable to the entire population of the United States. This research is exploratory to understand opinions within the actual sample achieved using these methods rather than to generalize these opinions to the greater population. This sample skews female, white/Caucasian, and highly educated (Appendix B). There was however a wide range of ages and geographic locations represented in this survey. The age of respondents ranged from 18 to 88 years old with the largest number of respondents in the age range of 36 to 38 years old. Besides Alaska and Rhode Island, all states had at least one respondent. Respondents overwhelmingly provided rich details and, in some cases, lengthy responses to open-ended questions, which are explored below. The idea of complexity in terms of human reproduction and fetal personhood is nothing new or groundbreaking. These topics are a point of contention in many cultures and have been so in the United States since its formation. This research offers data that point to a different complexity, that of the individual. The data show there are social and human components to these issues that are far more nuanced than what a chosen side on the topics can define. To examine the nuance, the open-ended responses to the following five questions were reviewed: Do you view birth control as a form of abortion?; If you do think there are low birth rates in the US, what do you think is the cause?; When do you believe a fetus becomes a living human being?; Do you believe an unborn fetus is entitled to the same rights as the person carrying the fetus inside their body? Why or why not?; and Throughout your lifetime, have your opinions on reproductive choices changed, and if so, why?. The following themes were found that show complexity where we may not always look for it, by how humans describe and make sense of definitions, labels, and their unique lived experiences regarding fetal and female personhood. The results show the challenge of defining broadly used terms and the issues with using labels to form assumptions. Most importantly the results align with feminist theory in terms of amplifying lived experiences and the unique perspectives from the distinct standpoint of those who have experienced pregnancy, childbirth, or both. Definitions Birth Control and Viability The subjective nature of definitions in human reproduction adds to the complexity of defining terms or describing reasoning or outcomes. For example, when survey respondents were asked if they considered birth control a form of abortion, 23 individuals chose not to answer the multiple-choice question as yes or no, but rather the choice of other with an explanation of a gray area where they view some types of birth control as abortion while other types are not. The primary reasoning is that some are abortifacients and impact a fertilized egg. Respondent 328, a female who works in healthcare stated, If it prevents conception, no. If it causes the uterine lining to shed an implanted fertilized egg, yes. While respondent 632, a female stay-at-home mom (SAHM) from Wisconsin noted, It could potentially prevent a fertilized egg from implanting, which means it dies, so I cant bring myself to use it, but I don't consider it abortion. This respondent shows the conflict between their personal feelings along with their overall belief, something commonly found throughout this analysis. Viability was extremely difficult for some to define due to a newer gray area caused by advances in neonatal intensive care units (NICUs). For example, respondents were asked when they believe a fetus becomes a living human being and could choose all that apply from multiple options. Based on responses most respondents overall are close to an even split between viability and at birth with 44% and 38% respectively (Appendix C). Seventy-four individuals chose other and provided additional details as to why. For example, respondent 407, a female from Ohio working in biomedical research, chose the options of when it is viable, at birth, and other and noted the difficulty in the definition. Defining viability is tricky because it is now possible for fetuses to survive outside of a human uterus earlier - ultimately I think regardless of my understanding of fetal personhood, a decision about terminating a pregnancy should be between the pregnant person and their doctor. Respondent 30, a female in management consulting from Indiana had a similar difficulty in defining viability. Viability is complicated and when a child could survive will depend on the level of access to healthcare available in their area. I'm not sure if I know a specific week of pregnancy where a cutoff should be. Both respondents note the difficult nature of defining viability due to healthcare access and advances, and the difficulty defining a cutoff or making that decision for someone else. Other respondents note the need for clarity in terms of defining viable and further medical care needs, such as respondent 252, a female geologist from Texas: Viable is an ambiguous term. With medical advancements, yes, a 23-week fetus *could* survive with extensive round-the-clock care for months. I feel viable should refer to being able to live without medical props. A 1-year-old still hooked up to machines with physical and cognitive issues isnt a miracle. Its a shame. Respondent 74, a female teaching assistant from Missouri noted, Viability is a gray area. When I think of viability, I mean that the fetus can survive without medical intervention. This respondent along with others consider how to define viability in terms of the need for further medical treatment and care and the difficulty with defining the difference within the broad terminology of viable that is consistently used in our dialogue. Opportunity for Women - varied interpretations When respondents were asked if they believe that we have an issue with low birth rates in the United States, of those who agreed that we do, they were asked what they think the cause of the low birth rates are. Interestingly, many cite womens opportunities with their careers, educational attainment, and individualism as the cause, but some see womens opportunities as positive, while others see these same opportunities as a negative. For example, respondent 507, a female from South Dakota not currently working, states, All women are called to be mothers, and notes that Birth control, female empowerment, and large PR campaigns that assure women that their careers are the secret to a happy, successful, meaningful life as the cause for lower birth rates. Similarly, respondent 281, a female homemaker from California, notes a career as an issue but also the loss of marriage and morals. Out of wedlock public financed abortions. Progressive values instead of biblical values thus moral decline in society, no family values, thus no marriage, career-oriented seeing no need for children. Both respondents have a common view that low birth rates are caused by people (and, as one implied, women in particular) seeing their career as a fulfilling component to their lives instead of children. Stating womens opportunities but from a positive perspective, respondent 790, a female from Wisconsin in the field of education explains and provides an idea for how to improve population growth without enforcing childbearing: Women are more educated now and they can choose when to have children and how many. Raising children costs too much money. There is no longer a need to have a lot of children if a woman doesnt want to. Women should be able to be all they can aspire to be. Being forced to have children takes away from those opportunities. We should increase immigration, which will take care of population demographic issues. Interestingly those who note the positives of additional opportunities for women, also note other factors that could impact birth rates in the US such as marriage later in life, fertility issues, personal influences, or the state of our global economy. For example, respondent 915, a female from Illinois in the software industry explained: I believe the American family is no longer what it was 20+ years ago. With greater access to information, women have a better understanding of the sacrifice and cost involved in raising a child and may choose to focus on their careers or travel the world instead. Additionally, women may not want to have a child due to the direction the world is heading. Fertility issues may also play a role. Furthermore, people are getting married later in life and therefore, starting families later than in years past and having fewer children. Personal influences (family/friends suggesting not to have children, terrible childhood, etc.) may also play a role. What some respondents define as a moral decline in society and false PR campaigns, others define as the access women now have to more accurate information, education, and career advancement. The opposite opinions display our divisions in describing the change in our society and the complexity of defining how opportunities for women impact birth rates in our country. Varied reasons for Female Personhood Rights Overall, most respondents of this survey believe the female body is entitled to the right of personhood over the fetus having the same or any rights. However, when giving reasoning for female personhood, the answers vary considerably. When asked if they believe an unborn fetus is entitled to the same rights as the person carrying the fetus, respondents gave various reasons as to why not, including bodily autonomy and informed consent, constitutional rights, and that the pregnant person already has a life, feelings, and connections with other living beings. For example, respondent 1042, a female SAHM from Oregon stated, The fetus cannot survive without the mother. The fetus doesnt have a life or feelings. A living, breathing woman has a life, feelings, needs, people that may depend on her, etc. Similarly, respondent 633, a female elementary school teacher from Vermont notes a personal story of a friend who had a difficult pregnancy: A woman carrying a baby has a huge network of people that love and need her. If the fetus had the same rights as the woman, then her life could be at risk which could negatively impact the people who depend on her. One of my friends had a lifethreatening pregnancy with three young children and a husband already at home. Luckily, both her and the baby survived but if the baby had the same rights as her before birth and things went wrong, her family would have been devastated and the quality of life for her previous children would have decreased significantly. Both respondents used the reasoning of the pregnant woman already having a life with ties to others and potentially family and other children who are attached to her. Many use the case for informed consent and bodily autonomy as their reasoning, such as respondent 877, a female student from Texas, stating: No other human is given the right to use another humans body without their consent, so a fetus should not be given rights that are given to no one else. We do not even allow organs to be donated from dead people who are no longer using them to save lives if we do not have consent, so why should using a pregnant person's body be any different. Respondent 556, a female from Indiana also expands on the contradictions in informed consent in terms of a pregnant body: We already dont give people the same rights when they are underage. Does a fetus mooching off the body of the pregnant person even have a right to do so? Does the concept of bodily autonomy extend to a right to use other peoples bodies for your own survival? If I cant force someone to give me one of their kidneys so I can live, then a fetus cant force a pregnant person to give their bodies. Maybe we should also be asking if a fetus should be charged with manslaughter if the person who births them dies in the process. If a fetus has the same rights as a grown person, then should they not bear similar responsibility? And respondent 984, a female attorney from Kansas notes the importance of bodily autonomy. No. Whether or not a fetus is a life is irrelevant. No person can be compelled to use their body to benefit another without their consent. The right of the mother to bodily autonomy must take precedence. These respondents point to the inconsistencies found in informed consent for human bodies and when bodily autonomy is applied and taken away. The last main argument focused on U.S. constitutional rights and what is and is not afforded to a fetus and a pregnant individual. Respondent 999, a female in the military from Texas, states: No. They are not legal citizens, because they haven't been born yet. They don't have a social security number and their life starts at the first breath. Simply put, a parent can't take out a life insurance policy on an unborn fetus. A parent can't ask the other parent for child support because they are not a baby. There's literally nothing offered on the table to parents legally to cover them if something should happen to a wanted baby. Simply because a fetus isn't a baby. And respondent 15, a female from Georgia noted: No, constitutional rights are given to those who are explicitly born, if we prioritize fetal rights this diminishes the autonomy of the pregnant person rendering them a vessel for reproduction and placing the pregnant person at risk of increased surveillance and reduced overall rights. The respondents point to legal rights at birth and the inconsistencies with our country viewing a fetus as a baby but also not as a living baby in terms of available benefits and identification as a citizen of the U.S. Labels Demographics and Labels Do Not Determine Views As a country, we use and rely on demographic labels, and we tend to believe a label can tell you a lot about a person without ever having an actual dialogue. This survey gave people a chance to communicate their personal beliefs and share demographic information in a private online setting. The demographic information that is used as labels in our society combined with the detailed responses shared indicate that labels and the assumptions that go along with them can be inaccurate and misleading. Respondent 166, a female from suburban Indiana working in healthcare who identified as a Republican, conservative, and Christian stated their belief in female bodily autonomy and the right to choose. Until the baby is born, it should not have rights that could harm the mother. The mother should have the right to have complete control and governance of her own body Politically/religiously I used to disagree with abortion. But after I opened my eyes to the real world- how cruel it can be to women, and worked in healthcare with various socioeconomic classes, it became clear that women deserve the right to choose. I personally will forever choose life because that is my fundamental belief, but I think its imperative every woman gets to choose for herself and not allow laws/government to choose for them. Respondent 112, a female from suburban Pennsylvania working as an engineer who identified as an Independent, liberal, and a Catholic, believes a fetus is a person, stating: Yes. They are human. A doctor should work to prioritize the health of everyone involved in the pregnancy. Sometimes that is not possible. Ending a pregnancy by abortion should not be an answer, because it ends the life of the child. While some other medical procedures result in an abortion, that is not the intent of the procedure. All procedures should always be with the intent of keeping the pregnant person and child alive and healthy. Respondent 835, a female from suburban Nevada working in education who identified as an Independent, both conservative and liberal, and a Catholic does not believe a fetus has rights and that women should have the right to choose. No. People have rights once born I was once pro-life and then I experienced pregnancy and motherhood. I now believe that women should have full bodily autonomy regardless of their circumstances. Children are wonderful but they shouldnt be forced on anyone. We should have unregulated access to birth control, including sterilization, and abortion. We could also support families wanting to have children by reducing the cost of healthcare and offering more programs for children of any socioeconomic status. The middle class is often forgotten when pushing through support for children and I see countless middle-class families struggling with appropriate care. These examples show Catholics can be pro-choice, liberals can be pro-life, and those who identify as Republican, Christian, and conservative can still believe in womens bodily autonomy and the right to choose. Inaccurate assumptions may seem obvious to some who know people are complex, but in mainstream dialogue and the media, labels are historically and still today used to oversimplify a persons complex beliefs in simplistic binaries. As exhibited here, that is simply not accurate. A persons complexity also relates to the theoretical framework of contemporary feminist theory and intersectionality that point to the argument that you cannot assume uniformity with identity and the focus must be on diversity of lived experience. Pro-life stance of Equal Rights label vs Fetal Rights label Of those who responded to this survey and believe that a fetus is entitled to the same rights as the person carrying the fetus, many did not want to label their opinion of fetal rights as fetal personhood or state that a fetuss rights outweigh the females rights. When asked if an unborn fetus is entitled to the same rights as the person carrying the fetus, respondent 983, a female from suburban Virginia states, Both the woman carrying her child and the child have inherent dignity and both are worthy of life. Respondent 871 a male from Tennessee who retired from the military states Yes...they are that person, essentially. Respondent 587, a female from Texas working in healthcare, states Yes. Both are separate genetically unique individual humans that both have inherent rights and dignity by virtue of being human persons. Respondent 1029, a male from Massachusetts working in education shows clearly dislike for the term fetus stating The value of each life is equal. Why do you refer to the child as an unborn fetus? Is there such a thing in your mind as a born fetus? It is clear there is some discomfort with using the term fetus when describing any rights and typically is replaced by child or baby. A few use the term dignity to describe a right to life for the fetus. These respondents reason that the pregnant person and the fetus each have equal rights while sharing one body and each deserve to live. Embracing a change of opinion, but avoiding labels When it comes to stating how opinions have changed throughout the course of their lives, respondents predominately stated whether they became or always had been pro-choice or became or always had been pro-life. There were however respondents who indicated a change but did not state either side or choose a label when responding to this question. There was a trend found in those who note a change in opinion regarding having children of their own with a total of 41 respondents. Sixteen of the respondents note a change in opinion of having children along with becoming more pro-choice or that they have always been pro-choice, while the other 25 do not note the change in opinion as a factor of choosing a side or label but simply state their views on having children as the reason their opinions have changed. For example, respondent 659, a female attorney from Utah, states, Yes. My personal decisions on having kids has changed as I got older and was able to ignore societal pressure saying I had to have kids because Im a woman. Respondent 261, a female from Florida states Its ok to not want children when in a society that emphasizes having them after being married. Everyone has the right to choose the family (with or without kids) thats right for them. And respondent 498, a female from Washington working in adult education touched on multiple experiences in their life along with the cultural messaging issues: Girls in my high school got publicly humiliated and sent away for being pregnant. It radicalized me for life. (I was not a teen mother). I favor vigorous promotion and use of birth control, abortion, and voluntary sterilization for both genders. I feel that infancy and childhood are idealized in much the same way that marriage and weddings are. The costs of a baby to the environment, society, and the development of women are carefully shadowed by a romanticized view couched in religiosity. Predominant themes for change in opinion on having children include becoming aware of the societal pressures and cultural messaging towards women and making decisions based on their personal judgments instead. One respondent recalls a memory from her childhood and how witnessing the mistreatment of girls in her school changed her views forever. The respondents recollection connects with the final theme found and explored below, lived experiences. Lived Experience Personal choice vs choosing for others When responding to how opinions have changed throughout their lives, a total of 34 respondents note the realization that their personal opinions should not control the available decisions for anyone else. For example, respondent 652, a female from California, states: Yes, when I was very young I was a rabid anti-abortionist. I felt there was never any reason for an abortion, part of that was influenced by a girl I knew who only used abortion as her birth control. When I got older and started learning more and learning about all different types of pregnancies and life situations, I came to understand that for some people abortion could be the answer they need. I don't have to like abortion, I'm never going to like it, but I learned that I have no right to force my feelings on another person no matter who that person is. Respondent 605, a female in recruiting from Indiana, noted: Yes, if I had been impregnated as a teenager I likely would have considered abortion because I wouldnt have been ready to carry a fetus or be a parent. Now in my 30s, I likely wouldnt abort unless my doctor thought it necessary. But I would never try to deny someone else their bodily autonomy. And respondent 452, a female in consulting from rural Washington, states, No, I have my own beliefs about what is morally right for me but do not think I can make those choices for anyone else. Freedom of choice is the bedrock of our constitutional freedoms. These responses show empathy and openness for others to form their own beliefs and decisions as well as a transformation to get to this point for some. Family trauma One of the ways to listen and understand best is to hear from people with lived experience. Several respondents noted a personal, friend, or family member trauma in response to asking if their opinions had changed throughout their life. Respondents were asked if their opinions on any reproductive choices changed throughout their life. Respondent 253, a nonbinary individual from Minnesota working in early childhood education noted their views based on their mothers experience as a teenage mother. No. My mother was 16 when she got pregnant with me, and in my opinion it ruined her life. Respondent 871, a male retired from the military from Tennessee stated, Yes. We lost our daughter when she was born prematurely because we are a mixed-race couple and lower in social status at the time. Respondent 323, a female in health communication from Washington recalled a past family trauma: No. I was a young adult when Roe was enacted, and I saw the tragic results of state interference with a basic human right. I never got to know my dads older sister, who died of a self-induced abortion before I was born. Respondent 771, a female from New Hampshire, experienced incest and rape and had to obtain an illegal abortion as a child. No. I was raped repeatedly by my father & impregnated at 13. Without a (not legal at the time) abortion, I would have committed suicide. And respondent 576, a non-binary and transmasculine individual from Montana shared the following experience growing up and how the fear of pregnancy caused mental and physical health issues: As a very young child, I thought that if someone was pregnant and didnt want a baby, the answer was adoption. When I was 12, there was no event that could have caused pregnancy, but I decided that if I were ever raped and got pregnant, I would starve myself so I wouldnt have the baby. As a non-binary child with anorexia, the idea of pregnancy was utterly terrifying. It still is; Im so grateful for my hysterectomy that makes it completely impossibleLooking back, this child was so terrified of the idea of pregnancy that they had a plan to hurt themself to stop it. They had that plan for their own peace of mind without ever even having sex or being in a position where they could get pregnant. Abortion needs to be legal and openly available, not just for those who need it, but for those who need to know that they could get medical help without having to hurt themself. These examples are only a sampling of the deeply emotional stories shared by respondents and shows how policy, law, and access to reproductive care can affect not just the immediate individual involved but also generations to follow. It also shows how bodily autonomy and mental health are interconnected for human beings. Empathy by experience Lastly are those who have experienced exactly what is being heavily debated: pregnancy, childbirth, or both. Over 20% of respondents who noted they had become more pro-choice pointed to experiencing pregnancy and childbirth as the reason why. For example, respondent 39, a female in nonprofit management from Indiana, stated: Yes. I was strongly anti-abortion as a young person, but my views began to moderate during and after college. Ultimately, becoming pregnant and giving birth convinced me that no woman should ever be forced to experience that against her will. Respondent 1005, a SAHM female from Utah, noted: Yes, I used to be very anti-abortion until I had my own children and realized pregnancy and the complications, fears, limitations, and consequences should not be a punishment, but an active choice - its already so hard when the pregnancies are wanted and loved and eagerly awaited. These respondents tend to focus on their newfound empathy for other people who could become pregnant along with the difficulty of pregnancy and childbirth even when it is a wanted and anticipated pregnancy. Some respondents focused on the importance of their children to them, such as respondent 611, a female in education from Kentucky who became more pro-life after having children, who noted, Yes. I used to be more pro-choice. But now Im a mother of two and am more pro-life. Respondent 23, a non-binary professor from Texas noted: Yes. I spent a lot of time adamantly pro-choice with little appreciation for the sanctity of creating new life. However, I recently had a baby and, while my views on abortion havent changed at all, my understanding of how sacred the creation of life is has been greatly expanded. Though this respondent did not become more pro-life, they did explain the experience of having a child expanded their views on the sanctity of life. Lastly, there was a respondent who connected the change in opinion to not just experiencing having children but also to the fact that she has a daughter that could be affected by these newly created laws. Respondent 153, a female dental hygienist from Indiana, stated: Yes. As a young adult, I believed birth control should be limited and abortion was always wrong. I have 4 children, and being pregnant and being a mom are not easy things. I no longer believe anyone should have those choices made for them. It is very important to me that my daughter be allowed to make her own choices. For those who focus on their children in their responses, the responses predominantly still show empathy for others who could become pregnant and need the ability to make their own choices for their bodies, be it a stranger or a daughter. Open to listening, but not changing When asked if their opinions have changed throughout their life some respondents acknowledged that these topics are complex. For example, respondent 234, a female from Hawaii, stated, I realize its all more complicated than I realized and that the variety of opinion is greater than I understood. Respondent 966, a female from Indiana working as a school psychologist, stated, Yes. They have broadened. It is much clearer that most issues arent black and white. And respondent 235, a male student from Illinois, notes: My opinions on abortion have not really changed, but I see a connection of choice and pregnancy-related to health care services. To alleviate the difficult decision-making on abortions, I argue for the maximum of reproductive care (such as birth control) to prevent tough abortion choices. I consider sexual health a human right. I have come to better respect other opinions on reproduction as the beliefs around a fetus' personhood are moral, religious, metaphysical, and ultimately not something science can prove or disprove. These respondents note the complexity of the topic of human reproduction and the openness to hearing other opinions. Receptiveness to other opinions as well as thoughts on opinions changing over time was asked of all respondents. The respondents to this survey noted being mostly open to hearing other viewpoints (Appendix D) but they were adamant about their formed opinions and that they will likely not be changing them much if at all (Appendix E). Only 3.6% of respondents stated they are never open to hearing other viewpoints, while the majority at 79% of respondents are typically open, stating they are either sometimes, usually, or always open to hearing other views. In terms of their opinions on any reproductive topics covered in the survey changing in the future, 69% of respondents stated they either somewhat disagree or strongly disagree that this is likely, and a few noted some openness to this potentially happening with 29% stating neither agree nor disagree, or somewhat agree. Only 1.5% of respondents strongly agree that they could change their opinions in the future. These responses show many respondents are open to hearing other opinions but are mostly confident in their opinions and do not see their opinions changing in the future. Discussion The results of this qualitative analysis point to a few key findings. First, definitions and labels used in mainstream society and media are not as clear as one may be led to believe. There are gray areas that many respondents point to, and when it comes to topics of human reproduction, ones personal views on reproductive choices for themselves can be the opposite of their thoughts on reproductive choices for everyone else. The theme of forming empathy for those who could become pregnant by those who have experienced pregnancy was consistent in this research, and the respondents personal descriptions of that unique experience point back to the literature in several ways explored below. Defining fetal personhood In exploring the complexity of definitions, many respondents explained that some kinds of birth control are abortifacients in their opinion, while others are not. As the literature tells us, due to living in a patriarchal structure, views on reproduction take a patriarchal perspective. One way this can take shape is through the cultural imagery of an alive and active sperm influencing the individual to view a fertilized egg as a life demonstrated in Martin (1991). Some of the respondents noted certain kinds of birth control that shed a fertilized egg are abortifacients in their opinion. The view of life beginning at fertilization has become a more vocal and supported view by those in powerful government positions who are creating our laws, such as the House Life at Conception Act proposed in 2021. Along with action words for sperm, as Mitchell & Georges (1998) describe, fertilization is only the beginning of the use of action words that are ultimately utilized to refer to a fetus. Due to technology advances with sonograms and ultrasounds, a fetus is viewed as a baby and described as a child within our culture. The view of fetus as person is clearly depicted by the respondents who note a fetus has an equal right to life and the discomfort in using the term fetus and replacing it with the word baby or child in their responses. There was also a common theme from these responses of the pregnant person and fetus having equal rights and the use of the term inherent dignity for both. The concept of dignity in this debate is often culturally coded. Dignity is used in the literature to describe oppression, and thus there is an interesting and one could argue trained response to counter the equal rights question. As Feagin et al. (2015) explains, oppression eliminates or reduces human dignity and the capacity to express oneself and participate in society. When respondents describe that both the mother and child have equal rights, some refer to them as separate but equal, while others refer to them as one person sharing one body. These two arguments align with the woman as other theory from de Beauvoir (1949) and from Bordo (1993) that a woman's body is not seen as autonomous and the difference in legal application of informed consent. As Bordo (1993) points out, the cultural imagery that women are to be selfless and should preserve the life of another is a message in our society and mainstream media that continues to be prevalent today. The selfless cultural imagery also aligns with Valentis (2010) findings in a patriarchal society of female bodies as valued and judged based on their morality, sexuality, and virginity, all adding to the complexity of how a pregnant body is judged and viewed based on those attributes by outside perspectives. Defining female personhood When it comes to defining why pregnant bodies deserve personhood, the various responses in the research point to a few different reasons. Many gave the reasoning of informed consent and bodily autonomy, reasoning that has been heavily explored and communicated in past literature such as Bordos (1993) analysis of informed consent differences by body and Thomsons (1971) violinist example argument that argues a right to life does not translate to an obligation from another for the use of their body. The second argument reasoned that a fetus does not have the same constitutional rights as a pregnant woman. This argument points to the issues with lack of diverse perspectives in the feminist movement. As Goodwin (2022) explains, recent fetal personhood rights laws have been passed and are being proposed in states across the country. Fetal personhood laws are a relatively new issue facing white women, but the criminalization of pregnant women has been common among women of color for decades (Roberts 1997). The feminist movement was largely from a white womans perspective and thus this issue was mostly ignored as a race issue, and the movement focused more so on abortion rights. As Luna (2020) and Goodwin (2022) point out, feminists missed the opportunity to be proactive and address the criminalization of pregnant women when this first came up and now fetal personhood legislation is starting to be addressed reactively instead. As many of my respondents allude to, fetal personhood laws are still not fully understood as an impending crisis for many who have been shielded by privilege from these laws up to this point. The last argument noted women already having a formed life with lived experiences and connections to other humans. This argument aligns with contemporary feminist theory and the perspective of seeing women as subjects instead of objects with lives and distinct points of view. The impact of lived experiences As the results show, to use a label as an assumption for someones views on human reproduction topics, is to miss the nuance and intersectionality of diverse experiences. Respondents had varying views on female personhood, female opportunities and life choices, fetal personhood, and abortion to name a few. Their demographic characteristics were not always an indicator for their views, and many respondents who held a personal view for themselves decided that view should not be held as a restriction for others. Many respondents noted changing their opinions to be more pro-choice after experiencing pregnancy and/or childbirth for themselves. Some went into detail as to why their views changed, while others simply stated that fact. Many stated that after experiencing pregnancy, childbirth, or both, they could not, and they do not believe others should be able to mandate a pregnancy or birth to anyone else. Respondents noted complications, fears, limitations, and consequences of being pregnant with a planned and wanted child and described the experience of giving birth as traumatic or as torture to force someone to do against their will. The research shows there is a voiced need for bodily autonomy that only those who have experienced growing a fetus inside their body or experienced the increasingly risky procedure of childbirth can fully understand or explain based on this unique lived experience. From the literature we know the factual data from the CDC (2023) on our country's growing maternal mortality and morbidity rates, which affect women of color and predominantly black women at three times the rate of white women. Second, the issues with defensive medicine and as Morris (2013) found, the growing number of cesarean sections that put women at a higher risk of complications. Finally, as Fielding-Singh and Dmowska (2021) point to, the gaslighting of women and predominantly women of color in the healthcare system and issues of health care workers not listening to womens concerns during pregnancy and childbirth. All these issues combined can create a traumatic, complicated, fearful experience that the respondents address. Limitations and Future Research This study does have several limitations. Due to the convenience sampling a predominately white, female, liberal, highly educated audience from the Midwest was reached. Along with the convenience sample limitations, river sampling (Lehdonvirta, Oksanen, Rsnen, & Blank 2020) that utilizes Metas algorithms, was likely biased in terms of a high percentage of the sample showing either an interest in the topic of reproduction or a connection to higher education in some way. Although common themes were found, further research should be conducted including more diversity in gender identity, ethnic and racial identity, educational levels, SES, and political affiliation. Due to the fairly homogenous nature of the sample the respondents lacked diversity such as racial diversity and thus further issues to examine within this topic such as intersectionality and structural racism in reproductive care were not explored. With a more diverse sample, I believe my participants would have had more personal experiences with traumatic births, an increase in family or friend experience with maternal and infant mortality, and additional opinions on reproductive justice with the need for full reproductive rights including not only the right to choose not to have a child, but also the right to have a child safely and raise a child in a healthy and safe environment (Luna 2020). Still, this research does show the importance of gathering qualitative research in combination with quantitative research due to the intricate complexities that each individual encompasses when it comes to this topic. Although this research shows comfort levels with sharing deeply personal experiences, this was an online, completely anonymous survey and shows people may feel most comfortable sharing in this setting regarding these topics. Moving forward, the quantitative, generalizable research on these topics ideally will also include open-ended questions in their surveys to gain this deeper insight and, if respondents are comfortable and open to sharing inperson, follow-up interviews for further understanding. This research shows that our patriarchal society does inform our definitions and opinions, but that lived experiences can add complexity and diversity that can alter how individuals use and understand definitions and labels. As a society we tend to default to a quick and easy label while missing the opportunity to find out how nuanced the conversation really is. The research aligns with intersectionality and contemporary feminist theory including Standpoint theory in showing the need for qualitative components in research on these topics to see each individual's point of view and gain deeper understanding. The need for in-depth research is nothing new in regard to the already well-known need for mixed-methods and qualitative research. Rather it is another example for why exploring these topics with the intent for encouraging respondents to expand and provide open-ended responses can add to our understanding of how complex and unique fetal and female personhood can be. The key takeaway from this research is that without lived experience we are left guessing and using our own perspectives to make assumptions. Instead, we should give those who have experienced what is being debated a voice. We must listen, try to understand, and value lived experiences as truths. References Almeling, Rene. 2020. GUYnecology: The Missing Science of Mens Reproductive Health. Oakland: University of California Press. Bernard, H. Russell, and Gery W. Ryan. 2010. Analyzing Qualitative Data: Systematic Approaches. Thousand Oaks, CA: Sage Publications, Inc. Bordo, Susan. 1993. Unbearable Weight: Feminism, Western Culture, and the Body. Berkley: University of California Press. Butler, Kelsey, and Patricia Hurtado. 2022. Is a Fetus a Person? The Next Big Abortion Fight Centers on Fetal Rights. Bloomberg, September 6. (https://www.bloomberg.com/news/articles/2022-09-06/is-a-fetus-a-person-the-next-bigabortion-fight-quicktake). Carlisle, Madeleine. 2022. Fetal Personhood Laws Are a New Frontier in the Battle Over Reproductive Rights. Time, June 28. (https://time.com/6191886/fetal-personhood-lawsroe-abortion). Centers for Disease Control and Prevention. 2021. Maternal Mortality Rates in the United States, 2021. Retrieved April 13, 2023. (https://www.cdc.gov/nchs/data/hestat/maternalmortality/2021/maternal-mortality-rates-2021.htm) Cleveland Clinic. 2023. Due Date Calculator. Retrieved Apr 22, 2023. (https://my.clevelandclinic.org/health/diagnostics/22052-due-date-calculator) Congress.gov. 2021-2022. H.R.1011 - Life at Conception Act. Retrieved April 19, 2023 (https://www.congress.gov/bill/117th-congress/house-bill/1011/titles) Crenshaw, Kimberl. 1991. Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color. Stanford Law Review 43(6): 1241-1299. De Beauvoir, Simone. 1949. Woman as Other. Pp. 268-270 in Social Theory: The Multicultural, Global, and Classic Readings 6th ed, edited by Charles Lemert. Philadelphia: Westview Press. Dedoose Version 7.0.23, web application for managing, analyzing, and presenting qualitative and mixed method research data (2016). Los Angeles, CA: SocioCultural Research Consultants, LLC www.dedoose.com Feagin Joe R., Hernn Vera and Kimberley Ducey. 2015. Liberation Sociology 3rd ed. New York: Taylor & Francis. Fielding-Singh, Priya and Amelia Dmowska. 2022. Obstetric Gaslighting and the Denial of Mothers Realities. Social Science & Medicine 301. doi: 10.1016/j.socscimed.2022.114938. Goodwin, Michele. 2021. Pregnancy and the New Jane Crow. Connecticut Law Review 53(3): 543-569. Guttmacher Institute. 2023. State Legislation Tracker: Major Developments in Sexual & Reproductive Health. Retrieved Apr 23, 2023. (https://www.guttmacher.org/statelegislation-tracker) Hill Collins, Patricia. 1990. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. New York: Taylor & Francis. Lehdonvirta, Vili, Atte Oksanen, Pekka Rsnen, and Grant Blank. 2020. Social Media, Web, and Panel Surveys: Using Non-Probability Samples in Social and Policy Research. Policy & Internet doi: 10.1002/poi3.238 Lorde, Audre. 1979. The Masters Tools Will Never Dismantle the Masters House. Pp. 340342 in Social Theory: The Multicultural, Global, and Classic Readings 6th ed, edited by Charles Lemert. Philadelphia: Westview Press. Luna, Zakiya. 2020. Reproductive Rights as Human Rights: Women of Color and the Fight for Reproductive Justice. New York: New York University Press. Martin, Emily. 1991. The Egg and the Sperm: How Science Has Constructed a Romance Based on Stereotypical Male-Female Roles. The University of Chicago Press 16(3): 485-501. Martin, Emily. 1998. The Fetus as Intruder: Mothers Bodies and Medical Metaphors. Pp. 125142 in Cyborg Babies: From Techno-Sex to Techno-Tots, edited by R. Davis-Floyd and J. Dumit. New York: Routledge. Mitchell, Lisa M., and Eugenia Georges. 1998. Babys First Picture: The Cyborg Fetus of Ultrasound Imaging. Pp. 105-124 in Cyborg Babies: From Techno-Sex to Techno-Tots, edited by R. Davis-Floyd and J. Dumit. New York: Routledge. Morris, Theresa. 2013. Cut It Out: The C-Section Epidemic in America. New York & London: New York University Press. Nash, Catherine J. 2020. Patriarchy. International Encyclopedia of Human Geography, 43-47. doi: 10.1016/B978-0-08-102295-5.10206-9. OReilly, Andrea. 2010. Encyclopedia of Motherhood. Thousand Oaks, CA: Sage Publications, Inc. Pew Research Center. 2022. Americas Abortion Quandary. Retrieved Dec 12, 2022. (https://www.pewresearch.org/religion/2022/05/06/americas-abortion-quandary/) Pirtle, Whitney N. Laster, and Tashelle Wright. 2021. Structural Gendered Racism Revealed in Pandemic Times: Intersectional Approaches to Understanding Race and Gender Health Inequalities in COVID-19. Gender & Society, 35(2): 168-179. doi: 10.1177/08912432211001302 Rapp, Rayna. 1999. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge. Roberts, Dorothy. 1997. Killing the Black Body: Race, Reproduction, and the Meaning of Liberty. New York: Vintage Books. Sedig, Laura MD. 2016. Whats the Role of Autonomy in Patient- and Family-Centered Care When Patients and Family Members Dont Agree? AMA Journal of Ethics, 18(1): 12-17. doi: 10.1001/journalofethics.2017.18.1.ecas2-1601 Taylor, Jamila K. 2020. Structural Racism and Maternal Health Among Black Women. The Journal of Law, Medicine & Ethics, 48: 506-517. doi: 10.1177/1073110520958875 The New York Times. 2023. Tracking the states where abortion is now banned. Retrieved Apr. 13, 2023. (https://www.nytimes interactive/2022/us/abortion-laws-roe-v-wade.html.com/) Thomson, Judith J. [1971] 1996 Intervention and Reflection: Basic Issues in Medical Ethics. R. Munson. Reprint, Belmont, Wadsworth, 5: 69-80. Valenti, Jessica. 2010. The Purity Myth: How Americas Obsession with Virginity is Hurting Young Women. Berkeley, CA: Seal Press. Valenti, Jessica. 2023. Abortion, Every Day. A Tale of Two Lawsuits. Retrieved Apr. 13, 2023 (https://jessica.substack.com/p/a-tale-of-two-lawsuits). Waggoner, Miranda R. 2017. The Zero Trimester: Pre-pregnancy Care and the Politics of Reproductive Risk. Oakland: University of California Press. Appendix Appendix A - Link to the Survey https://uindy.co1.qualtrics.com/jfe/preview/previewId/0c6c0b25-fdab-4ff3-8fa3f200cbd08da7/SV_dgI4XnzqqbQnhu6?Q_CHL=preview&Q_SurveyVersionID=current Appendix B - Table 1- Descriptive Statistics Appendix C - Table 2 Table 2. Survey Question 18 Responses (Choose all that apply) Appendix D - Table 3 Table 3. Survey Question 24 Responses Appendix E - Table 4 Table 4. Survey Question 26 Responses  ...

... Beyond Resettlement: The Impact of Community on the Integration of Burmese Refugees in Marion County, Indiana Mamitiana Jenny Rakotoarisoa Andriamiseza Thesis Submitted in partial fulfillment of the requirements for the degree Master of Arts in Applied Sociology in the Department of Sociology University of Indianapolis April 2023 ___________________ Colleen Wynn, Ph.D. Assistant Professor of Sociology, Advisor ____________________ Elizabeth Ziff, Ph.D. Assistant Professor of Sociology, Reader 2 ACKNOWLEDGMENTS This thesis is a tribute to the people who have inspired me and contributed to shaping the person I am today. First and foremost, I dedicate this work to my beloved late grandfather (dadabe), Andriamiseza Clarel Yvon, who was a Supreme Court judge and a founding member of the Judges' Union of Madagascar. He was ranked among the 100 most powerful figures in the world by Who's Who magazine in 1991 for his leadership in advocating for judicial independence. He was also a talented poet and writer and was published under the pen name El Mousa. In his free time, he was a painter and a choir leader. I am honored to have been his grandchild and inspired by his dedication to justice, creativity, and leadership as well as his moral courage. To my grandmother (bebe), Rasoarison Berthe Aline, for raising me, sharing my love for reading, and for never stopping being young and fun. To my father (dada), who was also an international student, for teaching me to strive for excellence in everything I do and for introducing me to the joy and wonder of travel. To my late mother (neny), who was gone too soon but whose dreams for me remained. To my siblings, Jess, Holy, Zo, Anja, and Andy, for loving me. To my niece and nephew, Miangaly and Hiraina, for teaching me how to love. To my family and friends in Madagascar and around the world, for always showing up. To my professors, Dr. Wynn and Dr. Ziff, for their passion, support, and kindness. To the Burmese community, for their resilience and determination. And last but certainly not least, to my husband (malala), who is the best part of me. Lova, thank you for helping me become a better version of myself and for constantly sharing your knowledge, wisdom, and genius ideas with me. You are my most valuable person! 3 ABSTRACT This study investigates the integration of Burmese refugees in Neighborhood B, a Burmese ethnic enclave in Marion County, Indiana. It operationalizes integration with the adoption of the National Academies of Sciences, Engineering, and Medicine's (2015) definition of the concept which posits that the ultimate goal of integration is for immigrants and refugees to achieve a similar status to that of the native-born population. The study disaggregates the native-born population into three major groups, namely White, Black, and Hispanic. Using Census Bureau data, the study examines five domains of integration found in the framework proposed by Ager and Strang (2008), which are education, employment, housing, health, and rights and citizenship. The study employs seven socioeconomic indicators, namely educational attainment, employment status, household income, poverty status, tenure or housing occupation status, health coverage, and citizenship status, to examine these domains. The study finds that Burmese refugees in Neighborhood B have successfully integrated into their host society despite the limitations of the U.S. refugee admissions program. More specifically, the socioeconomic outcomes of Burmese refugees generally approximate that of White individuals, while tending to surpass that of Black individuals on average, and Hispanic individuals in some domains. The study suggests that the strength of the Burmese community in Neighborhood B, which fosters strong social networks, may be a possible explanation for this finding. 4 INTRODUCTION Since the passage of the Refugee Act of 1980, the United States has welcomed over two million refugees through its refugee admissions program (USRAP). Historically, it has admitted more refugees for permanent resettlement than any other country in the world. For refugees who are eligible for permanent resettlement, the U.S. provides a safe haven where they can start a new life, free from the fear of persecution, conflict, or violence. Unlike other migrants, refugees arrive in the United States under vulnerable circumstances. They do not voluntarily choose to migrate but are forced to leave their home countries because of circumstances outside of their control (Singer and Wilson 2006; Bernstein and DuBois 2018). Prior to being admitted to a country of resettlement, they often spend long periods of displacement in refugee camps or under other vulnerable and traumatic conditions (Singer and Wilson 2006; McCabe 2010; Capps et al. 2015; Bernstein and DuBois 2018; Gowayed 2022). Furthermore, due to their unplanned departure, many refugees arrive in the country with limited material possessions, and separated from family members and other social networks (McCabe 2010; Bernstein and DuBois 2018; Gowayed 2022). The United States provides integration services to support the transition of refugees into the country, however, previous research has shown that the U.S. refugee admissions program presents various challenges. More specifically, the programs emphasis on economic self-sufficiency and nonreliance on governmental assistance, i.e. time limited benefits and support, often creates further barriers to refugees successful integration rather than facilitates it (Kerwin 2012; Fix et al. 2017; Saksena and McMorrow 2019). Gowayed (2022) even argues that this emphasis on self-sufficiency integrates refugees into American poverty. Additionally, the USRAP lacks a system for tracking the long-term integration outcomes of refugees (Office of 5 Refugee Resettlement 2022). Instead, local agencies are only required to report on the employment status of refugees within 90 days of their arrival in order to measure their integration success, which discounts other essential aspects of integration, namely social, cultural, and civic (Bansak et al. 2018; Bernstein and DuBois 2018). While the USRAP provides a crucial opportunity for refugees to escape persecution, conflict, and violence, and resettle in the United States, one might ask, does the U.S. government provide sufficient support to help refugees not only start a new life but also achieve socioeconomic mobility? The broader goal of this study is to take a step towards answering this question by examining the integration of refugees who have resettled in the United States. Following the assumptions that integration happens at the neighborhood level (Seethaler-Wari 2018) and is contextual (Saksena and McMorrow 2019), and that premigration personal characteristics (including national origins) as well as experiences influence integration outcomes (Capps et al. 2015; Kallick and Mathema 2016; Fix et al. 2017; Evans and Fitzgerald 2017; Bansak et al. 2018), this study focuses on Burmese refugees who resettled in Marion County, Indiana. Examining this specific group is of particular significance because Burmese refugees constitute one of the largest refugee populations in the United States, with over 140,000 refugees resettled in the country since 2008 (Migration Policy Institute 2021; WRAPS 2022). Additionally, Indiana has played a critical role in providing a new home for thousands of Burmese refugees, with Marion County serving as the second largest Burmese ethnic enclave in the country. As this community continues to grow, there is a critical need to better understand the factors that contribute to their successful integration. Using U.S. Census Bureau data, primarily 5-year tract-level estimates from the American Community Survey (ACS), this study investigates the extent to which Burmese refugees have 6 achieved successful integration in Marion County, Indiana. To operationalize successful integration, the study adopts the National Academies of Sciences, Engineering, and Medicine's (2015) definition of integration which emphasizes the ultimate goal of integration, which is for immigrants and refugees (within and across generations) to achieve a similar status to that of the native-born population. The U.S. native-born population, however, is heterogeneous, and there is high variation in socioeconomic outcomes across races/ethnicities. Therefore, in this study, the native-born population is disaggregated into three major groups: the majority and most historically advantaged population (White), the most historically underserved and marginalized population (Black), and the largest immigrant population (Hispanic). It is worth noting that several studies have been conducted on the Burmese refugee community in Indiana, however, the majority of them have focused on narrow topics such as health issues, media portrayal, youth education, and political activism, rather than the broader integration of the community (Ritchey et al. 2009; White 2012; Williams 2012; McHenry et al. 2016; Tervo 2017; Ehmer and Kothari 2018; Kuo 2019; Kumar 2021; Lim 2022). Additionally, many studies have used Census Bureau data to examine refugee integration, but they have not focused on a single refugee community or one specific resettlement location (Trieu and Vang 2015; Capps et al. 2015; Kallick and Mathema 2016; Fix et al. 2017; Evans and Fitzgerald 2017). Therefore, this study is an essential contribution to the existing literature. It is important to mention that although the countrys official name changed to the Republic of the Union of Myanmar in 1989, this study uses the name Burma because pro-democracy supporters rejected the name imposed by the military junta, and the United States does not recognize it as it was not the result of a democratic process. Furthermore, referring to the country as Burma is an act of resistance for many refugees (Fike and Androff 2016). 7 LITERATURE REVIEW A brief history of the global refugee crisis The global refugee crisis is a complex and ongoing phenomenon that has been shaped by a variety of historical, political, economic, and social factors. While there have always been people who have been forced to flee their homes due to conflict, persecution, and other forms of violence, the modern era of refugee movements can be traced back to the aftermath of World War II (UNHCR 2023). The first international legal framework for addressing the rights of refugees was established in 1951, with the adoption of the United Nations Refugee Convention. This Convention defined who is a refugee and established the legal obligations of states to protect refugees, including non-refoulement, the principle that no one should be returned to a country where they would face persecution (UNHCR 1951). The Convention also established the United Nations High Commissioner for Refugees (UNHCR) to help protect and assist refugees. Over the following decades, the number of refugees increased due to ongoing conflicts and civil wars, including the wars in Indochina, the Balkans, and Africa (UNHCR 2023). In recent years, the number of refugees has risen dramatically due to conflicts in Syria, Afghanistan, South Sudan, Burma, and other countries. According to the UNHCR, by the end of 2020, there were 82.4 million people forcibly displaced worldwide, including 26.4 million refugees, 4.1 million asylum seekers, and 45.7 million internally displaced people (UNHCR 2020). It is worth noting that only 1% of the total global refugee population are ever deemed eligible for permanent resettlement into a host country (Gowayed 2022). 8 A brief history of the Burmese refugee crisis The Burmese refugee crisis is a complex issue that stems from a long history of political conflict, ethnic persecution, and human rights violations. It has its roots in the 1960s when military rule was established in Burma. The military-dominated government has been accused of widespread human rights violations, including ethnic cleansing and persecution of minority groups such as the Rohingya, resulting in the displacement of millions of people (Cox and Pawar 2006; Malseed 2009; Brough et al. 2013; Fike and Androff 2016). Burma was once a multiethnic society promoting exchange (Brough et al. 2013), but colonization by the British in 1885 created and exacerbated ethnic divisions (Charney 2009; Holliday 2010). Nationalist leader Aung San sought to promote cooperation between Burma's ethnic groups but was assassinated in 1947 while attempting to develop a federal government system sharing power between political units made up of different ethnic groups (Charney 2009; Fike and Androff 2016). Burma gained independence in 1948, but the lack of leadership and power gap led to a prolonged violent conflict between ethnic groups, intensified by a military coup in 1962 (Charney 2009; Malseed 2009; Holliday 2010). The military junta ruled the country as a dictatorship and brutally suppressed popular protests for democratic reform (Fike and Androff 2016). The most significant influx of Burmese refugees occurred in the late 1980s and early 1990s when the military cracked down on pro-democracy activists, leading up to 250,000 refugees fleeing to Thailand where they were housed in overcrowded camps along the border (Maizland 2022). Despite efforts to resettle them in other countries, many remained in the camps, living in harsh conditions with limited access to healthcare and education (Amnesty International 2021). In 2012, sectarian violence broke out in Rakhine state, where the Rohingya minority resides, leading to the displacement of thousands of people (UNHCR 2021). This sparked a new 9 wave of refugee arrivals in neighboring countries, including Bangladesh, Malaysia, and Thailand (UNHCR 2021). For decades, Burma has suffered from repressive military rule, widespread poverty, and neglect, and discrimination against minority ethnic groups (Pedersen 2008; Maizland 2022). The ongoing civil war has resulted in the current Burmese refugee crisis, which remains a significant humanitarian concern. As of 2021, the UNHCR has recorded over 1 million displaced people within and from Burma, with almost 400,000 internally displaced and 800,000 stateless individuals (UNHCR 2021). Burmese refugees in the United States Refugees from Burma began resettling in the United States in large numbers around 2008 (WRAPS 2022). Since then, the country resettled more than 140,000 Burmese refugees, with significant populations found in Minnesota, California, Indiana, Texas, and New York (Pew Research Center 2019; Migration Policy Institute 2021). Between the fiscal year 2010 and 2020, refugees from Burma made up 21% of the total refugee population admitted into the country (Migration Policy Institute 2021). Burmese refugees in the United States are a diverse population, reflecting the diversity of Burma itself. The largest ethnic group of Burmese refugees in the U.S. are Karen, accounting for approximately 45% of all Burmese refugees (Migration Policy Institute 2021). The Karen are an ethnic minority group that has faced persecution and violence in Burma, and many have fled to neighboring countries such as Thailand and Malaysia before resettling in the United States (Cultural Orientation Resource Center 2023). The Karenni are another significant ethnic group among Burmese refugees in the U.S., accounting for approximately 10% of all Burmese refugees (Migration Policy Institute 2021). The Karenni are an ethnic minority group that has also faced 10 persecution and violence in Burma, particularly due to their struggle for autonomy (Cultural Orientation Resource Center 2023). The Chin are another significant ethnic group among Burmese refugees in the U.S., accounting for approximately 9% of all Burmese refugees (Migration Policy Institute 2021). The Chin are an ethnic minority group that has faced persecution and discrimination in Burma due to their religious beliefs and cultural practices. In addition to these major ethnic groups, there are also significant numbers of refugees from other ethnic groups such as the Rohingya, Mon, and Shan. When it comes to religion, approximately 90% of Burmese refugees in the U.S. are Buddhist (Migration Policy Institute 2021). This reflects the fact that Buddhism is the dominant religion in Burma, with over 85% of the population identifying as Buddhist. The same report by the Migration Policy Institute found that roughly 7% of Burmese refugees in the U.S. are Christian, with many belonging to the Karen Baptist Church. There are also smaller numbers of Muslim refugees, particularly from the Rohingya community in Burma, who have largely faced persecution and violence due to their religion. Overall, the Burmese refugee population in the United States is a vulnerable group that requires more assistance with integration compared to other refugee groups (Agbnyiga et al. 2012). Kuoch et al. (2018) found that Burmese refugees who spent more time in refugee camps had a higher risk of experiencing mental health issues such as depression, anxiety, and post-traumatic stress disorder (PTSD). They also found that refugees who experienced traumatic events in their home country were more likely to have mental health issues regardless of their length of stay in a refugee camp. Similarly, Mehta et al. (2019) found that Burmese refugees who had spent time in refugee camps were more likely to experience social isolation and limited social networks in the United States. 11 Furthermore, the ethnic diversity of Burmese refugees in the Unites States presents a challenge for resettlement agencies, who must ensure that refugees have access to appropriate resources and services. Some Burmese ethnic groups may find it easier to adapt while others face significant challenges in the integration process (Barron et al. 2007; Fike and Androff 2016). Additionally, many Burmese refugees tend to associate primarily with members of their own ethnic group rather than the larger Burmese population in the U.S. due to cultural and linguistic differences and the history of intergroup ethnic conflict (Fike and Androff 2016). This can lead to social isolation and a lack of connection with the broader American society. As they try to adjust to their new environment in the U.S., Burmese refugees may also face difficulties pertaining to language barriers/communication; access to resources and services, including education, healthcare, and employment; navigating the complex legal and bureaucratic systems; cultural differences and unfamiliar norms; worries about family back home; and discrimination in their host society (Hickey 2007; Tonsing and Vungkhanching 2020). Service providers may also struggle to meet the unique needs of Burmese refugees due to the ongoing ethnic conflict in Burma which has led to a deep mistrust of the government and authority in general (Fike and Androff 2016). As a result, Burmese refugees may be hesitant to seek out services or interact with authority figures, further exacerbating their isolation and vulnerability. The U.S refugee admissions program In the aftermath of World War II, the United States began to establish a formal system for admitting refugees. The Displaced Persons Act of 1948 provided for the admission of refugees from Europe, including those who had been displaced by the war. The Refugee Relief Act of 1953 expanded the scope of the U.S. refugee program to include refugees from around the world. 12 In 1980, the U.S. government passed the Refugee Act, which created a permanent and standardized system for admitting refugees. The act defined a refugee as someone who had fled persecution or the fear of persecution based on race, religion, nationality, political opinion, or membership in a particular social group. The act also established a process for determining whether an individual met this definition and for resettling refugees in the United States. Refugees are subject to a lengthy and rigorous screening process prior to determining their eligibility to resettle in the U.S. The UNHCR refers resettlement cases to the US Department of State, which collaborates with non-governmental organizations and the International Organization for Migration (IOM) to collect information and keep refugees informed about the progress of their cases. Refugees undergo screening and interviews by officers from the U.S. Citizenship and Immigration Service (USCIS), with various national security agencies involved in background checks and medical examinations. If successful, refugees receive cultural orientation before travelling to the United States. The U.S. resettlement program is a collaboration between federal agencies and nine national resettlement agencies, which determine the local placement of refugees and offer support through local affiliates. Upon arrival in the United States, refugees face a complex resettlement process that involves multiple steps and stakeholders (Fix et al. 2017). While the goal of the U.S. refugee resettlement program (USRAP) is oriented towards integration, the specific goal of the refugee resettlement process is to encourage refugees to be self-sufficient and enter the labor market as quickly as possible (Chambers 2017; Saksena and McMorrow 2019; Portes and Rumbaut 2019; Gowayed 2022). To achieve this goal, refugees are provided with transitional assistance services including housing arrangements, employment support, English language training, enrollment of children in schools, and application for public assistance programs (Fix et al. 2017). However, 13 refugees with no pre-existing ethnic community or family ties in the country may face additional challenges as they are assigned to a local resettlement location based on various factors, including the availability of jobs and affordable housing, the receptivity of the local community, and the capacity of local resettlement agencies (Bansak et al. 2018; Singer and Wilson 2006). Refugees are eligible for certain privileges, including the ability to apply for legal permanent residence one year after their arrival, a pathway towards citizenship, an employment authorization, and medical benefits (Singer and Wilson 2006; Ninh 2013; Gowayed 2022). They are also entitled to federal cash assistance, known as Welcome Money, for their initial needs and rent for the first 90 days, and an additional amount, called Flex Money, to be spent on any refugee in need (Gowayed 2022). However, refugees are typically eligible for cash assistance and medical benefits for no longer than eight months after their arrival, and local resettlement agencies provide transitional assistance services for the refugees' first four to eight months in the country (Singer and Wilson 2006). The limitations of the U.S. refugee admissions program While previous literature has recognized the importance of successful integration for both refugees and receiving communities, it has also identified several limitations and challenges that affect the U.S. refugee resettlement programs ability to effectively address the needs of refugees and facilitate successful integration. Economic self-sufficiency is a crucial goal of the U.S. refugee resettlement program, but research shows that early emphasis on self-sufficiency can create additional barriers for refugees. Saksena and McMorrow (2019) argue that this emphasis can negatively impact refugees' ability to acquire English language skills and limit their access to well-paid jobs, healthcare, affordable 14 housing, and transportation. Brick et al. (2010) also argue that the emphasis on early economic independence risks limiting opportunities for refugees to become accustomed to their new surroundings, find jobs appropriate to their skill sets, and access social services that could improve their long-term outcomes. Gowayed (2022) finds that pushing refugees to enter the labor market quickly can lead to low-skilled and low-income employment, creating additional stress in an already difficult situation. Furthermore, it overlooks a more robust understanding of integration which includes psycho-social, linguistic, and cultural integration (Ott 2011). The U.S. refugee resettlement program also discounts refugees' premigration credentials and experiences, denying their human capital and making it difficult for them to find better employment (Gowayed 2022). Lara-Garca (2020) describes the U.S. refugee resettlement program as treating refugees as "blank states. Furthermore, while acknowledging differences between refugees and other migrants, the program often overlooks differences among refugee groups. Bansak et al. (2018), however, found that personal characteristics and the geographical context of resettlement have a significant influence on refugee integration. Examining variation in socioeconomic outcomes of five refugee groups of different nationalities across four states, Fix et al. (2017) found that national origins, rather than the location of resettlement, are highly correlated with refugees' employment, unemployment, and income. Evans and Fitzgerald (2017) also found variations in the socioeconomic outcomes of refugees who resettled in the United States before and after age 13, highlighting the importance of considering refugees' unique experiences and circumstances. Similarly, various studies found that integration outcomes are not only affected by time spent in the U.S. but also by the country of origin, professional and educational background, and gender (Capps et al. 2015; Kallick and Mathema 2016; Fix et al. 2017). 15 Inadequate information sharing is another limitation of the U.S. refugee resettlement program. Brown and Scribner (2014) highlight the failure of participating resettlement agencies to share information adequately, especially regarding the medical and mental health status of refugees. The emotional and psychological trauma that many refugees experience can have long-lasting impacts on their well-being and their ability to integrate. However, in many cases, due to the lack of information sharing, illnesses have gone untreated, and treatment has been delayed (Brown and Scribner 2014). Furthermore, the State Department does not provide resettlement agencies with UNHCR's referral for resettlement, which provides an in-depth analysis of a refugee's life and experiences, due to confidentiality concerns. This lack of information sharing can make it challenging for resettlement agencies to make placement decisions for vulnerable populations that require special forms of support (Brown and Scribner 2014). Defining refugee integration The concept of refugee integration is complex and context-specific, making it difficult to achieve a universal definition (Ager and Strang 2008). Saksena and McMorrow (2019) assert that refugee integration remains "individualized, contested, and contextual." Alba and Richard (1997) view integration as the process during which newcomers or minorities are incorporated into the social structure of the host society. Gillin and Gillin (1948) argue that integration is about organization rather than homogeneity. Bosswick and Heckmann (2006) emphasize that the inclusion of individuals in a system, the creation of relationships among individuals, their attitudes toward society, and the conscious motivated interaction and cooperation of individuals and groups are essential aspects of integration. 16 Laurentsyeva and Venturini (2017) view integration from two angles: for immigrants, developing a sense of belonging to the host society, and for the native population, accepting immigrants. This mutual recognition enhances individual well-being, social cohesion, and has significant economic implications. Similarly, Castles (1993) defines integration as a process of mutual accommodation between immigrants and the majority population. It implies that immigrant groups will cease to be distinctive in culture and behavior over time, with adaptation viewed as a two-way process where minority and majority groups learn from each other and embrace each other's culture. Petsod et al. (2006) also define immigrant integration as a dynamic, two-way process where both newcomers and the receiving society collaborate to build cohesive communities that are secure and vibrant. Newcomers actively adjust to their new homes by learning the language, culture, and customs of the native population, while the pre-established community actively incorporates them into the economic, social, and civic life of the region. This exchange transforms both the new arrivals and the native population (Gonzales 2016). The Migration Policy Institute (2022) defines integration as the process of economic mobility and social inclusion for newcomers and their children, encompassing the institutions and mechanisms that promote development and growth within society. These include early childhood care, elementary, postsecondary, and adult education systems, workforce development, health care, and the provision of government services to communities with linguistic diversity, among others. The National Academies of Sciences, Engineering and Medicines (2015) definition of refugee integration, as adopted in this study, emphasizes the ultimate goal of integration, which is for immigrants and refugees (within and across generations) to achieve a similar status to that of the native-born population. 17 Measuring refugee integration As seen in the previous section, measuring refugee integration is a challenging process. The lack of agreement on what integration means makes it difficult to develop standardized indicators to measure it (Ager and Strang 2008). Some studies use employment rates, while others use educational attainment or language proficiency, among others. This inconsistency can make comparisons across studies and regions difficult. Measuring refugee integration also takes time, and the length of the process varies depending on the country, region, and individual circumstances (Colic-Peisker 2015; Koser 2017). Therefore, short-term measurements might not capture the full extent of integration, while long-term measurements might be too costly or difficult to carry out. Additionally, availability and quality of data on refugees are limited, especially data pertaining to refugees social, cultural, and civic outcomes (Bernstein and DuBois 2018). Furthermore, the level of refugee integration depends on contextual factors such as the availability of resources, policies and support services, the social and cultural attitudes of the host community, and the refugees personal characteristics, among others (Ager and Strang 2008; Bhabha and Schmidt 2017). Therefore, the measurement of integration may vary depending on the refugee group and the place of resettlement. Seethaler-Wari (2018) argues that integration happens at the neighborhood level and there is no one solution that fits all refugees or all cities. Similarly, Bernstein and DuBois (2018) emphasize that there is not one but multiple refugee experiences. Various studies, however, have attempted to measure refugee integration including four major studies that utilized data from the Census Bureau, primarily the decennial census and the annual American Community Survey (ACS). These studies focus on three main areas of integration: economic, linguistic, and civic. They examine how refugee integration outcomes 18 compare to those of the native-born population and non-refugee immigrant populations, as well as differences across national origin groups and arrival cohorts within the refugee population (Bernstein and DuBois 2018). Capps et al. (2015) conducted a study comparing the employment and welfare outcomes of refugees who arrived in 1980 and 2011. The study found that, overall, employment rates were higher among male refugees than among native-born men, but that female refugees had similar employment rates to native-born women. The study also found that refugees were more likely than non-refugee immigrants and the native-born population to receive food stamps, cash assistance, and public health insurance. However, the receipt of these benefits declined with more time spent in the U.S.. The study also found that many recent refugees faced challenges with literacy, and over half of those with lower literacy and education attainment had family incomes below twice the federal poverty level. On average, refugees had higher educational attainment than non-refugee immigrants, but lower than the native-born population. Kallick and Mathema (2016) conducted a study examining the labor force participation, wages, career advancement, entrepreneurship, homeownership, and English proficiency of four refugee groups: Somali, Burmese, Hmong, and Bosnian, who arrived in the U.S. between 1982 and 2014. The study found that all four refugee groups experienced an increase in labor force participation, with longer-term residents (more than 10 years) having higher rates than newer arrivals (10 years or less). Newly arrived refugee women were found to be less likely than native-born women to participate in the labor force, but rates for longer-term residents increased to nearly meet or exceed that of native-born women, except for the Hmong. The study also found that median wages increased with more time spent in the U.S., but noted the need to account for racial and gender differences within the native-born workforce. The researchers observed that 19 refugees in their studied groups were able to advance in their careers over time, with many moving from blue-collar to white-collar jobs after 10 years in the country. Additionally, immigrants were found to be more likely to be business owners than the native-born population. Homeownership rates varied by national origin group, with higher rates observed for Burmese and Bosnians who had been in the country for 10 years or more, but lower rates for the other two groups analyzed. The study also noted that English proficiency improved with more time spent in the US, and that longer-term residents in their four refugee groups (21 years or more) were more likely to acquire American citizenship compared to all immigrants. Fix, Hooper, and Zong (2017) conducted a study of Burmese, Cuban, Iraqi, Russian, and Vietnamese refugees who arrived between 1980 and 2013. They found that underemployment was a significant issue for several of the analyzed groups. Approximately half of Iraqi, Cuban, and Burmese refugees were found to be underemployed, meaning that they held a bachelors degree but were either unemployed or employed in a low-skilled job. In comparison, only 18% of the native-born population faced underemployment. The study also noted that wage outcomes were closely related to educational attainment. Evans and Fitzgerald (2017) conducted a study of refugees who arrived in the US between 1990 and 2014, with separate analyses for arriving adults and youths. The study found that refugees participate in the labor force at rates equivalent to the native-born population within 4 years of their arrival in the U.S. While refugees' median wages increase with more time spent in the U.S., they remain lower than the wages of native-born individuals, even for refugees who have spent 20 years or more in the country. The study also observed a decline in benefits use with longer stays in the U.S., with food stamp receipt dropping from 70% in the first year to 20% after 12 years. Using a tax projection program, the researchers calculated the net cost over a 20 20-year period following initial resettlement and discovered that refugees arriving as adults (aged 18 to 45) ultimately contribute more than they cost during this period. They also found that after 8 years in the U.S., refugees are contributing more in taxes than they receive in government benefits. The study highlighted that refugees who arrive as young children have better educational outcomes than those who arrive at older ages. Overall, these studies show that refugees generally face challenges with employment, education, and accessing government benefits, but they successfully integrate into American society over time. Their labor force participation rates increase to meet or exceed those of native-born individuals, income levels rise, reliance on public benefits decrease, and English language skills improve. Furthermore, many refugees acquire American citizenship and even become homeowners and business owners, making significant contributions to their communities. Refugee integration framework Ager and Strang (2008) have developed a conceptual integration framework that proposes a structured approach to understanding and measuring refugee integration for individuals and communities. While the framework does not seek to impose a uniform approach or a comprehensive measure of the concept of integration, it identifies the key factors that contribute to successful integration. The framework is structured around ten domains that are crucial to the integration of refugees. The domains are grouped into four levels of integration, namely markers and means, social connections, facilitators, and foundation. The first level, markers and means, encompasses four domains: employment, housing, education, and health (Ager and Strang 2008). Together, 21 these domains serve as markers of integration and the means by which refugees can attain successful integration outcomes. The second level, social connections, consists of three domains: social bridges, social bonds, and social links. These domains underscore the significance of relationships in understanding the integration process. Social bridges refer to connections with individuals outside the refugee community, social bonds refer to ties within the community, and social links refer to connections with institutions. The third level, facilitators, includes two domains: language and cultural knowledge, and safety and stability. These domains represent the key facilitating factors for successful integration. Language and cultural knowledge enable refugees to communicate and navigate the host society, while safety and stability provide the necessary conditions for integration to occur. The fourth and final level, foundation, comprises one domain: rights and citizenship. This domain focuses upon the enablement of rights for those granted refugee status. For each domain, Ager and Strang (2008) have identified around 10 indicators to assess attainment. CURRENT STUDY The goal of this study is to investigate the extent to which Burmese refugees have achieved successful integration into American society. To operationalize successful integration, the study adopts the National Academies of Sciences, Engineering, and Medicine's (2015) definition of integration which, rather than focusing on the process of integration, emphasizes its ultimate goal which is for immigrants and refugees (within and across generations) to achieve a similar status to that of the native-born population. The U.S. native-born population, however, is heterogeneous, and there is high variation in socioeconomic outcomes across races/ethnicities. 22 Therefore, in this study, the native-born population is disaggregated into three major groups: the majority and most historically advantaged population (White), the most historically underserved and marginalized population (Black), and the largest immigrant population (Hispanic). This study utilizes publicly available data from the American Community Survey to investigate five domains of integration based on the framework proposed by Ager and Strang (2008). These domains include education, employment, housing, health, and rights and citizenship. The study employs seven socioeconomic indicators, namely educational attainment, employment status, household income, poverty status, tenure or housing occupation status, health coverage, and citizenship status, to examine these domains. The goal is to compare the mean socioeconomic outcomes of Asian individuals (who are used as a proxy for Burmese refugees) to those of White, Black, and Hispanic individuals in Neighborhood B, which is a Burmese ethnic enclave located in Marion County, Indiana. To conduct the comparative analysis, a series of independent-sample t-tests are utilized. DATA AND METHODOLOGY The American Community Survey (ACS) is a national survey conducted by the U.S. Census Bureau on an ongoing basis. It collects detailed demographic, socioeconomic, and housing data from 3.5 million randomly selected housing units per year, with no unit selected more than once every five years. The survey is conducted using four modes: internet, mail, phone interviews, and in-person interviews. To protect respondents' privacy, individual responses are aggregated into estimates at various geographic summary levels, including states, counties, cities, congressional districts, metropolitan statistical areas, tracts, and block groups. The ACS provides 1-year estimates for geographic areas with at least 65,000 people, and 5-year estimates 23 for smaller geographic areas, such as census tracts and block groups. The multiyear estimates increase the statistical reliability of data for small population areas. This study utilized data from the American Community Survey's 5-year estimates at the tract-level, which were released in 2021. The sample for this study consisted of 23 tracts located in Marion County, Indiana that had a significant Burmese population. These 23 tracts are geographically connected and were examined as a single large neighborhood area, referred to as Neighborhood B in this study. Although the ACS does not provide publicly available information specifically broken down for the Burmese population, various tables in the ACS have "universes" or base reference totals against which all other characteristics are compared. In Neighborhood B, the Asian population is predominantly of Burmese origin as shown in Table 1 and the area is recognized as a Burmese ethnic enclave. According to the 2021 American Community Survey, the Burmese population in Marion County, Indiana was estimated to be over 9,000, with the majority residing in Neighborhood B. This concentration of the Burmese population has resulted in the emergence of various Burmese-owned businesses, such as grocery stores, restaurants, and other services, making the area a cultural and social hub for the Burmese community. Additionally, the Burmese language is widely spoken in Neighborhood B, and there are various cultural events and celebrations throughout the year that are unique to the Burmese community. Thus, the study used the "total Asian population" universe as a proxy for the Burmese refugee population. It's worth noting that several other tracts in Marion County, Indiana had a significant proportion of Burmese population (>50% of the total Asian population), but were excluded from the sample because they were not located within or near Neighborhood B. A comparative analysis was conducted to examine the mean socioeconomic outcomes of Asian individuals in comparison to White, Black, and Hispanic individuals, respectively. The 24 study employed a series of independent-sample t-tests, with each racial/ethnic group serving as an independent variable and the socioeconomic outcomes serving as dependent variables. Seven socioeconomic outcomes were selected as dependent variables: educational attainment, employment status, household income, poverty status, tenure, health coverage, and citizenship status. The methods for testing each variable are described below. For the first dependent variable, educational attainment, a categorical variable with four categories (less than high school degree, high school degree, some college, and bachelor's degree or more) was used. To test the mean differences between the Asian population and each of the other groups across the four categories, twelve independent t-tests were conducted, treating each category as a unique dependent variable. For each category, the dependent variable was defined as the percentage of individuals aged 16 years or older with less than high school degree, with high school degree, with some college, or with bachelor's degree or more. Specifically, the first three t-tests were conducted to compare the Asian population with each of the other groups in the less than high school degree category, the second three t-tests were conducted in the high school degree category, the third three t-tests were conducted in the some college category, and the last three t-tests were conducted in the bachelor's degree or more category. The second dependent variable tested was employment status, which was operationalized as the percentage of individuals aged 16 years or older unemployed in each group. Three independent t-tests were conducted to compare the Asian population with each of the other three groups. The third dependent variable tested was household income, which was operationalized as the percentage of households with income below the median household income in Marion County, Indiana. Three independent t-tests were conducted to compare the Asian population with 25 each of the other three groups. The fourth dependent variable tested was poverty status, which was operationalized as the percentage of individuals with income in the past 12 months below poverty level. Three independent t-tests were conducted to compare the Asian population with each of the other three groups. The fifth dependent variable tested was housing tenure, which was operationalized as the percentage of owner-occupied housing units in Neighborhood B. Three independent t-tests were conducted to compare the Asian population with each of the other three groups. The sixth dependent variable tested was health coverage, which was operationalized as the percentage of individuals with health insurance coverage. Three independent t-tests were conducted to compare the Asian population with each of the other three groups. The last dependent variable tested was citizenship status, which was operationalized as the percentage of individuals without American citizenship. One independent t-test was conducted to compare the Asian population with the Hispanic population. The significance level for all t-tests was set at p < .05. Table 1: Total Asian Population and Percent Burmese By Tract in Neighborhood B, 5-year American Community Survey estimates 2021 Tract # Total population Total foreign-born Asian population Total foreign-born Burmese population % Burmese foreign-born from Asian population 3801.01 7,314 371 171 46.09% 3801.02 3,763 1,293 983 76.02% 3803.02 2,492 47 9 19.15% 3805.02 3,968 29 7 24.14% 3806 5,983 81 46 56.79% 3807 6,817 1,135 844 74.36% 26 Table 1, continued: Total Asian Population and Percent Burmese By Tract in Neighborhood B, 5-year American Community Survey estimates 2021 Tract # Total population Total foreign-born Asian population Total foreign-born Burmese population % Burmese foreign-born from Asian population 3808 2,963 68 64 94.12% 3809.01 5,309 1,073 898 83.69% 3809.02 5,979 401 184 45.88% 3810.02 3,507 19 8 42.10% 3810.03 3,311 751 660 87.88% 3810.04 3,298 845 636 75.27% 3811.01 5,753 423 248 58.63% 3811.02 7,199 1,200 473 39.42% 3812.03 3,247 1,008 760 75.40% 3812.04 2,937 395 45 11.39% 3812.05 6,985 1,225 937 76.49% 3812.06 4,494 973 774 79.55% 3812.07 4,272 992 891 89.82% 3901.03 3,151 71 40 56.34% 3901.04 6,934 250 175 70% 3904.05 4,223 827 135 16.32% 3904.08 5,206 78 47 60.26% 109,105 13,555 9,035 66.65% Total 27 RESULTS Descriptive results The descriptive statistics for each socioeconomic outcome by race/ethnicity are presented in Table 2. In regard to educational attainment, the table shows that a large proportion of Asian people in Neighborhood B, 37%, have less than a high school degree, whereas 10% of White people, 14% of Black people, and 38% of Hispanic people fall into this category. Twenty-eight percent of Asian people have a high school degree, which is higher than the percentages for Hispanic people (21%), but lower than those for White (33%) and Black (32%) populations. In terms of higher education, only 7% of Asian people have some college degree, whereas 31% of White people, 18% of Black people, and 18% of Hispanic people fall into this category. Twenty-three percent of Asian people hold a bachelor's degree or more, which is higher than the percentages for Black (16%) and Hispanic (13%) populations, but slightly lower than the percentage for White people (26%). When it comes to employment status, 67% of Asian people are employed which is higher than the employment rate of White (62%) and Black (65%), but lower than that of Hispanic (68%) populations. In terms of household income, a majority of households from all racial and ethnic groups have an income below the median household income in Marion County, Indiana. Specifically, 52% of Asian households have an income below the median, along with 54% of White, 57% of Black, and 57% of Hispanic households. In regard to poverty status, 20% of Asian people have an income below the poverty level which is higher than the rates of White (13%) and Hispanic (13%) populations but lower than that of Black people (29%). When it comes to tenure, 54% of Asian housing units are owner-occupied which is slightly lower than the rate of White people (58%) but higher than that of Black (14%) and Hispanic (36%) populations. 28 In terms of health insurance coverage, 89% of Asian people are covered by health insurance which is higher than the rates of White (86%), Black (78%), and Hispanic (82%) populations. In regard to citizenship status, 45% of Asian people have obtained American citizenship, compared to 74% of Hispanic people. Table 2: Descriptive Statistics of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean Standard Deviation Minimum Maximum N % of Asian with less than high school 36.96% .2774865 0 .8596974 23 % of Asian with high school 28.13% .2094027 0 .64 23 % of Asian with some college 6.77% .1031758 0 .3783784 23 % of Asian with bachelors degree or more 23.13% .20623 0 .7029703 23 % of White with less than high school 9.94% .0797714 .0107099 .360157 23 % of White with high school 32.98% .0783821 .1785045 .4761209 23 % of White with some college 31.03% .0834834 .1020608 .4921891 23 % of White with bachelors degree or more 26.05% .1313804 .0677134 .5069222 23 % of Black with less than high school 14.36% .2566936 0 1 23 % of Black with high school 31.75% .3370382 0 1 23 29 Table 2, continued: Descriptive Statistics of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean Standard Deviation Minimum Maximum N % of Black with some college 17.70% .2131752 0 .6666667 23 % of Black with bachelors degree or more 16.18% .2699963 0 .9411765 23 % of Hispanic with less than high school 37.53% .3252247 0 .9333333 23 % of Hispanic with high school 20.97% .2961711 0 .9123712 23 % of Hispanic with some college 18.19% .2165036 0 .85 23 % of Hispanic with bachelors degree or more 13.31% .178634 0 .5729167 23 % of Asian employed 66.92% .1395383 .3898305 1 23 % of White employed 62.10% .0960215 .305 .7718019 23 % of Black employed 64.55% .3333508 0 1 23 % of Hispanic employed 67.73% .2721771 0 1 23 % of Asian household income below median 52.12% .3056712 0 1 23 % of White household income below median 53.87% .1539612 .3032399 .8050931 23 % of Black household income below median 57.10% .4255658 0 1 23 30 Table 2, continued: Descriptive Statistics of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean Standard Deviation Minimum Maximum N % of Hispanic household income below median 56.76% .3834527 0 1 23 % of Asian income below poverty 20.36% .2828079 0 1 23 % of White income below poverty 13.21% .0956618 .0111821 .361349 23 % of Black income below poverty 29.02% .3369339 0 1 23 % of Hispanic income below poverty 13.69% .2097848 0 .8195488 23 % of Asian owner-occupied housing units 54.20% .3930307 0 1 23 % of White owner-occupied housing units 57.74% .2510327 .1204701 .980121 23 % of Black owner-occupied housing units 14.02% .2496845 0 1 23 % of Hispanic owner-occupied housing units 36.87% .4020618 0 1 23 % of Asian with health coverage 89.02% .1402066 .529661 1 23 % of White with health coverage 85.72% .2952985 0 1 23 % of Black with health coverage 78.59% .3620997 0 1 23 31 Table 2, continued: Descriptive Statistics of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean Standard Deviation Minimum Maximum N % of Hispanic with health coverage 81.93% .2550815 0 1 23 % of Asian with American citizenship 45.03% .2114413 0 .822884 23 % of Hispanic with American citizenship 74.13% .3105726 0 1 23 T-test results The independent-sample t-tests for each socioeconomic outcome by race/ethnicity are presented in Table 3. The results show that there are significant differences in the proportion of individuals without a high school degree between Asian (.3696281) and White (.0994044), as well as between Asian and Black (.1436061) populations, with the rate of individuals without a high school degree being higher among Asians compared to Whites and Blacks. However, no significant difference is found between Asian and Hispanic (.3752934) populations. Moreover, there is a significant difference in the proportion of individuals with some college degree between Asian (.0677036) and White (.3103063), Asian and Black (.1770408), and Asian and Hispanic (.1818607) populations. This reveals that the rate of individuals with some college degree is lower among Asians compared to Whites, Blacks, and Hispanics. However, there is no significant difference between Asians and any of the other racial/ethnic groups in terms of the proportion of individuals with a high school degree or a bachelor's degree or higher. The study also found no significant difference between Asians and any of the other racial/ethnic groups in terms of employment status, household income, poverty status, and health coverage. However, 32 there is a significant difference in the proportion of owner-occupied housing units between Asian (.3930307) and Black (.1401865) populations, with the rate of Asian owner-occupied units being higher than Black owner-occupied units. There is no significant difference between Asian and White as well as Hispanic populations in this regard. Finally, the study found a significant difference in the proportion of individuals with American citizenship between Asian (.4503133) and Hispanic (.7412614) populations, with the rate of Asian people with American citizenship being lower than that of Hispanic people. Table 3: Independent-Sample T-tests of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean t Degrees of freedom Significance % with less than high school Asian White Black Hispanic .3696281 .0994044 .1436061 .3752934 3.8250 2.6476 -0.0493 22 22 22 ** * NS % with high school Asian White Black Hispanic .2813519 .3298045 .3175141 .2097489 -0.8937 -0.4209 0.8384 22 22 22 NS NS NS % with some college Asian White Black Hispanic .0677036 .310363 .1770409 .1818607 -8.0908 -2.1280 -2.3084 22 22 22 *** ** ** % with bachelors or higher Asian White Black Hispanic .2313165 .2604848 .161839 .133097 -0.5316 0.9658 1.7916 22 22 22 NS NS NS 33 Table 3, continued: Independent-Sample T-tests of Socioeconomic Outcomes by Racial/Ethnic Group in Neighborhood B, 5-year American Community Survey estimates 2021 Variable Mean t % of employed Asian White Black Hispanic .6691891 .6210074 .6454651 .6773127 1.6670 0.3148 -0.1279 22 22 22 NS NS NS % of household income below median Asian White Black Hispanic .5211762 .5387398 .5709703 .5676331 -0.2587 -0.4572 -0.4838 22 22 22 NS NS NS % of income below poverty Asian White Black Hispanic .2036133 .1320873 .2901862 .1368668 1.0492 -0.8748 1.2589 22 22 22 NS NS NS % of owner-occupied housing units Asian White Black Hispanic .5420303 .5774214 .1401865 .3686938 -0.4218 4.2521 1.5417 22 22 22 NS *** NS % with insurance coverage Asian White Black Hispanic .8902573 .8572536 .7859508 .8193099 0.4357 1.1439 1.0537 22 22 22 NS NS NS % with American citizenship Asian Hispanic .4503133 .7412614 -3.9366 22 *** *p<.05, **p<.01, ***p<.001 Degrees of freedom Significance 34 DISCUSSION The goal of this study was to investigate the extent to which Burmese refugees have achieved successful integration into American society. More specifically, it sought to answer the following question: what are the socioeconomic outcomes of Burmese refugees in Neighborhood B, and how do these outcomes compare to those of other racial/ethnic groups? The study results indicate that the socioeconomic status of Burmese refugees generally approximates that of White individuals, while tending to surpass that of Black individuals on average, and Hispanic individuals in some domains. These results suggest that Burmese refugees living in Neighborhood B have successfully integrated into their host society, as defined by the National Academies of Sciences, Engineering, and Medicine (2015), which describes integration as the extent to which immigrants and refugees achieve a similar socioeconomic status as the native-born population. These results are consistent with previous research which found that refugees socioeconomic outcomes tend to improve over time, and they successfully integrate into American society (Capps et al. 2015; Kallick and Mathema 2016; Fix et al. 2017; Evans and Fitzgerald 2017). Nonetheless, it remains uncertain whether this integration can be attributed to the U.S. refugee admissions program (USRAP) alone. As previously discussed, the USRAP presents several limitations that hinder refugees integration. A study that examined the social, economic, political, and educational adaptation patterns of Burmese and Bhutanese Americans found that the overall socioeconomic outcomes of Burmese individuals in the United States tend to be low when compared to the native-born population and other Asian American and Pacific Islander groups (Trieu and Vang 2015). They face significant language and educational barriers that reduce their socioeconomic mobility. To the best of my knowledge, the policies, services, and 35 resources provided by local resettlement agencies are standardized across regions. Therefore, there is no indication that Burmese refugees in Indiana would receive better benefits than those in other states. Furthermore, one major limitation of my study is that it does not account for the time of arrival of the refugees. As a result, it is also uncertain whether the positive integration outcomes observed among Burmese individuals are due to their length of stay in the United States as discussed in previous research (Capps et al. 2015; Kallick and Mathema 2016; Fix et al. 2017; Evans and Fitzgerald 2017). With that being said, a possible factor that could explain the positive socioeconomic outcomes of Burmese refugees in Marion County, Indiana is the strength of the Burmese community in Neighborhood B. A portrait of Neighborhood B Neighborhood B is located in the southern part of the Indianapolis metropolitan area with 19 out of its 23 census tracts situated within Perry township, as shown in Figure 1. Throughout its history, Perry township has undergone significant socioeconomic and demographic changes, evolving from a rural farming community to a predominantly residential area with commercial and industrial development. The post-World War II era saw a surge in population growth which led to a boom in residential construction, with new subdivisions and housing developments being built. The 1990s saw a significant demographic changes due to the Burmese refugees settling in the area. The Chin ethnic group, a Christian minority who has been persecuted due to their religious beliefs in Burma, make up 75% of the Burmese refugees placed in Indianapolis with a majority residing in Perry township (Indy Encyclopedia 2023). This area has become a popular destination for this community due to its affordable cost of living, accessible housing prices, 36 availability of employment opportunities, and abundance of Christian churches (Choi 2016; Indy Encyclopedia 2023). In fact, Perry township has become so attractive to Burmese refugees that many from other parts of the country choose to migrate there. The area has earned the nickname Chindianapolis to reflect the communitys dominant presence (Aye and Chadwick 2018; Salaz and Raymer 2020; Indy Encyclopedia 2023). One major characteristic of Neighborhood B is the dense concentration of Burmese-owned businesses, including restaurants, grocery stores, and markets that cater specifically to the Burmese community, offering traditional foods and ingredients that may not be readily available in mainstream American stores. One such business, Chin Brothers Market, was established by Than Hre, a Burmese Chin refugee who settled in Perry township in 2002. Hre opened the market in 2007 after recognizing the need for traditional food options for the Burmese Chin community (Indy Encyclopedia 2023). The market's success prompted Hre to expand and open Chin Brothers Restaurant and Bakery shortly after (Aye and Chadwick 2018). In addition to food establishments, Neighborhood B has seen the emergence of many other Burmese-owned businesses, including accounting offices, real estate agencies, and barber shops. These businesses are tailored to meet the needs of the Burmese community, with their signage written in Burmese (Salaz and Raymer 2020). Moreover, Neighborhood B has a range of community-based organizations, such as the Indiana Chin Center, which offers English language classes and employment support; and Hope For Tomorrow, which offers U.S. Citizenship Classes, assistance with U.S. citizenship applications, after-school programs, as well as English conversational classes. These organizations have proven invaluable to many Burmese refugees who have settled in the area and speak limited English (Indy Encyclopedia 2023). 37 Another key characteristic of the area is the prevalence of the Burmese culture. Neighborhood B is home to several cultural institutions and community centers that serve as gathering places for the Burmese community, where they can socialize, participate in community events, and celebrate their culture. The local residents have also demonstrated their welcoming attitude towards the Burmese community. In 2016, for instance, a neighbor put up a sign in front of a vacant house in Neighborhood B that read No More Chin, a reference to the Burmese Chin community (Wagner 2016). However, the communitys response was overwhelmingly supportive of the Burmese community. Neighbors protested against the sign and reached out to the Fair Housing Center of Central Indiana to voice their discontent (Wagner 2016). In 2021, a number of churches in Neighborhood B organized solidarity services after the 2021 military coup in Burma to express their support for the Burmese people (Hoefer 2021). Furthermore, local authorities have invested resources and taken initiatives to understand and overcome cultural barriers that might keep the Burmese community isolated from the larger American community. For instance, the Indianapolis Metropolitan Police Department (IMPD) has expanded its Immigrant Outreach Unit to the southside where Neighborhood B is located (Daudelin 2017). The unit regularly reaches out to the Burmese community to offer assistance and organize crash courses on the Indiana police, customized for people who have limited English proficiency and for immigrants and refugees who may not be familiar with the role of American law enforcement (Lewis and Disis 2016; Daudelin 2017). In addition, in 2018, the Southport Police Department in Neighborhood B hired its first Burmese officer with the hopes to bridge the gap between the local community and the rapidly growing Burmese population in the area (Choi 2018). 38 Overall, Neighborhood B has evolved to become a Burmese Chin ethnic enclave with a strong sense of community and social cohesion. The area has played a crucial role in facilitating the development of strong social networks among the Burmese community as well as the local residents. It is worth noting that Neighborhood B is located close to major transportation routes, including Interstate 65 and route 31, which provide easy access to downtown Indianapolis and other parts of the state. This means that the Burmese community can take advantage of resources and opportunities beyond Neighborhood B. The impact of community on Burmese refugee integration This study found that the rate of Burmese refugees who have earned a college degree or higher is similar to those of White, Black, and Hispanic individuals in Neighborhood B. Additionally, Burmese individuals have similar rates of employment, median household income, poverty status, and health coverage as White, Black, and Hispanic individuals in the same area. When it comes to homeownership, Burmese households have a similar rate of homeownership as White and Hispanic households. These similarities could be attributed to the strong sense of community in Neighborhood B, which fosters strong social networks, as described in the previous section. Social networks can play a crucial role in the integration of refugees into their new communities. Strong social networks can provide refugees with access to information, resources, and social support that can help them navigate the challenges of resettlement, navigate the local culture, and adapt to their new environment (Poros 2011). With strong social networks, refugees may have access to information about job opportunities, housing options, health care, and 39 community services that can help them establish themselves in their host society (Poros 2011). They may also receive emotional support and practical assistance from their network members. Furthermore, the presence of various Burmese organizations that primarily serve Burmese individuals in Neighborhood B allow them to access goods and services within their community (Poros 2011). Thus, Burmese refugees can gain employment, seek professional services such as accounting, and fulfill their basic needs without having to learn and navigate American culture or attain English language proficiency. Additionally, the presence of the Burmese American Community Institute (BACI) in Neighborhood B, a non-profit organization founded in 2011 that advocates for the Burmese community both locally and nationally, provides strong institutional support to Burmese individuals in the area. It is worth noting that the study found significant disparities in two socioeconomic indicators. First, Burmese individuals have a significantly lower rate of not completing high school when compared to White and Black individuals. A possible explanation for this disparity is that many adult refugees come from rural backgrounds in Burma and have has limited access to formal education (Trieu and Vang 2015). Furthermore, education is often disrupted for refugees waiting for permanent resettlement in refugee camps. Second, a significantly lower percentage of Burmese individuals have attained American citizenship when compared to Hispanic individuals. This could be due to the limited English proficiency of Burmese refugees, which makes it difficult for them to take the naturalization exam. Although social networks play an important role in helping refugees adjust to life in a new country and navigate the different legal and bureaucratic processes involved in resettlement, ultimately, passing the citizenship exam is an individual process. 40 It is also important to note that the rate of homeownership for Black households is significantly lower than that of Burmese households. This disparity can be attributed to historical and ongoing systemic racism and discrimination against Black individuals. Furthermore, refugees receive financial and social assistance from the U.S. government upon their arrival, a benefit that Black people have historically been denied. Figure 1: Maps of Marion County, Indiana, U.S. Census Bureau 2021 LIMITATIONS AND FUTURE RESEARCH While this study generates valuable insights regarding the integration of Burmese refugees into Neighborhood B, it is important to acknowledge its limitations. Firstly, due to the lack of data on Burmese individuals in the Census Bureau, the Asian population was used as a proxy for the Burmese community. This may have influenced the data as the Asian population in 41 Neighborhood B includes non-refugee populations with typically higher socioeconomic status, such as Malaysians and Indians. Secondly, the data did not capture the period of arrival of the Burmese refugees. It is well-known that first and second-generation immigrants and refugees often have different outcomes, and this study did not account for that. Thirdly, the American Community Survey (ACS) did not include other socioeconomic indicators that could have been used to examine other domains of integration proposed in Ager and Strangs (2008) framework. Lastly, while this study builds on an established integration framework, the definition and experience of successful integration are better understood from the perspective of refugees themselves. Future research could address these limitations and deepen our understanding of the concept of refugee integration and its implications for policy and practice. For example, collecting primary data can ensure that all relevant indicators of integration are examined, and personal characteristics of refugees are captured in the analyses. Furthermore, future studies could explore social ties and community connection in Neighborhood B as well as study the community as an ethnic enclave to further understand if and how neighborhood dynamics might offer benefits and support to the residents. Despite these limitations, this study represents an essential contribution to the existing literature on refugee integration. Firstly, it highlights the importance of examining the experience of integration in specific contexts. Secondly, it highlights the importance of social network building as a key factor in facilitating integration. Lastly, it paints a positive picture of Burmese refugees who found refuge in the United States. This study shows that, despite the challenges refugees face before and beyond resettlement, their journey can lead to favorable outcomes for both them and the host society with the appropriate support. 42 REFERENCES Agbnyiga, Debrenna Lafa, Salamatu Barrie, Valentina Djelaj, and Stepanie J. Nawyn. 2012. Expanding Our Community: Independent and Interdependent Factors Impacting Refugee Successful Community Resettlement. Advances in Social Work 13(2):30624. doi: 10.18060/1956. Ager, A., and A. Strang. 2008. Understanding Integration: A Conceptual Framework. 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