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Disability disclosure: the lived experiences of medical school students with disabilities

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Disability disclosure: the lived experiences of medical school students with disabilities

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Content Disability Disclosure: The Lived Experiences of Medical School Students with Disabilities by Stacey M. Hearn A Dissertation Presented to the FACULTY OF THE USC ROSSIER SCHOOL OF EDUCATION UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF EDUCATION December 2024 Copyright 2022 Stacey M. Hearn DISABILITY DISCLOSURE OF MSSD 2 Acknowledgements I am eternally grateful to so many individuals that have assisted in my educational journey. First and foremost, thank you to my nine participants. Without you and the vulnerable conversations you were willing to share with me, this study would not have been possible. Your time and contributions are deeply valued, and I know your communities are better with your medical involvement. I wish each of you the very best in your educational and vocational endeavors. Thank you to my incredible colleagues of Cohort 16. The support, encouragement, and endless laughter were treasured throughout every component of the program. Your willingness to share your experiences and challenge everyone made our time together invaluable. Amanda, Devon, Eli, Maria, Sue, David, and Lyn, I hold you each dear in my heart. You are all incredible and I have learned so much from you. I am forever thankful to you and the friendships we carry forward. A special thank you to Dr. Datta with whom we started this journey. Your knowledge and fun demeanor drew so many of us in quickly. The continued guidance and support you shared throughout are forever appreciated. Dr. Courtney Malloy, you offered incredible guidance and suggestions on my study and your insights were invaluable. Thank you to my dissertation committee. Dr. Krop, a sincere thank you for joining my committee so far into the process. Your willingness to jump in, understand, and provide feedback was beyond appreciated. Dr. Debbie Jih, your ongoing behind the scenes support was instrumental in my determination to finish. I will always be grateful for your unique perspectives and feedback in refining and improving my study. Finally, a huge thank you to my dissertation chair, Dr. Paula M. Carbone. I cannot thank you enough for your willingness to step in, when my DISABILITY DISCLOSURE OF MSSD 3 prior chair left the university; you will forever be appreciated. Your unwavering belief in my topic and in me along with your generous feedback and support over multiple years was truly a gift. Your ability to always meet me where I was at allowed me room to think through and improve my topic and writing over time. I am forever grateful for your assistance in getting me to the finish line. Thank you to my colleagues at the University of Southern California who encouraged me to begin the program and to those who became my cheerleaders during every difficult moment. Lisa, your eagerness for me to start the program and consistent support throughout was so appreciated. To my department, you heard every success and every gripe. I truly appreciate your support and ongoing encouragement. And to Christine Street, my supervisor, who always believed I would complete the program even when I was unsure, who allowed me the flexibility in my schedule to attend classes, and who consistently encouraged me by speaking in terms of “when” I complete, I am forever grateful for the opportunity and for your never-ending support. Finally, and most importantly, to the ones who truly made this degree possible my husband Justin and son Silas. Without you and your consistent support this degree would not have been possible. You encouraged my crazy idea to start a doctoral program, you picked up the slack at home and with Silas while I attended class and then later every weekend while I wrote for hours on end. I promise my formal education will conclude with this degree and we can go off and enjoy every weekend moving forward! I love you and I am so grateful to reclaim the time with you and Silas. To Silas, you have only known life with me working and pursuing this degree. Yet, in these few years you have taught me how to choose balance and enjoy the little moments even during times of increased stress. I love you endlessly and can’t wait to spend so much more time with you. DISABILITY DISCLOSURE OF MSSD 4 Table of Contents (Single-Spaced) Acknowledgements 2 Table of Contents 4 List of Tables 6 List of Figures 7 Abstract 8 CHAPTER ONE: INTRODUCTION TO THE STUDY 9 Context and Background of the Problem 9 Purpose of the Project and Research Questions 10 Importance of the Study 10 Overview of Theoretical Framework 12 Definitions 14 First Word/Term 14 Organization of the Dissertation 15 CHAPTER TWO: LITERATURE REVIEW 17 Context of Disability in Medical Schools 17 Defining and Conceptualizing Disability 18 Overview of Disability Law and Implications 21 Medical Schools 23 Students with Disabilities in Medical School 24 Significance of Full Inclusion in Society and Medical School 25 Barriers to Disclosure of Disabilities in Medical School Education 27 Medical Culture 27 Medical Education Culture 29 Environmental Barriers 30 Climate of Medical Schools 34 Conceptual Framework 38 Summary 40 CHAPTER THREE: METHODOLOGY 42 Research Questions 42 Overview of Design 42 Research Site and Participants 44 Site 44 Participants 45 Instrumentation and Data Collection 49 Data Analysis 52 Credibility and Trustworthiness 53 The Researcher 55Ethics 56Error! Bookmark not defined.CHAPTER FOUR: FINDINGS 59 Participants 60 Research Question 1: [What if any systemic barriers exist that impact the willingness of students with disabilities in allopathic medical schools to disclose disability status?] 65 Research Question 2: [What internal factors, if any, impact the willingness of allopathic medical school students with disabilities to disclose disability status??] 75 DISABILITY DISCLOSURE OF MSSD 5 Summary 82 CHAPTER FIVE: RECOMMENDATIONS 83 Discussion of Findings 83 Recommendations for Practice 91 Recommendation 1: [Reduce disability bias through disability diversity training and education of university personnel] 91 Recommendation 2: [Establish a comprehensive DEI program that includes disability] 93 Recommendation 3: [Reduce student’s negative perceptions related to requirements of disability disclosure and accommodation processes through transparent information sharing] 95 Limitations and Delimitations 97 Recommendations for Future Research 100 Conclusion 101 References 103 Appendix A: Qualtrics Recruitment Survey 119 Appendix B: Email to Qualtrics Recruitment Survey Respondents 123 Appendix C: Information Sheet for Non-Medical Research 125 Appendix D: Social Media Posting Requesting Survey Participants 128 Appendix E: Thank You Email: Participation Reached 130 Appendix F: Revised Survey Including Demographic Information 131 Appendix G: Email Request for Distribution of Recruitment Email/Survey 136 Appendix H: Recruitment Email for Medical Student Body 137 Appendix I: Interview Protocol 138 DISABILITY DISCLOSURE OF MSSD 6 List of Tables Table 1: Demographic Characteristics of Study Participants 59 Table 2: Barriers and Individual Assets that May Impact Disability Disclosure Decisions 61 DISABILITY DISCLOSURE OF MSSD 7 List of Figures Figure 1: Albert Bandura's SCT representing reciprocal determinism 13 Figure 2: Conceptual Framework incorporating factors that impact MSSD’s disability disclosure and seeking of academic accommodations and support services 40 DISABILITY DISCLOSURE OF MSSD 8 Abstract The purpose of this qualitative study was to examine the willingness of allopathic medical school students with disabilities to disclose disability status based on their perceptions of the medical school environment and the behaviors of those within the environment. The conceptual framework of social cognitive theory allowed exploration of the reciprocal interaction of environmental barriers and the behavioral barriers and factors that influence disability disclosure decisions of medical school students with disabilities. A qualitative study was constructed utilizing semi-structured one-on-one interviews following the completion of a recruitment survey. The target population of current allopathic medical school students with invisible disabilities who had not disclosed was later opened to current allopathic medical school students with invisible disabilities regardless of disclosure status. A total of 56 recruitment surveys were completed culminating in nine interviews. The findings revealed three themes between the two research questions: 1) psychological safety with sub themes of expectations, contemplated congruence with authority, systemic messaging and power dynamics, 2) perceptions of available support with sub themes of notifications and policy, process, and procedures, and 3) ontology of social reality with sub themes of trust, help-seeking behaviors, stigma, and discrimination. Three evidence-based recommendations to address the findings included: 1) reducing disability bias through disability diversity training and education of university personnel, 2) establish a comprehensive DEI program that includes disability, and 3) reduce student’s negative perceptions related to requirements of disability disclosure and accommodation processes through transparent information sharing. DISABILITY DISCLOSURE OF MSSD 9 CHAPTER ONE: INTRODUCTION TO THE STUDY The passing of disability legislation in the United States has led to growing support services for students with disabilities in post-secondary and tertiary education contributing to a steady increase in enrollment (Yissel et al., 2016). For students with disabilities, receiving accommodations and access to support services is integral in their academic success as it increases their ability to be academically successful, improves retention, enhances their physical and psychological health along with improvements in social support, and increases their likelihood to persist in their education (Lindsey, et al., 2018; Mamboleo, 2020; Newman et al., 2019; Yssel et al., 2019). Yet access to support services and accommodations at the collegiate level, including medical schools, requires the important step of self-disclosure which can become a barrier (Magnus & Tossebro, 2014). Context and Background of the Problem This dissertation addresses the problem of the reluctance of medical school students to disclose disability status (Dyrbye et al., 2015; Meeks et al., 2021; Meeks & Jain, 2018). Enrollment in medical schools has increased by over 29% since 2002-2003 (Orlowski et al., 2018) with an estimated 1,500 medical school students disclosing a disability (Meeks et al., 2019). A quantitative study reported an increase of student disclosures from 2.7% to 4.6% with a confidence interval of 95% between 2016 and 2019 (Meeks et al., 2019). However, despite the positive strides, the percentage of disability disclosures remains low compared to undergraduate disclosures, resting between 11% to 15% (U.S. Department of Education, 2018). Furthermore, the reported lived experience of medical school students with disabilities reports organizational policies, procedures, and an encompassing culture that negatively impacts student’s willingness to disclose, demonstrating that disability disclosures continue to be a problem in medical DISABILITY DISCLOSURE OF MSSD 10 schools. Although there has been an increase in disclosures, researchers remain uncertain of the true level of representation of students with disabilities in medical programs and call for further studies assessing the culture, policies, procedures, and practices that impact a student’s willingness to disclose disability status (Meeks et al., 2019). Purpose of the Project and Research Questions The purpose of this study is to examine the willingness of allopathic medical school students with disabilities to disclose disability status based on their perceptions of the medical school environment and the behaviors of those in the environment. Although there is growing literature on the experiences of medical school students with disabilities (MSSD), few focus on MSSD’s perceptions of the environment and behaviors of those within the environment as dynamic barriers in deciding whether or not to disclose disability status. Uncovering, what if any, environmental and behavioral barriers exist within medical schools that impact the willingness of MSSD’s to disclose allows for understanding how to address aspects of disability diversity and inclusion at a systemic level. The following research questions guide this research. ● RQ1: What, if any, systemic barriers (i.e. technical standards, undifferentiated programs, processes/procedures, etc.) exist that impact the willingness of students with disabilities in allopathic medical schools to disclose disability status? ● RQ2: What internal factors, if any, (i.e. stigma, negative attitudes, culture, climate etc.) impact the willingness of allopathic medical school students with disabilities to disclose disability status? Importance of the Study Access to healthcare in the United States of America can be challenging for many individuals. Despite civil rights law, individuals with disabilities continue to face increased DISABILITY DISCLOSURE OF MSSD 11 disparate treatment in accessing medical care such as loss of health care providers, decreased autonomy in decision making, low trust in health care systems, and feeling degraded by medical practitioners (Ordway et al., 2019). Moreover, a mixed method study utilizing surveys and focus groups found that health care worker’s knowledge of disabilities and a provider’s willingness to provide additional support services are key factors in individuals with disabilities accessing medical care. Individuals who participated in the focus group stated they believed their health care providers needed additional training in order to better serve the disabled community through person-centered health care delivery and a better understanding of disabilities which would improve overall access to health care (DeLisa & Thomas, 2004; McKee, et al., 2016; Meeks, et al., 2018; Ordway et al., 2019; & World Health Organization & The World Bank., 2011). The United States Census Bureau (2019) reported over 61 million individuals with disabilities in the United States, accordingly the need for medical professionals who understand disabilities and provide culturally competent care to individuals with disabilities is paramount, which begins with medical school training. The problem of medical school students with disabilities not disclosing is important to solve as accommodations allow equal access and opportunity to become medical school graduates and practicing physicians. The Americans with Disabilities Act and the Rehabilitation Act intended to eliminate discriminatory, exclusionary, and retaliatory behaviors towards qualified persons with disabilities (PWD) in any activity or program (Introduction to the ADA, n.d. & Section 504, Rehabilitation Act of 1973 | U.S. Department of Labor., n.d.). Despite the law, medical school environments, negative attitudes, and the stigma related to disability status continue to act as deterrents (Stergiopoulos, et al., 2018). First year students show empathy for PWD however, the views espoused in medical culture show that upon graduation students have DISABILITY DISCLOSURE OF MSSD 12 developed negative perceptions of PWD (Meeks, et al., 2018). When peers receive intentional education on disabilities and are exposed to medical students with disabilities during training, student’s attitudes and behaviors towards PWD improve (Meeks, et al., 2018; Sarimento et al., 2016). Students and physicians with disabilities bring a distinct perspective to their studies and practice (DeLisa, 2005; Kezar, et al., 2019) and display an increased understanding of their patients. The benefit of physicians with disabilities are ample as they often return to serve patients within their communities, spend more time, show more empathy, and portray a greater awareness on the effects of disability in daily living (DeLisa & Thomas, 2004; Mckee, et al., 2016; & Meeks, et al., 2018). Furthermore, physicians with disabilities include the patient in decision making, provide better communication, offer appropriate accommodations, provide increased clinical screening and health advice, and offer more culturally competent care (DeLisa & Thomas, 2004; McKee, et al., 2016; Meeks, et al., 2018; World Health Organization & The World Bank, 2011). Cultural diversity among physicians improves care for underrepresented populations such as PWD and patients often prefer those that are similar to them (Zazove, et.al, 2016). With a swelling population of PWD it is imperative we create equal access to opportunity for PWD in medical schools to improve overall patient care throughout the nation. Overview of Theoretical Framework and Methodology This study will be guided by Bandura’s social cognitive theory (SCT) with an underpinning of Critical Disability Theory (CDT) within the literature to aid in the analysis of the findings. SCT uses reciprocal causality to explain the interaction of personal factors such as one’s cognition, behavioral patterns, and environmental interactions that show a bidirectional influence (Bandura, 1999). Bandura believes that individuals learn not only through direct experience, but also through observation, imitation, and modeling (Bandura, 2019) in imposed DISABILITY DISCLOSURE OF MSSD 13 environments, selected environments, and constructed environments (Bandura 1999). As seen in Figure 1 below, Bandura (1977) believed that most learning occurs in the form of observation of others in a social environment, and the behavior of individuals is a cognitive process. The interaction of individuals, behaviors, and the environment creates learning, whether intentional or not (Schultz & Schultz, 2009). A constructivist perspective in research finds that reality is socially constructed, and multiple realities can co-exist (Shannon-Baker, 2023 Steedman, 1991) impacting one’s view of social norms, socio-political constructs, and social conditions that create real or perceived power dynamics (Mackie et al., 2015; Popitz, 2017; Sunstein, 1996) that impact the willingness of individuals to perform in a particular manner within specific environments. The perpetual cyclical dynamics of environmental barriers and behavioral barriers and factors impacting the individual factors portrays a system that is interconnected and interdependent. Figure 1: Albert Bandura’s SCT representing reciprocal determinism DISABILITY DISCLOSURE OF MSSD 14 Definitions The fields of medical school education and disability services use specific language. This dissertation will use the following definitions of terms. First Word/Term a) Technical Standards (TS) are the nonacademic criteria used for admission, continuation, and graduation of students in medical schools. Functional TS’s focus on the outcome. Organic TS’s focus on how one reaches the outcome through utilization of senses (Meeks & Jain, 2018). b) Allopathic medical schools offer medical degrees and are science-based practices focused on diagnosing and treating medical conditions (DeLisa & Thomas, 2004). c) A disability is any physical or mental health impairment that substantially limits one or more life activities including education and activities associated with education (Introduction to the ADA, n.d.). d) Faculty are responsible for teaching curriculum within a classroom (Carey et al., 2004). e) Accommodations are academic adjustments, technology, or aids that allow for equal access to the curriculum or processes (Carey et al., 2004). f) Support services are all encompassing. Some aspects of support services include access to mental/physical health care, wellness/well-being initiatives, testing services, and effective communication access (Carey et al., 2004). g) Disclosing is a process by which the student provides notice to the university about disability status and the need for accommodations or support services for equitable access to the curriculum (Carey et al, 2014). DISABILITY DISCLOSURE OF MSSD 15 h) The medical model of disability views disability as an impairment to overcome (Sarmiento et al., 2016) i) OSCE is the Observed Structured Clinical Examination all medical students undertake in years one and two of their education as well as during their clinical rotations. OSCE’s require students to demonstrate clinical skills in a standardized medical scenario that is observed by medical school faculty as a part of the medical school’s accreditation through the LCME. j) Able-bodied is a term used to describe an individual who does not identify as having a disability (physical or cognitive). Organization of the Dissertation This study is organized into five chapters. Chapter one provides a discussion of the willingness of medical school students with disabilities to disclose disability status in medical school settings. The reader is introduced to the background and context of the problem, the theoretical framework, and key terminology to be used throughout the dissertation. Current literature relevant to the study is reviewed in Chapter Two. Chapter Three outlines the methodology related to the selection of participants, data collection, and analysis. Chapter Four reviews, assesses, and analyzes the collected data and results. Chapter Five reflects on the collected data in relation to the literature and provides potential solutions to improve the willingness of students with disabilities in medical school programs to disclose disability status. DISABILITY DISCLOSURE OF MSSD 16 CHAPTER TWO: LITERATURE REVIEW The purpose of this study is to explore the barriers and factors that impact medical school students with disabilities (MSSDs) disclosure of disability status during their medical education. A review of the literature and relevant research along with the conceptual framework will be provided in this chapter. The review of literature will include placing disability in context through defining disability and providing a small sample of models of disability through which to consider the problem of practice. An overview of disability legislation and its implications on society as well as an overview of the culture of the medical field and of medical school culture will follow as it might impact disclosure. Finally, the literature will examine the attitude and stigma associated with disability status and personal factors that impact the decision of MSSDs from disclosing disability status and seeking academic support services. The perceptions of MSSDs of their environment and social barriers and personal internal factors that connect to learning in a social context provides a lens through which to understand the lived experience of MSSDs and their decision to disclose disability status. Subsequent literature related to the reciprocal interaction of behavior, environment, and the cognition of MSSDs will explore how observational learning, reinforcements, and self-efficacy play a role in the level of agency an individual feels when deciding to disclose disability status during their medical school tenure. Context of Disability in Medical Schools The literature related to the disclosure of disability status is growing, however, gaps in the research exist. The number of students in medical schools with disabilities is difficult to determine due to federal law and student’s unwillingness to discuss disability status (Meeks et al., 2018; Meeks & Jain, 2018; Stergiopoulos et al., 2018; Waliany, 2016). Much of the current research focuses on the lived experiences of MSSD’s who elected to disclose disability status in DISABILITY DISCLOSURE OF MSSD 17 allopathic medical schools. The exclusion of osteopathic medical schools and lack of research of MSSDs in the clinical components of the curriculum add to the uncertainty of how many medical school students have disabling conditions. Waliany (2016) states that administrators of medical schools are aware of less than 1% of students who have disabilities in their programs. MSSDs who elect to remain hidden do so after considerable thought and therefore are typically not included in the research regarding barriers to disclosure, identification of effective accommodations and support, as well as the overall lived experience of people with disabilities in clinical education, residency, and subsequent employment (Meeks & Jan, 2018). Defining and Conceptualizing Disability Criterion for defining the term disability can vary based on culture, context, and era. Since 1990 in the United States of America, disability has been defined as a “(a) physical or mental impairment that substantially limits one or more major life activities, (b) an individual with a record of such an impairment, or (c) being regarded as having such an impairment” (Americans with Disabilities Act of 1990). Expanding on the Americans with Disabilities Act (ADA), Congress, in 2008, amended the act allowing for broader coverage by including major bodily functions in addition to impairments to major life activities. Further impacting how disability is viewed are the models created by society. The frameworks created minimize or highlight specific aspects of disability and provide the lens through which society views individuals with disabilities. Although numerous models exist, the most prominent models include the medical model, the social model, the identity model, and more recently the representation of multiple models in Critical Disability Theory as it connects to Critical Race Theory. DISABILITY DISCLOSURE OF MSSD 18 The (bio)medical model, also considered the traditional model used to view disability, emphasizes the etiology of an individual’s disabling condition and encapsulates a person through their diagnosis (Dirth & Branscombe, 2017). Moreover, the medical model provides a prognosis and a rehabilitation plan to correct or alleviate symptoms of the disability. Shyman (2016) states a number of issues exist with the medical model, including deeming individuals with disabilities as abnormal necessitating intervention to attain what society views as normal functioning. The focus on each individual’s etiology of disability can unintentionally be discriminatory in nature as it places the idea of disabilities into the realm of medical pathology and dehumanizes individuals with disabilities (Dirth & Branscombe, 2017; Fisher & Goodley, 2007; Shyman, 2016). While the medical model emphasizes disability as a problem related to the flaws inherent in the individual, the social model externalizes disability placing the disabling features on the environment in which the individual resides (Dirth & Branscombe, 2017). The social model views individuals with disabilities as a minority group marginalized and discriminated against due to environmental and attitudinal barriers that prevent those with disabilities from full inclusion into society (Retief & Letsosa, 2018). In this model, Dearth and Branscombe (2017), view society as the defect stating the culture creates exclusionary policies and environments that prevent equitable access. Although the social model of disability gained significant traction in the 1970’s and 1980’s due to the publication of the Union of the Physically Impaired Against Segregation which focused on basic human rights for individuals with disabilities (Oliver, 2004), critics felt it did not take into account the wide swath of how individuals with disabilities identified themselves. Both the social model and the identity model view disability as socially constructed and DISABILITY DISCLOSURE OF MSSD 19 exacerbated by the environment; however, the identity model views disability as a positive identity including exclusive membership among those who are disabled (Forber-Pratt & Zape, 2017; Retief & Letsosa, 2017). Critical Disability Theory Emerging from multiple models of disability, critical disability theory (CDT) builds upon prior models of disability through the combination of three principles, 1) disability is not an impairment, as the medical model suggests, but instead a construct developed by society, 2) reciprocal determinism exists between the individuals impairment, how the individuals view their impairment, and the environment in which they live, and 3) that individuals suffer disadvantages economically, physically, and socially due to their disability status (Hosking, 2008). Disability rights advocates have publicly challenged the disparities suffered by individuals with disabilities, leading to the recognition that laws are needed to overcome the societal barriers experienced. Critical Race Theory as it Relates to Disability Though separate and distinct from Critical Disability Theory and other models utilized to understand disability, Critical Race Theory (CRT) does provide a further understanding of the ontology of social reality. CRT describes race as a socially constructed difference that was created, perpetrated, and cultivated by society (Gillborne, 2015). Similar to CDT, CRT presents differently in disparate situations displayed in a range of stereotypes manifesting in both overt and covert acts (Gillborne, 2015). It is the instinctual and complex nature of the connections in our societal structures, interpersonal relationships, perceived relations between individuals, and the individual's relationship with objects within the environment that conscious and unconscious decisions are made that impact the ontology of our social reality (Andina, 2016). DISABILITY DISCLOSURE OF MSSD 20 The development of our social reality is further advanced through systemic messaging in our institutions. Niederepee et al. (2003) describes a history of marginalized populations facing the impact of societal messages that lead to policies that expand inequities. Furthermore, the researchers found that communication including the shared stories of the lived experiences of marginalized populations can promote collective actions that accelerate equity. The shared stories allow marginalized voices to fill in the gaps inherited by the represented majority’s culture thereby reconstructing the dominant cultural norms and values (Taylor, 2003). Overview of Disability Law and Implications Individuals with disabilities have a long history of suffering from bias, assumptions, stereotypes, stigmatization, and marginalization (Schriner, 2001; Series, 2017). Brown (2017) portrays decades of attempts to hide and silence individuals with disabilities as early as the 1500s. Individuals with disabilities without family or friends to take care of them historically found themselves in community supported institutions due to the public’s aversions to their conditions (Brown, 2017; Schweik, 2009). Often viewed as deviants, individuals with disabilities faced extreme oppression and discrimination as society sought to isolate through segregated schools and through the refusal of health care (Albrecht et al., 2001; Brown, 2017; Schweik, 2009). Political unrest around the social control of individuals with disabilities reached a crescendo in the 1970’s as disability rights advocates began to lobby congress and marched on Washington, D.C. leading to the passing of the 1973 Rehabilitation Act (Fleishcher & Freida, 2001; Vaughn, 2003). The Rehabilitation Act provided legal grounds to ensure individuals with disabilities had access to rehabilitation services and programs including job placement and skills enhancement as well as providing anti-discrimination protections for qualified individuals with disabilities (U.S. Equal Employment Opportunity Commission, n.d.). Section 504 expanded the DISABILITY DISCLOSURE OF MSSD 21 Rehabilitation Act to include that no qualified individuals with disabilities could be excluded or denied access to benefits nor would discrimination be allowed in any program that received federal assistance (Disability Rights Section, 2020). Recognition of the need for further civil rights protections for individuals with disabilities led to the Americans with Disabilities Act (ADA) in 1990. The ADA prohibited discrimination in employment, local, State, and Federal government entities, public accommodations, commercial facilities, transportation, and areas of telecommunications. The five titles of the ADA, amended in 2008, expanded the definition of disability, allowing individuals with disabilities added protection under the law (U.S. Equal Employment Opportunity Commission, 2008). The implications of passing disability rights legislation, such as the Rehabilitation Act and the Americans with Disabilities Act, was an increased opportunity for integration into all aspects of society including both the workforce and the education system (Burns & Gordon, 2010; Picker, 1998). Furthermore, individuals with disabilities benefit from an improved quality of life and self-perception through their participation in employment and education (Carty, et al, 2021; Kohli & Atencio, 2021). Over 61 million individuals in the States have a diagnosed disability with one in four adults impacted by disability status (The Center for Disease Control and Prevention, 2018) and the ADA provided clear guidance and a consistent way to enforce standards of equity and anti-discrimination (Watson & Hutchens, 2005). The ability to fully participate in the education system and in gainful employment can lead to significant benefits for both individuals with disabilities and their communities. DISABILITY DISCLOSURE OF MSSD 22 Medical Schools In 1910, medical education in the United States underwent a transformation following the publication of the Flexner Report (Duffy, 2011). Today’s medical school system continues to rely on the scientific, research-based structure of the biomedical model established by Flexner and his colleagues with only slight enhancements to the curriculum (Duffy, 2011; Sarmiento et al., 2016). The Liaison Committee on Medical Education (LCME), an accrediting body, regularly reviews standards and elements deemed critical to the education of medical school students and aids in the programmatic improvements of medical education (Association of American Medical Colleges, 2021; LCME, 2011). Furthermore, the LCME (2011) requires medical school graduates to demonstrate specific professional competencies and technical standards to progress into the proceeding stages of medical training, from lecture to clinical rotations, and is often tied to medical school students licensing. With 172 allopathic medical schools and an additional 37 osteopathic medical schools in the States (American Association of Colleges of Osteopathic Medicine, 2021; American Medical Association, 2022), acceptance to medical schools is competitive. Typical graduation rates range from 82% to 96% (American Medical Association, 2018; Clark, January 7, 2021). However, with only 2.7% of matriculating students disclosing disability status (Meeks et al., 2019) and low response rates in research regarding disability disclosures it is difficult to track graduation rates of MSSD’s. One survey of 86 schools, including 83,327 students, showed approximately 42% of the medical students had disabilities upon graduation (Eickmeyer et al., 2012).. A retrospective descriptive study looking at medical school attrition over a ten-year period found social isolation, academic struggles, decelerated curriculums, low grade point averages (GPA), and failing at DISABILITY DISCLOSURE OF MSSD 23 least one basic science course in the first year were leading indicators of potential dropouts (Maher et al., 2013; Ward & Kaimen, 2004). Students with disabilities in medical school Medical school students show a reluctance to disclose disability status (Dyrbye et al., 2015; Meeks et al., 2021; Meeks & Jain, 2018). There are an estimated 1,500 medical school students disclosing a disability (Meeks et al., 2019). Despite the positive increase of student disclosures from 2.7% to 4.6%, in a quantitative study by Meeks et al. (2019), the percentage of disability disclosures remains low. Reasons for low disclosure rates in the study include concerns with medical and medical school culture along with attitudes and stigma as potential barriers to disclosure. Current literature has acknowledged difficulty in understanding the actual numbers of students with disabilities in medical school education (Jain, 2020; Meeks et al., 2019) as researchers have historically explored the lived experience of the disclosure process among MSSDs who elected to disclose during the traditional classroom components of the curriculum. Rosenbraugh (2008) states that some medical school students may be unaware of their disability status and only notice an issue once the rapid pace of medical school pushes the boundaries of prior sufficient compensatory techniques. Other students may have worsening preexisting conditions or acquired disability status during medical school. The 2017 Disability Statistics Annual Report found that 51% of individuals with disabilities in the U.S. were between the ages of 18 to 64 (Kraus et al., 2018). The rate of acquiring mental health conditions including psychological distress, burnout, and mental illness is much higher than the general population for physicians and students in medical education (Auerbach et al., 2016; LenaresSolomon et al., 2019; Rumeysa et al., 2020; Ward & Outram, 2014; Watkins et al., 2012). The increase in prevalence among those currently practicing in the field of medicine and those DISABILITY DISCLOSURE OF MSSD 24 studying supports the research that disability disclosure in medical schools is lower than expected. Significance of Full Integration in Society and Medical School Institutions within society aid in the identity development of its members (Simplican et al., 2015; Werner & Hochman, 2018). Employment and education offer two avenues towards full inclusion in society and allows individuals with disabilities to engage in the social benefits that each carry (Wehman, 2011). The ability to find acceptance within a social network, to give and receive support, to participate in one's community, and develop social capital add to the feeling of belonging (Simplican et al., 2015). Werner and Hochman (2018) found improvement in both self-esteem and self-efficacy along with increased psychological well-being for individuals who participate in roles that are valued in society, all of which help build a positive identity. Additionally, the ability of individuals with disabilities to add to society and to specific fields such as medicine provides an opportunity for self-fulfillment. As described in chapter one, physicians with disabilities often return to their communities providing their patients with increased empathy, heightened awareness of the effects of disability on patients, and typically spend more time with patients during each visit (DeLisa & Thomas, 2004; McKee et al., 2016; Meeks et al., 2018). The opportunity to give back begins long before becoming a medical doctor as students with disabilities often improve the work and attitudes of their peers as they bring a distinct perspective to their education (Meeks et al., 2018; Sarimento et al., 2016). In addition to the personal fulfillment of individuals with disabilities, it is understood that economic mobility is strongly tied to the earning of a college degree (American Medical Association, 2018; Association of Public and Land-Grant Universities, 2020; Baum & Steele, 2017; Carnevale et al., 2009). Estimated lifetime earnings generally increase by level of DISABILITY DISCLOSURE OF MSSD 25 educational attainment (Kim et al., 2015) with individuals holding advanced degrees showing measurable differences in lifetime earnings. Recipients of doctoral degrees tend to earn an estimated 63% more than those with a bachelors or masters (Baum & Steele, 2017). Furthermore, individuals earning a professional degree such as a medical degree could have lifetime earnings twice as high as those with other tertiary degrees. Hertz (2006) analyzed a dataset of over 4,004 children in a panel study of Income Dynamics to aid in understanding economic mobility in the States and found that although lifetime earnings vary by degree type, individuals with tertiary education typically generated an income that increased by 8.3% annually. The American Medical Association (2018) found further benefits to medical degree attainment in that physicians generate a significant economic impact in the communities in which they serve. With clear economic benefits to earning a tertiary degree, particularly a medical degree, the importance of making education accessible to individuals with disabilities is imperative. Despite an estimated 29% increase in medical school enrollment since 2002-2003 (Orlowski et al., 2018), only around 1,500 medical students, or 2.7%, disclose disability status (Meeks et al., 2019) compared to the estimated 5% to 12% of graduate students with disabilities (Dyrbye et al., 2015; Lizotte & Simplician, 2017; Meeks & Jain, 2018); making the disclosure of disability status lower than expected for medical school students with disabilities (MSSD) (McKee et al., 2016; Meeks et al., 2020). An understanding of the benefits of disclosure is improving disclosure rates in medical schools. A 2019 quantitative study of 140 allopathic medical schools, showed the disclosure rates in medical schools increased by 69% between 2016 to 2019, yet the number of individuals with disabilities in medical schools remains underrepresented (Dyrbye et al., 2015; Jain, 2020; DISABILITY DISCLOSURE OF MSSD 26 Mamboleo et al., 2020; Meeks et al., 2020; Meeks & Jain, 2018; Stergiopoulos et al., 2018). MSSD’s who elect to disclose disability status find equitable ability to access their learning of content as well as enhanced physical and psychological health, improved persistence and academic performance, increased retention rates, and a sense of belonging (Dietsche, 2012; Lindsay et al., 2018; Stergiopoulos et al., 2018). Barriers and Factors to Disclosure of Disabilities in Medical School Education For the purpose of this study, the term disability is defined as a physical or mental impairment that substantially limits one or more major life activities. Furthermore, this study will include only invisible disabilities, or those that are not readily identifiable without a disclosure of disability status. Individuals with disabilities may face barriers and factors that impede their access to one or more major life activities such as education. This study defines barriers as the environmental and behavioral conditions that obstruct full and equitable access to students’ medical education. Factors are defined as the individual cognitive and behavioral factors of medical school students such as thought patterns and perceptions that impact the full and equitable access to their medical education. As barriers and factors overlap and can be difficult to clearly delineate, both are addressed in this section. A description of the culture of the medical field leads to an understanding of the culture of medical education. Medical education is divided into structural barriers as well as climate barriers and factors, providing a thorough description of environmental barriers, behavioral barriers and factors, and individual factors as constructs that impact a MSSDs willingness to disclose disability status. Medical Culture Smith (2015) stated that medical culture can be an elusive concept, ranging from benevolence to elitism and power dynamics that disadvantage those who do not represent the DISABILITY DISCLOSURE OF MSSD 27 stereotype of a physician. Moreover, the influence of the unstated norms and expectations have a broad influence over both those in the field and those entering the field of medicine. The medical field historically relies on impartial science leading to a truth only mentality that is difficult to change (Taylor, 2003). However, Michalska-Stein (2019) states that culture exists based on the actions and thoughts of the individuals that make up the field. Furthermore, the culture of medicine is constantly evolving and individuals within the field are not merely a product or conduit of the field but in fact are co-creators of the culture. The concept of cultural competence as an endpoint, conflicts with the idea that culture is dynamic and complex, requiring constant creation, navigation, and revision (Erez & Gati, 2004; Hixon, 2003; Michalska-Stein, 2019). The belief that culture is impacted by individuals and individuals by the culture (Boyd & Richerson, 1983; Erez & Gati, 2004) portrays culture as a way of life and perpetual learning including the conscious and unconscious beliefs, values, expectations, rules, attitudes, roles, and consequences of behaviors of both the individual and the field or organization (Michalska-Stein, 2019; Taylor, 2003). Ward (2016) states the medical field is typically viewed as stressful (Ward, 2016). The field of medicine is characterized as toxic due to chronic stressors including but not limited to long hours including shift work, bullying, conflicts between work and family life, the need to be a high producer in both the clinic and in research, expectations of extreme commitment to the work, excessive workloads, significant patient loads, the need to practice independently and with no emotion, unrealistic expectations of patients and supervisors, and the constant demand for perfectionism (Stein, 2018; Ward, 2016; Westring et al., 2014). Further exacerbating the daily stressors of those in the medical field is society itself (Stein, 2018). The potential of malpractice litigation, the degradation of trust in the medical field over the past two decades, and a lack of DISABILITY DISCLOSURE OF MSSD 28 resources along with inadequate logistical support for physicians (Rumeysa et al., 2020; Stein, 2018) add to a culture of us and them further separating those in the medical field from their patients. Additionally, Burgess et al. (2020) finds a lack of humility exists in mass with physicians along with an inability to honestly self-assess in order to improve, impacting the culture of medicine as it requires not only competence but confidence. The indoctrination to this culture combines the demands for perfection of all practitioners while perpetuating stressful work environments with few resources begins during medical education. The cyclical nature is preserved through the education of medical students as educators continue to create stressful environments, extreme expectations, perfectionism, and shame when mistakes occur (Burgess et al., 2020; Rumeysa et al., 2020; Ward, 2016; Westering et al., 2014). Medical Education Culture Values are typically transferred through social learning processes of modeling and observation (Bandura,1977; Erez & Gati, 2004; Islamy et al., 2020). The purpose of education as an organization is to manage and transfer knowledge in an environment over a period (Erez & Gati, 2004). Medical schools also aim to teach problem solving in real-time with an end goal of producing knowledgeable, skilled, and competent physicians to service their communities in a culturally competent manner (Swanwick, 2018; Taylor, 2003). To teach problem solving, the standard medical school education required a two-by-two approach consisting of two years of instruction and laboratory-based training followed by two additional years of supervised clinical experience with intermittent step examinations showing mastery of skills and content (Stevens, 2018). The medical field, known for its toxicity and stress inducing requirements, is mimicked by medical education (Grotan et al., 2019; Ward & Outram, DISABILITY DISCLOSURE OF MSSD 29 2016). The environmental barriers along with the behavioral barriers and factors impact individual medical school students' internal factors in a perpetuating cycle. Environmental Barriers Medical school education for students with disabilities can be complex. Navigating programmatic considerations such as whether a program is undifferentiated or differentiated, technical standards, policies and procedures, and scheduling can all become barriers. A continued belief throughout medicine is that all physicians should begin their education in an undifferentiated program (Meeks & Jain, 2018; Schwarz & Zetkulic, 2019). Undifferentiated programs provide a broad medical education to all students within the program. Each student who graduates receives the same degree and an attestation from the medical school that their students have a full understanding regarding all medical fields and the skill sets to practice in any area of medicine (Argenyi, 2016; Meeks & Jain, 2018). VanMatre et al., (2004) disagrees with the concept of an undifferentiated medical education. A qualitative study conducted with 2,930 affiliates of Northwestern University's Feinberg School of Medicine found that almost 70% of those interviewed disagreed with the idea of an undifferentiated medical education, stating that most individuals in medical school will specialize. Respondents further stated that it is near impossible to find a physician that has the skills to independently practice in all areas of medicine. Despite the desire for differentiated medical programs that allow for specialization, the field of medicine continues to rely on organic technical standards that create barriers for individuals with disabilities in medical education. The minimum non-academic criteria utilized by medical schools to determine admission, continued enrollment, and graduation are referred to as technical standards (TS) (Argenyi, 2016; Kezar et al., 2019; Meeks & Jain, 2018; Wainapel, 2015). McKee et al., 2016 portray a field DISABILITY DISCLOSURE OF MSSD 30 where the majority of medical schools adopted organic TS in lieu of functional TS. Organic TS’s pose barriers to individuals with disabilities as the focus remains on how one performs a task and tends to focus on the cognitive, physical, behavioral, and sensory deficits of individuals instead of their abilities, whereas functional TS’s focus on the outcome of a task (McKee et al., 2016). Functional TS’s allow students to utilize accommodations and technology to complete a task despite limitations that may exist due to disability. Where organic TS’s may be discriminatory in nature, due to their rigidity, functional TS’s expand access through the elimination of biased language and the allowance of accommodations and technology to meet specified task competence (Jain, 2020; McKee et al., 2016; Meeks & Jain, 2018; Zazove et al., 2016). An additional concern regarding TS’s includes the lack of transparency within medical school education. Zazove et al. (2016) states that in a document analysis conducted between 2012 to 2014 on 173 medical schools that one in five U.S. medical schools do not make their TS’s readily available and nearly two-thirds of the schools refuse to make accommodations related to vision, hearing, and mobility disabilities. Furthermore, the analysis uncovered that only 58% of the schools' websites displayed the TS’s where they were easily located and only 33% had TS’s that supported students with disabilities. An additional 49% of the schools did not share policies related to TS’s and the accommodation of TS’s. Four percent of the medical schools were found to be completely unsupportive of individuals with disabilities when discussing TS’s and 14% provided no information about TS’s and the accommodation of TSs at all. Wainapel (2015) provided a review of medical school TS’s and found that few have kept pace with the advancing technology or legislative outcomes of the last decade despite the Liaison Committee for Medical Education (LCME) in 2016 evolving towards a more integrative model of TS’. A qualitative study of 47 individuals with disabilities in medical school found that many DISABILITY DISCLOSURE OF MSSD 31 medical schools lacked clear policies and procedures regarding disclosure of disabilities (Meeks & Jain, 2018). Maneuvering through the process of gaining access to accommodations for many in the study became a barrier in and of itself. Unlike secondary education where students are provided accommodations without a formalized request, due to a change in federal law, postsecondary and tertiary education requires that students disclose disability status and request accommodations and support services (Barnard-Brak et al., 2010; Dell, 2003). Many students are unaware of the change in the laws and therefore the shift in responsibility from the education system to the individual (Carey et al., 2014; Dell, 2003; Magnus & Tossebro, 2014). Further exacerbating the disclosure of students with disabilities, Mamboleo et al., (2020) conducted a survey of 289 college students with disabilities, ranging from undergraduate to graduate, to examine factors associated with disclosure and seeking accommodations and/or academic support, found that historical experiences play a significant role in future help seeking behaviors. The researchers found past negative interactions regarding accommodations and use of accommodations with university personnel became deterrents for disclosing disability and requesting accommodations in future educational endeavors. Students who elect to not disclose are not privy to accommodations regardless of apparent struggles. University disability services (DS) offices require students to be proactive in their accommodation requests which requires the students to disclose and prove disability status (Carey et al, 2014; Magnus & Tossebro, 2014). Timely notice to DS offices and appropriate documentation providing the student’s diagnosis, the impact of the disability and the severity of the symptoms is required to determine what accommodations may be reasonable and appropriate in the educational environment (Carey et al., 2014). In addition to providing appropriate documentation, students are required to actively engage in the interactive process with DS DISABILITY DISCLOSURE OF MSSD 32 offices (Carey et al., 2014; Meeks & Jain, 2018). Moreover, the interactive process includes discussions between DS offices and the medical programs to determine fundamental alterations to curriculum, a discussion with the student regarding barriers in the educational program that prevent equitable access, and a review of potential accommodations to minimize or in some cases eliminate the barriers. The process of disclosure and requesting accommodations can be time consuming. Additionally, some students may face a financial burden as documentation can include expensive testing such as neuropsychological or psychological-educational testing which typically requires a treating practitioner (Magnus & Tossebro, 2014). The DS office providers collect all information from the interactive process and then make a determination if a link exists between the disability, symptoms of the disability, the impact of symptoms, and the accommodations requested on the individual's ability to access their education, if the individual is considered an otherwise qualified individual, and align potential accommodations with the program’s fundamental learning outcomes (AHEAD, 2021; Carey et al., 2014) Each medical school and university may differ in the process of disclosure and accessing accommodations and support services. The Association on Higher Education and Disability (AHEAD) (2021) published updated guidelines on documentation requirements following the ADA as amended in 2008. Primary documentation, or direct student reporting, became acceptable in some circumstances as did secondary documentation such as observations and direct interactions with the student. Although acceptable forms of documentation were expanded, the primary form of documentation, external or third parties, remains the preferred method of documentation for the majority of universities (AHEAD, 2021; Lovett, 2012). Once students have gained access to accommodations through the DS office, they now have to navigate the disclosure procedure to the medical school, faculty, and possibly clinical faculty in order for their DISABILITY DISCLOSURE OF MSSD 33 accommodations to be enacted (Meeks & Jain, 2018). Intensifying the disclosure process, many students found a disconnect between the DS offices that granted their accommodations and the medical school staff that implement the accommodations (Meeks & Jain, 2018). Climate of Medical Schools The culture of each medical school is unique and is determined by the beliefs, values and assumptions that are cultivated by those within the system (Erez & Gati, 2004; Meeks & Jain, 2018). Erez and Gai (2004) state that “culture shapes the core values and norms of its members…[and] in the process of modeling and observation [along with] individual actions” (pp. 584-585) the members thereby add to the culture. The cyclical nature of creating culture perpetuates the values and norms established by the attitudes and behaviors of its members. Attitudes and stigma experienced by individuals with disabilities can impact their willingness to disclose and seek accommodations and support services (Argenyi, 2016; BarnardBrak et al., 2010; Magnus & Tossebro, 2014; Lindsay et al., 2018; Meeks et al., 2018; Meeks & Jain, 2018; Sniatecki et al., 2018; World Health Organization & The World Bank, 2011). A qualitative study examining the lived experience of medical students with disabilities at allopathic medical schools in the United States described attitudinal barriers as “pervasive negative perceptions or personal beliefs that focus on a person’s disability rather than their ability and other valued characteristics'' (Meeks & Jain, 2018, pp. 43). Lalvani (2015) performed an exploratory qualitative study in the United States using semi-structured interviews with parents and teachers regarding stigma and otherness and found that despite many teachers believing that stigma is not associated with disability, 83% of the teachers in the study did believe that students with disabilities required significant differences in teaching methods for learning to occur. DISABILITY DISCLOSURE OF MSSD 34 A survey study conducted by The World Health Organization and The World Bank (2011), including over 360 researchers worldwide, found that labels, such as disability, often lead to increased negative attitudes in adults in the general population. Furthermore, the researchers stated that the attitudes of adults were critical in policy development and resource distribution when it came to students with disabilities. The prevalence of misinformation and prejudice about disability in the health professions are significant and often perpetuated by medical practitioners (DeLisa & Thomas, 2004; Iezzoni, 2016; Kirmayer, 2013), and despite the American Medical Association’s (AMA) launching of a Center for Health Equity workgroup to increase diversity and inclusion, they did not address disability as a part of diversity (Sierra & Tutty, 2019). Students with disabilities have consistently reported they were told accommodations were not available or that accommodations would fundamentally alter the nature of the medical curriculum (Meeks et al., 2018; Zazove et al., 2016). Jain (2020), expanding on her prior work with Meeks (2018), stated that medical schools have a significant and long history with oppression and ableism as medical school professionals serve as the gatekeepers to the profession. According to Jain’s (2020) qualitative study with 19 medical school students with disabilities and 27 school officials, the medicalization of disabilities has created a binary relationship between those who diagnose and those who are diagnosed. This divide increased the feeling of otherness as students with disabilities found they were overtly and covertly questioned by faculty members regarding their ability and competence to study and practice medicine (Magnus & Tossebro, 2014). Additionally, students faced microaggressions and macroaggressions, in both the classroom and in clinical rotations, fueled by the subtle, outdated, and distorted assumptions of medical school personnel sometimes leading to prejudicial actions DISABILITY DISCLOSURE OF MSSD 35 (Davidson et al., 2016; Jain, 2020; Magnus & Tossebro, 2014; Meeks et al., 2018; Meeks & Jain, 2018). Additional barriers imparted by instructors included negative attitudes towards students with disabilities and the provision of accommodations along with increased suspicion regarding eligibility and deservingness, concerns of unfair advantages for students with accommodations, and fear of the loss of academic integrity (Magnus & Tossebro, 2014; Sniatecki et al., 2018; Stergiopoulos et al., 2018). Students often feared faculty responses to their disclosure of disability status as they believed faculty would view them as less capable, lower their expectations of their abilities, be considered an inconvenience, humiliate them in front of their peers, be unresponsive when requesting accommodations, or intimidate and excuse them from medical personnel who control their future rotation placements (Hong, 2015; Lindsay et al., 2018; Magnus & Tossebro, 2014; Meeks & Jain, 2018). Lindsay et al. (2018) expanded on faculty attitudes stating many faculty felt accommodations were too stressful and time consuming to put in place and therefore burdensome given their other duties. The impact of medical school personnel’s beliefs and attitudes adds to the culture of medical school education and can impact the attitudes developed by students with disabilities. Medical school students with disabilities can hold conflicting roles as they are both seekers of services as well as providers of services (Stergiopoulos et al., 2018). This dichotomy can create identity confusion as the medicalization of disabilities equates illness with weakness and in a field that expects perfection the importance of stigma management increases (Magnus & Tossebro, 2014; Stergiopoulos et al., 2018). Moreover, students with disabilities feel pressure to avoid disclosure of disability status while feeling the need to prove themselves by performing better than their peers (Meeks et al, 2018; Meeks & Jain, 2018; Sterigopoulos et al., 2018). The DISABILITY DISCLOSURE OF MSSD 36 MSSDs perception of social status within medical schools may be dependent upon whether a disability is visible or invisible (Jain, 2020; Meeks & Jain, 2018). Individuals with invisible disabilities such as mental health or learning disabilities may be less prone to disclose and show a heightened desire to hide their disability status as disability in medical schools are understood to be a negative social identity (Hong, 2015; Jain, 2020; Meeks & Jain, 2018). Lindsay et al. (2018) found some students believed that accommodations gave them an unfair advantage over non-disabled students whereas others felt inferior and less capable if they acquired accommodations such as extra time on examinations or in their OSCE’s or scheduling changes such as no overnight shifts during clinical rotations. Medical school students with disabilities are impacted by the choice of language used in face-to-face interactions and within the policies of an institution (Byron et al., 2005; Stergiopoulos et al., 2018). Institutions that display a propensity towards valuing perfection, long hours, relentless standards, and the need to hide vulnerabilities (Ward & Outram, 2015) as represented through the language used in face-to-face interactions and policies increases the fear of judgment and bias (Meeks & Jain, 2018). The inclination to hide disability was exacerbated by the way their peers talked about disability and how they treated their patients (Meeks & Jain, 2018; Sterigopoulos et al., 2018). Furthermore, students with disabilities who witnessed a change in demeanor of their peers and clinical preceptors, towards patients deemed difficult and whose disability status was discussed in a negative tone, further internalized a presumed stigma. In some cases, the shared stigma of a disability led to informal support networks (Stergiopoulos et al, 2018). Unlike students with invisible disabilities, those with visible disabilities such as wheelchair users, felt more positive attitudes about requesting accommodations (Lindsay et al., 2018). Furthermore, past experiences that were positive in DISABILITY DISCLOSURE OF MSSD 37 nature, led to increased self-efficacy, increased self-esteem, and increased self-advocacy (Lindsay et al., 2018). Yet, Jain (2020) finds that selective disclosure still prevails and is usually done after careful consideration and with an extensive cost-benefit analysis. The implications of negative attitudes, poor language selection, and stigma along with demanding expectations is, as discussed, that students with disabilities perceive they should not disclose disability status. If a disclosure must occur, it is not without trepidation and significant consideration as to the potential loss of reputation and opportunities. Conceptual Framework Bandura’s social cognitive theory (SCT) relies on the reciprocal determinism of environment, behaviors, and person (Schultz & Schultz, 2009) as influential factors in decisionmaking. SCT is used to seek understanding of the perceptions of MSSD’s on the medical school environment, the behaviors of those within the medical school environment, and the individual attributes of MSSD’s that may or may not impact the willingness of students to disclose disability status. To better explain how SCT plays a role in MSSD’s disclosure decisions, viewing SCT through the lens of critical disability theory (CDT) connects the ideas of social norms, normative ideologies, social conditions, and socio-political constructs to the power dynamics that aid in the oppression of marginalized populations (Hosking, 2008). Environmental barriers such as policies, procedures, and processes can aid or hinder the creation of a culture of inclusion. If disability service offices and medical schools lack consistency or clarity in their policies, procedures, and processes then the desired diverse culture, including students with disabilities, could be called into question. Addressing these organizational structures requires looking at: a) social norms such as heightened competition, long hours and stress as normal, and high achieving attitudes, b) normative ideologies of DISABILITY DISCLOSURE OF MSSD 38 accommodations and support services as offering an edge to students with disabilities, c) social conditions such as medical student economics (i.e. loans), access to mental and physical health care, and inclusivity, and d) socio-political constructs such as policies, procedures, and processes that lead to a perceived or real culture of excellence and a competitive climate that does not allow for mistakes. The organizational structures each impact the overall medical school environment and the behaviors of individuals within that environment, creating a silent microculture that precludes individuals from having any perceived deficits such as a disability. Only by addressing the environmental barriers, behavioral barriers and factors, and the individual factors that impact disability disclosure decisions can medical schools and disability personnel create a psychologically safe zone that would invite students with disabilities to disclose disability status. Bandura (1977) states that people are a summation of autonomous beings within an environment full of influences. Bandura (1999) believed that individuals could be exposed to imposed environments, selected environments, and constructed environments. Medical school students select their medical school yet end up in an imposed environment due to the medical school’s policies, procedures, and practices. Jain (2020) discusses the idea that medical school students disclose disability status for political reasons that can include changing the culture and bequeathing knowledge regarding disability with the end goal of constructing an environment that breeds more empathetic practitioners. It is the behaviors shown through attitudes, stigma, and stereotypes of peers and medical school employees in the imposed environments that perpetuate the culture of medical schools. The clinicalized view using a biomedical model of viewing disability along with the highly competitive and perfectionistic values are supported through the long-standing policies, DISABILITY DISCLOSURE OF MSSD 39 procedures, and organic technical standards used by medical schools; all of which impact not only the education of a MSSD but their future employment pipeline. The individual students with disabilities come to medical school with their own thoughts regarding disclosure of disability status given past experiences that are either confirmed or contradicted by their perceptions of medical school social norms and the environment and behaviors that make up the culture of the organization. Medical school is a network of social structural influences including medical school students with disabilities, with their own agency driven by their behaviors, thoughts, anticipated consequences, and prospective actions as well as the medical school environment (Bandura, 1999; Bandura, 2019). The environment made up of the physical space, those within the space, and the policies, procedures, and practices that make up the social norms impact the social behaviors of all within the environment (Bandura, 2019). Furthermore, the patterns of behavior, acquired either indirectly through observation or directly through experience, influence the medical school student’s decisions as well as the actions of others leading to the social diffusion of acceptable behaviors (Bandura, 1999; Bandura 2019). This reciprocal interaction of environmental barriers, behaviors barriers and factors, along with individual medical school student factors create a socio-structural system that MSSDs may feel they have little control over and little leeway to maneuver differently than the expected established norms (Bandura, 1999). The conceptual framework for this study is depicted in Figure 2, providing a visual illustrating that in medical school, students with disabilities face a reciprocal interaction of their environment with the behaviors of those in the environment which then impact individual decisions. Figure 2 DISABILITY DISCLOSURE OF MSSD 40 Conceptual Framework incorporating factors that may impact MSSD’s disability disclosure and seeking of academic accommodations and support services. Summary This literature review discussed some key factors in the decision of medical school students to disclose disability status during their medical school education. To allow for a thorough understanding of the real or perceived barriers and factors faced by medical school students in the disclosure process, disability was first defined, and three models of disability were discussed to provide context to the variance in how MSSD may view disability status. A brief overview of two substantial laws that shaped the landscape of disability and disability within society allowed for insight into the changes in requirements for MSSDs disclosure of disability and the responsibilities students must now negotiate within a complex medical school culture. Furthermore, the literature examined the attitude and stigma associated with disability status and the individual factors that drive the decisions of MSSDs regarding disclosure of DISABILITY DISCLOSURE OF MSSD 41 disability status and the seeking of accommodations and academic support services. Finally, the review of relevant literature included a brief discussion on the perceptions of MSSDs of their environment as well as the behaviors of those within the environment and the bidirectional influence on their own cognitions, efficacy, and advocacy. The lived experience of MSSDs and the real or perceived barriers experienced was placed into the context of Social Cognitive Theory by connecting environmental, behavioral, and individual factors to learning in a social context. The influence of disability models on individual perceptions was associated with Critical Disability Theory providing a lens through which to understand SCT’s influence on the disclosure of disability status and the seeking of accommodations and academic support services by MSSDs. In response to the environmental barriers, behavioral barriers, and individual internal factors MSSDs face when deciding to disclose disability status, researchers found that significant gaps in understanding exist as the current research explores students only in allopathic medical schools that have elected to disclose (Meeks & Jain, 2018).This study is interested in adding to the research of the lived experience of MSSDs regarding barriers in disclosure of disability status by examining the experience of MSSDs who have elected to not disclose in addition to those who have disclosed. DISABILITY DISCLOSURE OF MSSD 42 CHAPTER THREE: METHODOLOGY This study examined the lived experience, relating to disclosure decisions, of medical school students with invisible disabilities. This chapter briefly restates the research questions provided in chapter one before moving into the design of the study. Design of the study includes research participants, recruitment methods, instruments, and how the data was analyzed. The chapter concludes with an overview of the researcher and their ethics as it applied to the study and its participants. Research Questions RQ1: What, if any, systemic barriers (i.e., technical standards, undifferentiated programs, processes/procedures, etc.) exist that impact the willingness of students with disabilities in allopathic medical schools to disclose disability status? RQ2: What internal factors, if any, (i.e. stigma, negative attitudes, culture, climate etc.) impact the willingness of allopathic medical school students with disabilities to disclose disability status? Overview of Design A qualitative study was selected to address the research questions. Inductive in nature, qualitative studies are rooted in inquiry and gaining an in-depth understanding of a topic in an individualized manner to generate hypotheses through decoding what surfaces from the participants (Creswell & Creswell, 2018; Curry & Nunez-Smith, 2015; Merriam & Tisdell, 2016). Using the researcher as the primary tool for interpretation, this qualitative study looked at how individuals interpret their experiences and the meaning they attributed to their experiences which in turn helped to construct their world view (Merriam & Tisdell, 2016), with the purpose DISABILITY DISCLOSURE OF MSSD 43 to uncover what, if any, environmental and behavioral barriers existed within medical schools along with internal factors that impacted MSSD’s willingness to disclose disability status. A qualitative study was selected based on three primary factors. First, the tenets of a qualitative study are based in inquiry and discovery (Creswell & Creswell, 2018; Merriam & Tisdell, 2016). Second, the idea that individuals construct their reality based on their interaction with the environment aligned with qualitative methods (Merriam & Tisdell, 2016). Finally, a qualitative study allowed the researcher to focus on in-depth discussions to uncover the development of patterns and themes (Curry & Nunez-Smith, 2015) that assisted in surfacing environmental and behavioral barriers, along with internal factors, that impacted MSSD’s willingness to disclose disability status. Interpretation of environmental and behavioral barriers along with individual factors that prevented disclosure, allows for understanding how to address aspects of disability diversity and inclusion at a systemic level. A qualitative approach to this study allowed patterns and themes to arise from an inductive process (Merriam & Tisdell, 2016) and aided in the understanding of the lived experience of medical school students with disabilities through a holistic approach to a complex problem (Creswell & Creswell, 2018). This study utilized a two-pronged approach. First, an email including a link to a recruitment survey was sent to the heads of curriculum, medical disability personnel, or diversity and equity representatives at 172 allopathic medical schools in the United States to reach maximum variation within the targeted population (Merriam & Tisdell, 2016). The research requested that a pre-drafted email with a Qualtrics recruitment link be sent to their medical school student population. Second, the researcher used primarily open-ended interview questions with confirmed participants selected from the recruitment survey pool to provide a more DISABILITY DISCLOSURE OF MSSD 44 conversational tone and allow everyone the opportunity to explore the questions providing their own evaluation of the topics (Patton, 2002). Research Site and Participants Site Allopathic medical schools were selected as prior research has focused on Medical Degree (MD) granting institutions. The continued focus on allopathic medical schools is to add to the research by filling in gaps in participant selection. Prior research has found difficulty in understanding why students with disabilities chose to not disclose disability status as researchers historically tended to gain access only to students who opted to disclose (Meeks & Jain, 2018). Additionally, in 2019 estimates of medical school graduates from allopathic medical schools was 19,937 whereas osteopathic medical schools were 6,416 (American Association of Colleges of Osteopathic Medicine, 2019; Association of American Medical College, 2021) showing 68% of medical students elect to attend allopathic medical schools in the United States allowing for a larger pool of potential participants. One hundred seventy-two allopathic medical schools are dispersed throughout the United States (American Medical Association, 2022). Given the breadth of location, the researcher elected to use the Zoom ® virtual platform to perform all interviews. Zoom ®, a video conferencing platform, allowed the researcher to provide individual customized links to each participant with a passcode to provide a private meeting room and limit the potential of uninvited guests. Additionally, the virtual platform allowed the researcher the flexibility of meeting on the participants’ schedule as no travel was required. Furthermore, the Zoom ® platform prevented disruption to the medical schools and the interviewees. Finally, the Zoom ® platform allowed for DISABILITY DISCLOSURE OF MSSD 45 recording of interactions with participants throughout the research allowing a pathway to credibility and trustworthiness. Participants In seeking maximum variation, purposeful sampling was used. A non-probability purposeful sample is common in qualitative research as this method is about discovery and seeks in-depth understanding among fewer participants (Merriam & Tisdell, 2016). Moreover, maximum variation was sought to aid in broader representation among medical students, with invisible disabilities, disclosure decisions. I used non-probable sampling methods as I sought a population with specific characteristics for inclusion to the study. Though not generalizable, nonprobable sampling allowed for a deliberative choice in participants (Etikan et al., 2016). Purposeful, non-probable sampling for maximum variation allowed me to target current students in allopathic medical schools in the United States with invisible disabilities, or disabilities not readily apparent to others. Robinson and Leonard (2019) stated that the selection of study participants is integral to social and behavioral research. Therefore, I sought 12 to 15 participants who met the above stated criterion to speak to their decision to disclose, or not, their disability status to the medical school or university disability offices. Initially, participants who had not disclosed disability status were the primary population sought as they are an understudied segment of individuals with disabilities in medical schools. As they tend to be a hidden population, researchers are not fully certain why they elect to not disclose or seek support services. I believed I would have access to this segment of the population who elected to not disclose through contacting the heads of curriculum, medical disability personnel, or diversity and equity representatives of the 172 allopathic medical schools, however, this was a difficult population to locate as there is no formal university record of their existence due to the lack of DISABILITY DISCLOSURE OF MSSD 46 formalized disclosure. As such the research encountered significant difficulty in the recruitment of MSSD’s who elected to not disclose disability status, and therefore reverted to broadening criterion to include allopathic medical school students who disclosed disability status in addition to those who did not disclose. Although individuals with disabilities are a protected class per the Rehabilitation Act of 1973 and the Americans with Disabilities Act, the population I sought to study were 18 years of age or older with the cognitive capacity to provide or withhold consent. Identification of study participants used multiple methods. The first, a recruitment survey (See Appendix A) sent to the heads of curriculum at 172 allopathic medical schools in the United States described the study and requested they forward the provided email including a recruitment survey link to all currently enrolled medical students. The recruitment survey assisted in the purposeful non-probable sampling for maximum variation. Individuals who responded to the recruitment survey and met pre-stated selection criteria received an email (See Appendix B) within 48 hours to confirm interest in participating in the study and provided the information sheet for non-medical research (See Appendix C). It was predicted that not all heads of curriculum would email their student bodies as requested as university personnel are often quite busy with competing priorities and are protective of their student body, which would make a request to forward a recruitment survey low on their priority list. Therefore, in addition to contacting the heads of curriculum at 172 allopathic medical schools, I solicited survey participation via social media (See Appendix D). Abiding by Facebook, Instagram, LinkedIn, and Reddit’s rules and regulations regarding generated content, I used a concise social media post that contained information on the study and a link to the Qualtrics ® recruitment survey. I requested participation from two Facebook groups, Medical Students with Disabilities and Medical Students, a repetitive Instagram post, a repeated LinkedIn post, and one Medical Student DISABILITY DISCLOSURE OF MSSD 47 group on Reddit Given the geographically disbursement of both allopathic medical schools and medical students within the United States, an electronic survey method allowed for broad dissemination to aid in the purposeful non-probable sample that provided maximum variation. The survey was expected to remain open until 12 to 15 participants participated in the interview. The researcher unsuccessfully used the snowball method of recruitment to recruit participants until a conclusive result, or saturation, was reached (Creswell & Creswell, 2018; Merriam & Tisdell, 2016; Qualtrics AU, 2021). To protect referred students, I provided my contact information to the current interviewee and asked them to supply my contact information to the referred participant if they felt comfortable doing so. I developed an email (See Appendix E), in the case that more than 15 participants showed interest in participating in the study, that thanked each for their willingness to participate but no further participants were needed at the time. However, this was unnecessary given the difficulty in recruitment of the minimum required participants. Recruitment survey Post IRB approval I distributed the recruitment survey including information on informed consent. The brief, five-minute, recruitment survey initially consisted of ten closed ended questions and two open ended questions developed to aid in the selection criteria of potential participants and determine if accommodations would be needed during an interview process (See Appendix A). The brevity of the survey meant to combat survey fatigue and non-responsiveness, (Robinson & Leonard, 2019) was expanded to include demographic information after the first 40 responses as the recruitment method proved to be too long and cumbersome for potential participants (See Appendix F). The use of the recruitment survey allowed participants who met selection criteria for the study to opt into the interview performed for the qualitative study and DISABILITY DISCLOSURE OF MSSD 48 informed the researcher of any need for accommodations throughout the interview. Additionally, the researcher provided their contact information for potential participants who wished to ask additional questions or were unsure of their willingness to participate based on information provided. The use of a recruitment survey mitigated the effect of social desirability bias that could appear in questions related to disability status, allowing for confidentiality. The desire to portray oneself in the best light possible through embellishing of, or non-truthful, responses was reduced through closed ended questions with fixed responses (Robinson & Leonard, 2019). To improve accuracy of diagnoses, retrieval cues were provided in questions two and four to aid in appropriate categorization of disability status that can be connected to the concept of a visible or invisible disability. The researcher used Qualtrics’ ® describe to provide general descriptive data, eliciting numbers and categories of respondents to aid the solicitation of participation in interviews. Although I was unable to guarantee that no harm will come to participants who take the recruitment survey, harm was minimized by allowing for anonymity in the settings of the Qualtrics ® survey. Furthermore, the brief recruitment survey allowed each participant to opt in or out of further contact by answering if they were willing to participate in a confidential interview as part of the research study. Participants had an opportunity to provide their name and email address in the final question if they wish to participate in the interview. Participants were informed they may use a pseudonym or only a segment of their name in this final question further allowing for confidentiality in the recruitment process. Finally, the questions were strategically ordered using skip logic to allow individuals who did not qualify, based on any one question, to skip to the end of the survey prior to divulging sensitive information such as disability status or type. DISABILITY DISCLOSURE OF MSSD 49 The researcher provided a brief introductory email to the heads of curriculum, medical disability personnel, or diversity and equity representative at all 172 allopathic medical schools in the United States that described the overall study and purpose (See Appendix G). The email asked for assistance from the heads of curriculum, medical disability personnel, or diversity and equity representative to broadly distribute a separate attached email with a Qualtrics ® recruitment survey link (See Appendix H) to all currently enrolled medical students. To protect potential participants, the heads of curriculum and other medical school personnel would not be privy to any respondents or information shared in the recruitment survey. Instrumentation and Data Collection The instrumentation utilized included one-on-one virtual interviews. I utilized a standardized, semi-structured approach to interviews (See Appendix I) with participants who met selection criteria and opted to participate in the study. The semi-structured interview provided commonality of structured questions yet allowed flexibility in the interview format for each participant to share what they deemed most important and allowed the researcher to probe more deeply based on information shared by participants (Dearnley, 2005; Merriam & Tisdell, 2016). The researcher sought and obtained IRB approval prior to scheduled interviews and data collection. Although interviews can be a complex phenomenon as both the researcher and the participants have biases and predispositions, interviews were selected to allow for nuanced and in-depth data collection to answer the qualitative research questions (Merriam & Tisdell, 2016; Robinson & Leonard, 2019). Despite the time-consuming nature of interviewing, the level of rich data and the ability for participants to reflect on and articulate their experiences through the lens of their world view (Creswell & Creswell, 2018; Merriam & Tisdell, 2016; Robinson & Leonard, 2019) was imperative to answer the study’s qualitative research questions. The semi-structured DISABILITY DISCLOSURE OF MSSD 50 interview approach provided commonality in topics across all participants yet allowed the researcher to remain dynamic and probe more deeply pending the interviewees response (Dearnley, 2005; Merriam & Tisdell, 2016). Creswell and Creswell (2018) expanded on the benefits of semi-structured interviews stating they promote rich dialogue and elicit the views and opinions of participants on selected topics. Participants who consented to further contact in the recruitment survey were contacted via email thanking them for their participation in the survey and inviting them to volunteer for a one-on-one interview (See Appendix B). Interviewees learned that the purpose of the interview was to explore their experiences as medical school students with invisible disabilities and the barriers and factors that impacted their willingness to disclose disability status. I provided the information sheet for non-medical related research (See Appendix C) along with an opportunity to opt out of further communications and a chance to provide preferred days and times for interview scheduling to all potential participants. Interviewees received a confirmation calendar invitation email including a Zoom ® link and two attachments, the IRB approval notification and the information sheet for non-medical research. Twenty-four hours prior to the scheduled interview, the individual received a reminder email with the information sheet for non-medical research attached. The start of each interview included a brief review of the study and data collection procedures. I conducted a full review of the information sheet for non-medical research and highlighted informed consent and the participants right to opt out of the research, their ability to end their participation at any time throughout the interview, and their right to not answer specific questions throughout the interview process. I asked all participants if they had any questions or concerns then after a pause asked for their verbal consent to continue to the interview. All DISABILITY DISCLOSURE OF MSSD 51 interviews were conducted via the Zoom ® virtual platform and recorded. Additionally, I took minimal memos throughout the interview as necessary to denote changes in participants demeanor, emotionality, potentially conflicting statements and possible emerging patterns and themes. All recorded interviews were transcribed using Rev.com ®. Rev.com (n.d.) is a transcription service that has strict customer confidentiality policies and requires all their professionals to sign an NDA and confidentiality agreements. Rev.com ® used a secure platform and encrypted all data transmitted as well as data stored on protected AWS servers using TLS 1.2 encryption. Finally, I requested that Rev.com delete all files shared once I received the transcription. The interview protocol, provided in Appendix I, used a semi-structured approach. The interview guide provided the basic questions each participant was asked along with additional probing questions and topics (Merriam & Tisdell, 2016). Each question was developed to be flexible in nature and in response to each participant's prior response. Time was spent on the wording and ordering of each question along with transition statements, however, the semistructured approach allowed for a dynamic interview where wording and order was changed based on each participant (Merriam & Tisdell, 2016). Interviews began with basic demographic information that confirmed qualifying criteria and information such as preferred pronouns and identification of medical school to guide additional questions and allow for the use of artifacts when available to confirm or refute certain statements made by participants. Open ended questions were used to aid in answering research questions. The open-ended nature and responsive nature of questioning allowed participants the ability to discuss their experiences and explore in depth the barriers and supports in their medical school program. DISABILITY DISCLOSURE OF MSSD 52 If necessary, post-interview participants were provided their transcript via email and asked to review and affirm aspects where I was unclear for accuracy. Participants who did not respond within four days received a reminder email and were provided two additional days for review and affirmation. Non-responses are noted as a limitation to the study. One participant was asked to clarify a paragraph to ensure the researcher understood the context. A second participant was asked additional questions, via email. Neither participant responded to the email requests. Data Analysis To aid in data analysis, I utilized Qualtrics® descriptive data for recruitment surveys and Excel for interview data. Zoom® recordings, interview transcriptions, memos, and any other identifying information are stored in a password protected file on an external hard drive using Microsoft’s BitLocker ® and stored in a lockbox in a home office. Interviews were used to allow rich context to answer the research questions. NVivo, provided by USC’s ITS, was initially used as part of open coding to determine patterns and themes (Merriam & Tisdell, 2016; Patton, 2002) as part of the inductive process. However, I moved away from NVivo and to Excel to better aid in the coding process allowing for sorting and filtering for emerging themes. The inductive process allowed the researcher to reason from institutional barriers and individual factors regarding disclosure decisions to general theories (Curry & Nunez-Smith, 2015). Axial coding aided in reducing the number of codes and showed a relationship between emerging themes and patterns by comparing the collected data from interview participants (Moghaddam, 2006). Contextual coding was utilized to aid in understanding implicit terms. The translation of terms used by MDDS, provides clarity around circumstances to which the participants are responding (Moghaddam, 2006) relating to the DISABILITY DISCLOSURE OF MSSD 53 environmental and behavioral barriers along with individual factors that impacted their decision to disclose disability status. Contextual coding occurred during individual interviews through memo notations to offer clarity of comments and then were cross checked across interviews for potential patterns. Finally, I checked for saturation of concepts to show adequate participation and engagement had been achieved providing an additional check for credibility and trustworthiness (Merriam & Tisdell, 2016). Credibility and Trustworthiness I sought and obtained Institutional Review Board (IRB) approval prior to conducting my study to establish credibility and trustworthiness. Plausible findings that explained the research questions and adhered to what is already known provided credibility in qualitative research and alternative explanations when possible (Currey & Nunez-Smith, 2015). Qualitative research provides a holistic underpinning that is fluid, complex, and relative in nature (Maxwell, 2013; Merriam & Tisdell, 2016). The trustworthiness and dependability, or ability, of the researcher depends on their ability to articulate the methods and shifting circumstances throughout the study (Curry & Nunez-Smith, 2015) as the researchers attempt to uncover the participants' experience. Like all researchers, I came to this study with biases and predispositions. Although these cannot be fully eliminated (Maxwell, 2013), I attempted to recognize and minimize the impact of any biases and predispositions I held throughout the study through a thorough review of my positionality and acknowledgement of potential biases. The researcher effect required continuous and constant reflection throughout the duration of the study to increase credibility (Creswell & Creswell, 2018). Furthermore, I elected to record all interviews, with permission from participants, and had the interview transcribed by a third party, Rev.com. Although I took memos, the recording of interviews allowed me to check my memos against the recordings and DISABILITY DISCLOSURE OF MSSD 54 transcripts for accuracy and potentially failing to see pertinent responses and data (Patton, 2002). Merriam and Tisdell (2016) also recommended member checking, or respondent validation, where, if needed I would solicit feedback from my research participants. Upon receipt, I checked for accuracy of statements and reviewed each transcript corresponding to the recording. If, after review, an area of the transcript required clarification of a topic that may have been misrepresented or that I misunderstood, I reached out to the participant for illumination. As interpretations can widely vary due to perceptions and biases, member checking, as needed, provided me the opportunity to view participants' responses in relation to the circumstances (Merriam & Tisdell, 2016). Finally, I checked for saturation of concepts to show adequate participation and engagement had been achieved, providing an additional check for credibility and trustworthiness (Merriam & Tisdell, 2016). To address trustworthiness, I journaled my approach to the study, documenting my approach to the study, pertinent decisions, and my perspective on data analysis to maintaining alignment with my research questions and took into account the developed conceptual framework and participant selection (Creswell & Creswell, 2018; Merriam & Tisdell, 2016). Furthermore, the journal method allowed for an audit trail providing a pathway for future researchers. Due to time constraints and a small pool of participants I was unable to pilot my interview protocol. However, I utilized approaches taught throughout the Inquiry series that provided training and practice (Merriam & Tisdell, 2016) in instrument development. Additionally, I adhered to the definition of developed codes throughout data analysis by consistently comparing the data with the codes and my journal (Merriam & Tisdell, 2016). DISABILITY DISCLOSURE OF MSSD 55 The Researcher As an able-bodied practitioner in the field of disability studies without a medical background I am considered an outsider in many respects. I have worked over two decades in the disability field reviewing documentation, providing academic coaching and accommodations, at times denying accommodation requests for students with disabilities, and serving as an expert in the field at the national level often educating other disability professionals. Furthermore, in 2016 I was charged with establishing a university’s inaugural clinical accommodations program, that would focus on the unique accommodations necessary to make clinical rotations, rounds, and internships accessible for students with disabilities. This extensive experience placed me as an insider in the field of disability studies and allowed for numerous preconceived notions of students with disabilities due to the anecdotal stories shared by the students in clinical programs with whom I worked, what their experience may be in education, and at times a belief that I may understand their experiences as an individual with an invisible disability. My education and training in the field of psychology added a further complicating layer relating to the diagnosis of disability as I was trained in neuro-psychological evaluations and diagnosing. Bogdan and Biklen (2007) stated that within every relationship there are politics of power that can create hierarchies and potential issues with trust. As a student researcher I disclosed that I worked in the field of disability services for over two decades and held positions of power and authority in the field and more importantly with students. Therefore, the potential of power dynamics that could impact a student’s willingness to freely share their experiences for fear of judgment, misinterpretation of their comments, or feelings of conflict due to my organizational affiliation existed. As such it was imperative that I openly shared the purpose of the study and how the data would be used (Patton, 1987). DISABILITY DISCLOSURE OF MSSD 56 To counter my potential bias and predispositions in thinking, I journaled throughout the duration of the study. Journaling included potential biases, thoughts relating to the study, hypotheses, my perceptions on interactions with participants, interactions with data during the collection and analysis phases, and member checking during and post-interviews. Additionally, I paid careful attention to generalizations among my sample given past experiences with the population. Further, I showed caution in not prescribing emotion and meaning to the experiences of participants as I believed I may draw connections between their experiences and those of prior students with whom I worked. To address these concerns, I checked my interpretations with participants asking for clarity (Merriam & Tisdell, 2016) and provided a psychologically safe environment for participants to correct me as necessary. An in-depth understanding of disability and education law aided in the protection of the population prior to, during, and post study. To further mitigate some of these concerns I built rapport with interviewees, negotiated permission with the interviewees, and provided each interviewee with an explanation of the study and how data would be used (Bogden & Biklen, 2007). Merriam and Tisdell (2016) also stated the importance of peer examination and feedback both within the development of the questions and within the coding process to help minimize bias in the development of questions and the interpretation of the data. Finally, I asked each interviewee to verify my interpretation of aspects of our interview throughout to provide a level of credibility by allowing for in the moment corrections of misinterpretations. Ethics Ethics played a significant role in the ability to produce a credible study (Bogden & Biklen, 2007). Merriam and Tisdell (2016) stated that an ethical study relies on the values and ethics of the researcher. As such, it is my responsibility as the researcher to ensure that I DISABILITY DISCLOSURE OF MSSD 57 provided impeccable integrity and upheld ethical considerations throughout. My values of transparency to the extent possible, honesty, the belief that all individuals should be treated with respect and dignity, and the belief that equitable access in all avenues of life, including education, benefits society guided my ethics. Additionally my background in psychology, although a potential disadvantage when considering biases, was beneficial as I recognized and acknowledged discomfort in the participants during the interview and adjusted the interview protocol to ensure well-being as needed. Although the potential for harm always existed in a study using human participants (Merriam & Tisdell, 2016; Robinson & Leonard, 2019), the approval of my study through the Institutional Review Board minimized the potential harm. In addition to IRB approval, I completed Citiprogram® trainings including Human Subject Training, Social Media Research Recruitment Training, and HIPPA training. As my participants were individuals with disabilities, it was imperative that I provided a solid basis of confidentiality to allow my participants to feel comfortable in the study. When using the snowball method, I provided my contact information and a link to the Qualtrics survey to the participant to pass along in order to allow anonymity for the referred participants. Additionally, all participants needed to feel comfortable throughout the duration of the study, in my ability to accurately represent their experiences, and in the appropriate and safe storage of collected data. To address these ethical concerns, I designed a protocol to help in the reduction of risk to my participants. I ensured all participants were provided the Information Sheet for NonMedical Research at multiple points including a verbal overview at the beginning of the interview to ensure understanding of the study, purpose of the study, and consent to participate. All participants were informed that their participation was voluntary, and they were able to opt out of the interview at any time and they had the option to not answer any questions posed. DISABILITY DISCLOSURE OF MSSD 58 Moreover, participants were asked to provide consent to recording of interviews and for member checking of transcripts. Demographic information was limited to that which is pertinent to the study (Creswell & Creswell, 2018). To aid in data analysis, Zoom® recordings, interview transcriptions, memos, and any other identifying information was stored per USC’s data protection guidelines for academic need and electronic media, in a password protected file on an external hard drive using Microsoft’s BitLocker ® and stored in a lockbox in a home office (Anagnos, 2021). Ethical considerations were reevaluated regularly throughout the study to ensure I upheld my stated values and the protection of my sample population. DISABILITY DISCLOSURE OF MSSD 59 CHAPTER FOUR: FINDINGS The intention of this study was to examine the factors that impact the willingness of allopathic medical school students with invisible disabilities to disclose disability status. The study explored the experiences of nine allopathic medical school students within the United States of America to better understand what factors influence a student’s motivation to disclose, or withhold, disability status in medical school. Recruitment surveys were sent between June 2022 through January 2023 seeking maximum variation with purposeful non-probable sampling through Qualtrics ® to aid in specific population characteristics for inclusion. One-on-one interviews, conducted via Zoom ®, using semi-structured interviewing began August 2022 and concluded with the ninth participant in November 2022. Although additional participants were sought through January 2023, no further participants were recruited, and no additional interviews were conducted. The findings of the qualitative study provided insight for allopathic medical school administrators and disability staff personnel into the disability disclosure decisions of allopathic medical school students with invisible disabilities. This chapter includes a description of participants, and the findings guided by the following research questions: RQ1: What, if any, systemic barriers exist that impact the willingness of students with disabilities in allopathic medical schools to disclose disability status? RQ2: What internal factors, if any, impact the willingness of students with disabilities in allopathic medical schools to disclose disability status? Participants Participants in this study were currently enrolled in an allopathic medical school located in the United States of America. Each participant was assigned a pseudonym, and the attended DISABILITY DISCLOSURE OF MSSD 60 universities were only identified based on size, type, and region to protect the identities of participants. Furthermore, although gender, ethnicity, and age were collected as part of demographic data, these categories were removed due to unexpected low participation and a concern of keeping participants' identities anonymous. Table 1 presents the relevant demographic characteristics of the study participants. Table 1 Demographic Characteristics of Study Participants Participant Year School Region Invisible Disability Type Disclosures Blake M1 Medium Private, Ivy Northeast Medical disability Yes Quinn M1 Large, Public Midwest Learning disability Yes Noah M3 Large, Public Midwest Learning disability Yes Harper M1 Large, Public Midwest Psychological disability Yes Remy M1 Large, Public South Psychological disability No Riley M1 Medium, Private Northeast Psychological & learning disability No Taylor M1 Medium, Private Northeast Learning disability Yes Sage M1 Medium, Private Northeast Learning disability Yes Aspen M1 Medium, Private, Ivy Northeast Medical disability Yes The study initially sought to recruit current allopathic medical school students with invisible disabilities who elected to not disclose disability status. However, due to the difficulty in recruiting this hidden population, the participant pool was broadened to include current allopathic medical school students with invisible disabilities who did disclose to a minimum of DISABILITY DISCLOSURE OF MSSD 61 one employee of the medical school. Although the participant pool was augmented, similarities existed among those who disclosed to those who did not disclose. Table 2 presents the participants’, using pseudonyms, stated historical barriers, medical school specific barriers, and the assets each individual shared that may have impacted their ability to disclose. Table 2 Barriers and Individual Assets that May Impact Disability Disclosure Decisions Participant Disclosed Status Historical Barriers Medical School Barriers Individual Assets Blake Yes ● Discrimination & stigma. ● Process of receiving accommodations ● Documentation requirements ● Shifting medical coverage ● Gap in medical coverage and services ● Gap in medicine due to lack of coverage ● A specific accommodation was not approved ● Perceived tokenism ● Stigma and fear of discrimination. ● Help-seeking behaviors (Sought assistance; Sought knowledge of schools from alumni; Reached out to disability office to learn about program). ● Advocate (started DEI initiative; involved in health justice movement ● Self-aware. ● Prior exposure to doctors with disabilities ● Efficient (planned clerkships based on disability progression). ● Creative. Confidence Quinn Yes ● Fear of stigma and discrimination. ● Ability to keep up with workload (reading) ● Self-acceptance. ● Help-seeking behaviors (always asks for DISABILITY DISCLOSURE OF MSSD 62 ● Fear of stigma & discrimination ● Lack of DEI efforts including disability. what is needed; spoke to disability office re: accommodations ). ● Persistent (not a quitter) Noah Yes ● No history: Diagnosed as adult. ● Fear of retaliation/discrimi nation ● Lack of trust of medical school personnel in clerkships ● Fear of loss of opportunities and power dynamics ● Stigma ● Fear of humiliation if disability is known ● Lack of knowledge of available services ● Noisy testing room ● Getting diagnosed took a long time ● Vicarious experiences of discriminatory language. ● Building rapport ● Navigating conflict ● High performing ● Empathetic ● Efficacious Harper Yes ● Lack of understanding from faculty ● Discriminatory language use ● Stigma ● Fear of discrimination and being seen as different ● Lack of understanding from faculty ● Discriminatory language use Stigma ● Fear of discrimination and being seen as different ● Performative DEI efforts ● Unrealistic expectations from medical school personnel ● Help-seeking behaviors (tutoring, extra sessions, accommodation) ● Self-assured ● Self-aware ● Efficacious ● Prior experience at hospitals ● Self-advocate DISABILITY DISCLOSURE OF MSSD 63 Remy No ● Lack of knowledge of available accommodations ● Belief they cannot get accommodations ● Performative support efforts ● Lack of information regarding how to get services/accommodat ion ● Lack of trust ● Lack trust in faculty ● Fear of discrimination and stigma ● Lack of knowledge of available services. Stigma ● Lack of knowledge of available accommodations ● Belief they cannot get appropriate accommodations ● Performative DEI, support efforts, and personnel ● Lack of support from medical school personnel ● Lack of information regarding how to get services/accommod ation ● Lack of DEI efforts from university/student led DEI efforts ● Lack of basic support (housing) ● Culture of perfectionism ● Lack of trust ● Constant pressure to be perfect ● Lack trust in faculty ● Fear of discrimination and stigma ● Interpersonal interactions with faculty (power dynamics) ● Lack of long-term support services (counseling) ● Lack of knowledge of available services ● Stigma ● Perfectionistic culture. ● Self-care ● Persistence ● Creates supportive environment for self with peers ● Help-seeking behaviors ● Self-aware ● Developed good coping mechanisms ● Advocate ● Efficacious Riley No ● Perception of lack of accommodations ● Interactions with faculty ● Perception of lack of appropriate accommodations ● Help-seeking behaviors ● Self-acceptance ● Efficacious DISABILITY DISCLOSURE OF MSSD 64 ● Mistrust of faculty ● Lack of understanding of accommodation processes (admin & faculty) ● Stigma ● Lack of cultural sensitivity ● Interactions with faculty ● Lack of DEI efforts/performativ e DEI efforts ● Lack of DEI discussions ● Lack of interactions with faculty ● Mistrust of faculty ● Lack of understanding of accommodation processes (admin & faculty) ● Stigma ● Lack of cultural sensitivity ● Transparent ● Advocacy ● Resourceful Taylor Yes ● Available accommodations ● History of unclear processes ● Time consuming processes ● Fear of repercussions and discrimination ● Stigma ● Extreme requirements and expectations ● Siloed services ● Lack of disability as a part of DEI ● Fear of repercussions and discrimination ● Stigma ● Fear loss of opportunities ● Help-seeking behaviors ● Self-advocate ● Resourceful ● Self-advocate ● Self-aware Sage Yes ● Fear of discrimination and stigma ● History of difficulty getting accommodations ● Evidence of support from university. Administrator’s lack of knowledge of processes between departments. Trust in disclosure. Language use by faculty & administrators. Fear of being viewed as incompetent/incapa ble ● Advocate & selfadvocate ● Efficacious ● Self-aware ● Help-seeking behaviors ● Resourceful ● Extensive support system ● Open & transparent about disability ● Acknowledged accommodations were necessary ● Confident DISABILITY DISCLOSURE OF MSSD 65 Aspen Yes ● Forced disclosure by parents in undergraduate – no choice ● Stigma ● Discrimination ● Expectations ● Lack of information shared about disclosures and where to receive services ● Lack of support from disability service personnel ● Accommodations were necessary ● Help-seeking behaviors ● Self-confidence Research Question 1: Systemic Barriers that Impact Disability Disclosure Research question one sought to understand aspects of the medical school as an institution, and those that represent the institution, on the disability disclosure decisions of students. Two themes emerged throughout the semi-structured interview process. A finding was determined when described by more than four of the nine participants. Theme 1: Psychological Safety Psychological safety is the belief that one can take risks in a particular environment without fear of negative repercussions or pressure to withhold information (Mogard, et al., 2023; Wake, et al., 2024). Psychological safety was discussed by participants in terms of expectations, power dynamics, system messaging through policy, process, procedures, actions of university representatives, and the overall availability or knowledge of supportive services. The theme of psychological safety encompassed the ideas of expectations, contemplated congruence with authority including systemic messaging and power dynamics, and the perceptions students have of available supports including how they were notified of resources and corresponding policy, process and procedures. Expectations All nine participants discussed real or perceived expectations about the proper way to behave as a medical student, within medical school, or within the field of medicine. DISABILITY DISCLOSURE OF MSSD 66 Remy reported that the thing that makes me feel the most…unsupported…entering into a field that, you know, little [to] nothing about and are expected to be like the master of all of this knowledge…in the clinical culture it’s a little bit more stressed and a little bit more like you should know this and you should be confident in what you know. And, um, it's less about, like, individual and understanding that there are differences and that we all think in different ways and that we all need different things. It's more like you should be able to pull up a chart and tell me what diagnosis this patient has, which is the skill you need to have. But not necessarily everybody needs to ace [it] the first time, but I feel like you're expected to know everything and do great at everything when you're in medical school, cuz you are in medical school, you're like the smartest person in the room. Um, so it's difficult to step back and say like, no, I don't need to be the smartest person in the room right now. The culture that shows me that I need to be more logical and closed off about my feelings, um, is not always right. And this is not always the way I want medicine to be, but how do you even start changing that? Remy’s perception accounted for how the culture not only strives for but demands perfection of all practitioners while perpetuating stressful work environments (Burgess et al., 2020; Rumeysa et al., 2020; Ward, 2016; Westering et al., 2014). Further aligning with prior research conducted on the characterized expectations of extreme commitment to work, excessive workloads, unrealistic expectations, and the constant demand for perfectionism, Aspen described the day-to-day expectations stating, the amount of material is absurd…just like so much material. I didn’t have any idea how overwhelming it would be and like how the time I would feel like I…don’t have time to do the things I want to do like exercise, or like see friends, or make friends which has DISABILITY DISCLOSURE OF MSSD 67 been a real struggle. All the stress of that has like led to a [disability] flare [and] I have like had to go on steroids because of that. So yeah, a lot of challenges and I guess some real disability. Research conducted by The World Health Organization and The World Bank (2011) found increased negative attitudes towards individuals labeled with a disability which could impact disability disclosure decisions of participants who felt the need to meet a real or perceived perfectionistic standard. Additionally, four of the nine participants noted that they were required to sign off that they were able to meet the technical standard requirements set forth by the University they attended. Three of the four participants attended medium sized private institutions in the northeast, and one attended a large, public institution in the Midwest. Taylor commented feeling “somewhat offend[ed]” by the University requesting the sign off based on receiving accommodations, whereas Riley stated they fibbed when signing the form and hoped they “would meet them” given the standards made comments about “[one’s] ability to meet those technical standards” though they felt like they would meet the standards. Contemplated Congruence with Authority Medical school students are impacted by the language and policies of an institution including real or perceived elitism and power dynamics that may disadvantage members that do not represent the stereotype of a physician (Byron et al., 2005; Smith, 2015; Stergiopoulos et al., 2018). The stated and unstated messages students receive have significant influence on the culture (Taylor, 2003) and medical students with invisible disabilities contemplate if, when, and how they wish to take part in that culture based on their perceptions of the culture and the DISABILITY DISCLOSURE OF MSSD 68 organization. Participants' responses fell into two categories, systemic messaging and power dynamics. Systemic Messaging Bandura (1977) believed we are the product of everything within our environment. As messaging is a part of the culture of an organization, small changes can cultivate significant shifts in opinion and belonging (Niederdepee et al., 2023). The lived experience of medical students with invisible disabilities is impacted by the real or perceived systemic messaging of the institution as described by Sage, “I think there’s a lot of fear, especially in the medical community about being different in whatever aspect.” Meeks and Bullock (2024) state that disrupting the stereotype of a disabled person is key, and it is through sharing stories of students and clinicians with disabilities coupled with opportunities to work alongside physicians with disabilities that we dismantle stereotypes and stigma. Four of the nine participants, attending medium to large private institutions in either the northeast or the south, asserted that institutional discussions around marginalized populations including disability were limited in scope. The suggestion that representation empowers marginalized populations in the belief they too can study or work in a particular field successfully, as well as allowing colleagues to learn from the experiences of those marginalized populations (Beach & Segars, 2022), indicates that what we omit in our education is just as important as what we include. As in Critical Race Theory, the inherited culture of the dominant majority does not always include the voices of marginalized populations such as individuals with disabilities; it is through the shared stories of the lived experiences of the marginalized that cultural norms and values can be reimagined (Gillborn, 2015; Niederepee et al., 2003; Taylor, 2003). DISABILITY DISCLOSURE OF MSSD 69 Taylor expressed surprise at having an “entire month of just public health” but stated that “ability [was] not discussed… [and not] something that people necessarily talked about.” Riley further elaborated that disability talk in the “larger structural concepts [are not talked about]. They're in like sanitary curriculum talk. There are parts that are progressive in a sense, but some of those, many of those things were not mandatory or they were like small assignments”. All nine participants discussed the impact of faculty on disability disclosure decisions. The construction, or omission, of disability discussions formed the participant’s perceived culture of the organizations. Noah detailed one experience that he believed encompassed how disability was represented by lecturers in institutional discussions when he stated: an older psychiatrist was lecturing [and] talking about how he’s very reluctant to prescribe medication to people that he would diagnose with [ADHD] because he has some anecdote like oh, we could have some adolescent boy you know taking Adderall and popping it out of the capsule crushing it up and snorting it with his friends. …I thought this was a little bit ignorant to say to an entire lecture hall. Students who are one day going to become people with the prescribing power and giving to people and it’s like I understand there is potential for abuse with this drug, but it’s made for a reason, because it helps people. …If we are limiting access to people [who] need [it]...and there is stigma associated with it, then we are ultimately, you know we’re not helping as many people as we can, it just seemed like a perception or maybe even dated views. Though distinct in the way disability was represented, the relationship between the participant and those in their environment impacted the development of their social reality. Parallel to Noah’s perception of a faculty’s negative oration of disability, Blake found the lack of disability discussion to be similarly exclusionary. Blake stated she, DISABILITY DISCLOSURE OF MSSD 70 was surprised that there were very few, if any, disabled conversations like disability conversations within those efforts [of inclusivity]. So part of what my goal has been is to get the disability conversation started,...I think a lot of [the inclusivity discussions] have been focused so far on things like racial equity and socioeconomic status and like, undocumented status and things like that, which are all great. but there’s been very little representation of disability there. As the culture of an institution is cultivated by those within the system (Erez & Gati, 2004; Meeks & Jain, 2018), discussions that are omitted as well as topics that are discussed model the beliefs and values of the organization. The perceived or real ideologies and social conditions each impact the overall medical school environment and behaviors within the environment (Meeks & Jain, 2018) which is expected to be modeled by medical students as part of their professionalism competencies (LCME, 2011). Power Dynamics Erez and Gati (2004) stated that the purpose of education is the transfer of knowledge and values typically occurring through the social learning processes of modeling over time. The formal authority related to who controls resources and who creates the ideas and meaning making in the transfer of knowledge, displays the power differential and unequal status between a faculty, administrator, or preceptor and a medical student (McDonald et al., 2012). Harper shared an experience of a transfer of knowledge while working in a hospital with physicians providing insight into the medical school application and interview process stating: [the physicians] talked me through, okay, you need to ask these questions even when you’re interviewing there…and…you’ll be able to tell if the school is giving you the truth or not [around] the type of actual support they’re going to offer you. Because people say DISABILITY DISCLOSURE OF MSSD 71 a lot of things but that doesn’t mean it’s going to happen. So, I knew going in [not to share disability status] but I was very hesitant to do it because of the entire interview process [because] I had been told, under no circumstances [are] you to mention that you have a single flaw ever. You were not to say that you have a disability. You’re not to say you get accommodations. Never, never, never, never, never say it. And I was like Okay, that’s it. Quinn similarly stated the “atmosphere [is] very high[ly] competitive…they’re judging you and all of [the] small stuff…you really don’t want to give them any reason to know…to target you”. Noah, a third-year medical student, stated although he was never in the position to disclose that he did not think [he]’d be very comfortable just because there is a healthy sense of fear of retaliation, backlash, or misunderstanding, or just being treated in a way that’s not like, hey I’m just another student you know. … [disclosure is] a conversation I would veer away from…it’s all something you want to disclose…but anecdotally, whatever and just the culture of like being in medical school and being in postgraduate education it’s like uh don’t give administration any red flags or reasoning to think that you won’t be a successful student. …like the big letter that goes out for Residency programs from the school Dean saying this is our student and what we believe about them, you know were they good students, bad, or whatever. Though multiple students discussed the considerations of power dynamics in their disclosures, it is important to note that three students made supportive systemic messaging comments. Sage stated her choice of the medium, private institution in the northeast was due to DISABILITY DISCLOSURE OF MSSD 72 how “devoted the faculty [appeared] to be to their students,... [and how] everyone was collaborating, … [and] the administration was on top if it”. Comparably, Taylor commented on the “climate [being] supportive, collaborative, very humble, patient centered, and progressive”. The power dynamics in medical schools unveiled the student’s perceived agency, easement, and if or how they may act in specific situations based on their assessment of experienced disability discourse. Theme II: Perceptions of Available Support To receive support and accommodations, Universities require students to disclose and be proactive in the request process (Carey et al., 2014; Magnus & Tossebro, 2014) yet this study found an array of awareness in knowledge of services and required processes. Seven participants out of the nine mentioned learning about available services to a varying degree. Four participants stated there was at least one mention of accommodations and services as part of their orientation to medical school. Three participants mentioned learning about accommodations and services through a particular administrator such as a Dean. One participant mentioned having a disability service office provide information on services. The degree to which each participant recalled exposure to the notifications and information varied as did the general feelings related to the provided services. Notifications Blake stated she met with the disability accommodation people over the summer to talk about disability accommodations for classes and stuff. They were actually super helpful. …They didn’t require a lot of documentation…and they proposed a bunch of stuff that I hadn’t even thought of…they were super supportive. DISABILITY DISCLOSURE OF MSSD 73 The positive responses were echoed by Sage who described the Dean being a part of orientation and following up with an email that informed her of the steps that “lined up pretty easily of what needed to be done, and how to contact him directly with that information and how to set up a meeting to get [the accommodations] squared away”. Aspen had a different experience and stated that no information was shared” at her medium sized private institution in the northeast. Aspen further elaborated that her “perception of [the disability office] from what I’ve seen is very limited to test taking and scoring [services] rather than like, um, like disability services. …I’ve never heard of any disability accommodations for anything other than test taking, but I haven’t personally asked. Rose stated no information was shared…[and] accommodations all became pretty irrelevant. …I did mention at an accommodation meeting, [not knowing how to] navigate the whole [process], and I was kind of like brushed off in a way, like, oh, like we’ll talk about that when you get to clerkships, [which] is what I’m definitely worried about. Policy, Process, and Procedures A qualitative study by Meeks and Jain (2018) portrayed a lack of clear policies and procedures regarding the disclosure of disabilities. Additionally, student’s prior experience requesting accommodations played a significant role in future requests for accommodations (Mamboleo et al, 2020). Although six of the nine participants spoke of processes, procedures, and policies, three focused on more general medical school requirements such as the MCAT and overall application process for entrance as difficult, whereas three spoke positively about the process and procedures around requesting accommodations. DISABILITY DISCLOSURE OF MSSD 74 Taylor explained that her medium sized, private university in the northeast region, sent us a ton of emails, but one of them was essentially like, if you need accommodations like when an underlying condition, like go to this website. …and the website says, like email this email which goes straight to [the point person for accommodations]. These are the forms you have to send, and it was like, testing within the past three years, previous accommodations for any school accommodations that you’ve had, um, the original letter or something any past testing that you’ve had, … and [there] was a form to fill out. [The point person for accommodations], waited like a week, then…said you were approved by the committee…[sign off on] the technical standards…and you have the accommodations. …I didn’t have to do anything, they just set it up, and I just [went] where they [told me]. Sage further explained she experienced, schools in the past where it’s been difficult…getting accommodations And I think kind of going through it before, and knowing a little bit of what the process entails, and…what to know…obstacles might be jumping in my way, and having a better idea of how to get around them, and things like that, made it easier because I knew, ok, I’ve done this before, we’ll make it happen again, we’ll figure it out. The three participants who focused more on the overall medical school process and services, rather than disability, portrayed a sense of overwhelm and a lack of enthusiasm for disability disclosure. Taylor expressed that “the MCAT application process doesn’t set you up to like, reveal any sort of disability…because it might throw off your application”. Additionally, Remy discussed the services provided stating “[redacted name of office] never even considered…disability…if they don’t tell me how to file paperwork then there must not be DISABILITY DISCLOSURE OF MSSD 75 paperwork to file. There is no help”. Given that historical experiences play a significant role in future help seeking behaviors (Mamboleo et al., 2020) the experience of applying to medical school and the procedures required to receive support services could impact participants' willingness to focus on provided policies and procedures as well as on their follow through. Research Question 2: Internal Factors that Impact Disability Disclosure Research question two explored the participants’ perceptions of attitudes, culture and climate of themselves and the institutions they attend. A finding was determined when described by more than four of the nine participants. One theme emerged from the data. Theme: Ontology of Social Reality In social situations individuals are evaluating the environment, people, and available options. Individuals consider the boundaries and relationships between people, between people and the institutions, and even between different institutions (Andina, 2012). Trust Medical school students show a reluctance to disclose disability status citing concerns of medical and medical school culture, attitudes, and stigma as barriers (Dyrbye et al., 2015; Jain, 2020; Meeks et al., 2021; Meeks et al, 2019; Meeks & Jain, 2018). According to Meeks et al., (2019) despite the continued low disclosure rates, there is a positive increase of student disclosures from 2.7% to 4.6%. Participants in this study provided potential insight into the increased disclosure rates when discussing the ideas of trust and help-seeking behaviors. Seven of the nine participants discussed trust as a component of their disability disclosure decisions and comfortability. Aspen stated she DISABILITY DISCLOSURE OF MSSD 76 [hadn't] told any faculty about my specific experience with disability with the exception of…a professional responsibility section…[where] I think I felt very comfortable, because [during an insurance discussion]...where they read an article about a medical school applicant from early 2000’s…who was diagnosed with testicular cancer…and how hard it was for him and his family to pay for treatments…and it turned out that, like the guy who the story was written about was…a faculty…at [my school]. …And this made me feel like…it was kind of a place where you could talk about that kind of thing, which was good to know. …That specific class, it [felt] like a very welcoming environment. Remy also selectively disclosed stating Yeah, …rotations was a lot nicer and…the faculty was a lot more understanding ... .I even disclosed to one of my preceptors…and she was really understanding about [my disability]. …Whereas, if I was in medical school, I don’t, I wouldn’t feel comfortable telling my, my academic professors [about my disability],...like I feel like I’m just expected to [not be impacted] and if I [am] then it’s like, um, like a dock to my professionalism. Despite feelings of mistrust overall, Aspen and Remy both found individuals they did trust that led to disclosures. Despite the positive experiences that built trust in the environment, four of the seven participants spoke of experiences that negatively impacted their willingness to trust and therefore disclose to anyone. Riley commented that the lack of interactions prevent me from…disclosing. [The personableness of faculty impacts], like I also don’t want to call her not personable, because that’s not fully true, it’s just like there’s a lack of some sort of seeing us as more than students. Um, but seeing DISABILITY DISCLOSURE OF MSSD 77 us as more than just people who should do this like perfect, um, that makes me feel like [I’m] portraying weakness [if I disclose disability status]. Sage, commented that although I haven’t been super forthcoming with the accommodations piece, because I think that’s something that I do have fears about still of you know, maybe someone thinking that it’s not fair or not deserved and not necessarily wanting to have to navigate through that difficult situation [of disclosure of disability status]. As medical schools have a significant history with oppression and ableism (Jain, 2020; Meek, 2018) the constant evaluation of the culture of the medical school, and those within, determine the level of trust prescribed to the entity and its employees impacting medical students’ behaviors. Help-Seeking Behaviors Mamboleo et al., (2020) found that historical experiences with disability disclosure play a prominent role in future help-seeking behaviors. A historical ability to build trust and feel comfortable in disclosures can be a significant factor in future disclosures. Harper, who did disclose at a large public institution, stated she believed that she was pretty open, so I had been like, yea, so here’s the thing. I need some extra help… [and]...generally people are good, they’re just trying to help, …[but] my interaction with other staff, it can be like a hit or miss. …I think, I feel like [the interactions are] very focused on getting what they want and if they get what they want, they’re happy, and if they don’t get what they want, …if they get stressed out so much that they’ll like, take it out on you…like telling someone who’s anxious to just not be anxious is not helpful. It’s not. DISABILITY DISCLOSURE OF MSSD 78 Riley perceived their ability to receive help was limited, commenting, it felt just like useless after a point, because it’s just like, [no one has] engaged with [you] in a way that it feels like we’ve been properly like heard out in a sense. … [administrators become] a little less approachable to me because [of a prior negative interaction]. Interactions with administrators in the case of Sage, led to her selection of medical school. Sage stated that I think I have had, you know, schools in the past where it’s been difficult…getting accommodations and been through that. …one of the biggest turning points was when I was deciding between some schools, and I called to learn a little bit about their academic supports and the hoops that I may have to jump through to try and transfer my accommodations over, one school called [me back] in a couple of hours and spoke with me on the phone for thirty minutes to an hour about what would happen if I were to choose [them]. Despite the positive strides in disability disclosures in medical schools, this study’s participants depicted a continued reluctance to disclose and seek services to address disability related symptoms and needs in their education. Stigma The stigma experienced by people with disabilities can impact their willingness to disclose disability status and seek accommodations or support services (Argenyi, 2016; BarnardBrak et al., 2010, Magnus & Tossebro, 2014, Lindsay et al., 2018; Meeks et al., 2018; Meeks & Jain, 2018; Sniatecki et al., 2018, World Health Organization & The World Bank, 2011). Seven DISABILITY DISCLOSURE OF MSSD 79 of the nine participants stated the real or perceived stigma played a role in how comfortable they were disclosing disability status within their medical school. Harper stated there’s some obvious [thoughts about disclosing disability status] like I don’t know how people are going to react. I don’t want people to assume that I’m less than or less capable than. Or I don’t want it to affect things like getting a residency spot or getting a job. Because I think even though there’s been a lot of progress, I think there’s still a lot of judgment and stigma, and I think people are still very quick to be like, oh well, you can’t [be a doctor with your disability] and I just don’t think that’s true. Noah felt the need to err completely on the safe side [when it comes to disclosure]. That’s my business, and I’m just most comfortable and I feel the most safe keeping [my disability status to myself]. …Like there may not be understanding or this could be not the most helpful person to go to [with my disability or request for help]. …you might be called a word that is, you know, very derogatory when they may not even understand, like, why you’re struggling to keep up with the social uh cue expectations. Four of the nine participants discussed how willingness to disclose was based on the image they worried others would create after learning about their disability status. Riley stated they don’t “mention the diagnosis because [they believed] it gives a kind of image…but also just like [a] social currency” that needs to be considered. Taylor explained her hesitancy to disclose as “I can’t put out something that might hit somebody subconsciously… to be like this might be a more difficult student than the normal students, or this student might require more attention”. DISABILITY DISCLOSURE OF MSSD 80 Sage also commented that she had a “fear or well, they [might] think I’m incapable or incompetent… or maybe don’t deserve to be here [due to her disability]. Two additional participants mentioned concerns with the intersectionality of other claimed identities. Remy explained “I’m already not white, I’m already not a man, I’m already like a first generation American, I feel so outside of this culture already and then to step in and then say, oh, I also have a disability…makes me want to throw up”. Riley who also disclosed multiple marginalized identities, shared they felt “a lot of people are really well intentioned…but they’re kind of wholly oblivious to a lot of things that um don’t directly challenge them in terms of their privilege”. Although each participant shared a variety of impacts based on real or perceived stigma, each of the nine participants illustrated a concern of disclosing disability status due to the related stigma and generalized fear of potential impacts. Discrimination Medical schools have a notable and extensive history with oppression and ableism with medical school professionals serving as gatekeepers to the profession (Meeks, 2018; Meeks et al., 2018; Zazove et al., 2016). The fear of discrimination was mentioned by all nine participants in relation to either medical school staff, their peers, or future prospects in employment. Riley stated, “maybe [others] would be willing to learn [about disability], but I don't’ want to be the one to teach them, [I don’t want to waste] my social currency”. Blake shared two experiences that felt discriminating and left a lasting impact on her... The first with a peer when attending an art gallery where the peer viewed a painting of an amputee from World War I with a prosthetic and while discussing the peer stated, DISABILITY DISCLOSURE OF MSSD 81 I don’t think the word differently abled is a good word to use, which I was like, all right, I agree. And then he was like, differently abled if you have a disability. Like you’ll just never be able to do the thing that able bodied people are able to do. And I was like, whoa. We’re on different pages now. …like an able-bodied person will never be able to do what I do. I’m like, nope, you’re wrong, like we’re done. The second experience for Blake was during a class where a peer, was like, oh well, it’s great if doctors are in wheelchairs because like they’re always sitting, so they’re always on the patients level, and I was like, ok, it’s also great if doctors use wheelchairs because like, they’re probably good physicians and like they can relate to a lot of the things that the patients are going through like could an able bodied physician not just sit in a chair when they get in the room and like have the same effect…like, I don’t think the chair part is like what we’re after here. …like it’s a little tokenizing. Three participants stated concerns of disclosing but also believed they had no choice if they wanted to succeed. Aspen stated “I don’t care, I will find me. I don’t have any alternative. There’s no alternative [to disclosing]”. Taylor believed she also needed to disclose to succeed in medical school but took a different approach to Aspen stating “[that when waitlisted] there was a fear in the back of my head, like oh they are going to take [my acceptance] away…So I waited to like the last minute to [disclose].” Disclosure decisions were impacted as the feeling of otherness increased as participants were overtly or covertly questioned (Magnus & Tossebro, 2014) and as they faced microaggressions or macroaggressions that were fueled by outdated or distorted assumptions about disability (Davidson et al., 2016; Jain, 2020; Magnus & Tossebro, 2014; Meeks et al., DISABILITY DISCLOSURE OF MSSD 82 2018; Meeks & Jain, 2018). The stigma and discrimination whether observed or experienced as the target heavily influenced disability disclosures. Summary The purpose of this qualitative study was to examine the factors that influence the willingness of allopathic medical school students with invisible disabilities to disclose, or not, disability status. As the recruitment of current medical school students with invisible disabilities who had elected to not disclose was difficult to recruit due to their hidden status, the study’s participant pool was expanded to include allopathic medical school students with invisible disabilities who did disclose to a minimum of one employee of the medical school. Despite the change in participant criteria, it was discovered that those who elected to disclose experienced similar barriers and had similar fears, to those who chose to not disclose disability status. Two research questions were developed and explored using a semi-structured interview with nine participants currently enrolled in an allopathic medical school within the United States of America. Research question one queried what systemic barriers exist in medical schools as institutions, and those within the institutions, that influenced disability disclosure decisions of students. Two themes emerged throughout the interview process. Theme one of psychological safety uncovered two sub-themes of expectations and contemplated congruence with authority. The sub-theme of contemplated congruence with authority included ideas of systemic messaging and power dynamics. Theme two, the perceptions of available support, revealed two sub-themes of notifications and policy, process, and procedures. Research question two sought to understand what internal factors, if any, impacted the willingness of students to disclose disability status. The ontology of social reality emerged as an DISABILITY DISCLOSURE OF MSSD 83 overarching theme with four sub-themes including trust, help-seeking behaviors, stigma, and discrimination. Chapter five contains a discussion of the findings, recommendations based on research, the limitations and delimitations of the study, and suggestions for future research. CHAPTER FIVE Chapter five presents the discussion and recommendations based on the findings presented in Chapter Four. This chapter begins with a discussion of the findings, including a realignment with the existing literature, leading to evidence based recommendations, followed by a recommendation for future research and the conclusion of this study. Discussion of Findings The objective of this study was to explore the willingness of allopathic medical school students with invisible disabilities to disclose disability status based on how they perceived the medical school environment and the actions of those within the environment. Conducted through the lens of Albert Bandura’s (1977) Social Cognitive Theory (SCT), this research study was interested in understanding how the witnessed and experienced interactions between employees of the medical school and student peers along with environment factors such as the behaviors, established norms, policies, procedures, and standards create a culture that impacts a Medical School Student with Disabilities (MSSD) decision to disclose disability status. The enduring problem of MSSD’s lack of disclosure impacts the equitable access and opportunity to become a productive member who fully engages in the benefits of society while simultaneously giving back to the communities they serve through the provision of increased empathy, heightened awareness of the effect of disability, and the increased attention they provide to their future patients (DeLisa & Thomas, 2004; McKee et al., 2018; Wehman, 2011). DISABILITY DISCLOSURE OF MSSD 84 Furthermore, MSSD’s positively increase understanding and attitudes of peers regarding disability throughout their medical education (Meeks et al., 2018; Sarimento et al., 2016). The benefit of establishing medical school and medical culture that supports individuals with disabilities in disclosure includes long-term economic benefits to both the physician with a disability and the communities they serve (Baum & Steele, 2017; The American Medical Association, 2018) while concurrently increasing their own, and others with disabilities, social capital and feelings of belonging (Simplican et al, 2015; Wehman, 2011; Werner & Hochman, 2018). The research study provided data regarding disability disclosure decisions from nine participants, with invisible disabilities currently attending, five distinct allopathic medical schools within the United States of America. Through the exploration of barriers and factors that impact disability disclosure decisions of allopathic medical school students, this study supported prior research findings related to the reluctance to disclose citing medical school culture, real or perceived attitudes, fear of stigma and discrimination, and perceptions of available supports and services. Lack of Psychological Safety as a Deterrent to Disability Disclosure Prior research showed that administrators of medical schools were aware of less than 1% of students in their programs with disabilities (Waliany, 2016) and despite an increase in disclosures from 2.7% to 4.6% between 2016 and 2019 (Meeks et al., 2019) there is still reluctance to disclose disability status. Smith (2015) portrayed medical culture as ambiguous, filled with unstated norms and expectations, influencing those already in the field of medicine and those entering. The medical field, and medical education, known for their extreme expectations, stressful environments, and perfectionistic tendencies defined by those in authority DISABILITY DISCLOSURE OF MSSD 85 (Burgess et al., 2020; Rumeysa et al., 2020; Ward, 2016) was reinforced by the participants who found the field to be filled with unrealistic expectations defined and fortified by those in authority as part of the medical school culture. Though not termed as such, all nine participants discussed the concept of psychological safety in their disability disclosure decisions. The participant’s perceived necessity of perfection and viewing disability as a weakness not to be revealed added to the sense of unrealistic expectations. Further complicating disability disclosure decisions was the indoctrination to medical culture through unstated norms and expectations established by those already within the medical education and field. An established them versus us mentality and othering (Burgess et al., 2020) was then perpetuated by the participants as they aligned with real or perceived authority within the organization based on perceived systemic messaging of what is acceptable in contrast with what should remain hidden to maintain one’s identified elite status as a medical student and future practitioner. As one participant pointed out, disabilities affect more people than we think, yet all participants mentioned a significant fear related to disability disclosure and retaliation; many of whom stated they were warned to not share disability status by those already practicing in the medical field as it may provide a reason to be viewed differently than their peers. Students perceived agency in disability disclosure decisions related to their view of the existing power dynamics and the observed behaviors of administration within their highly competitive schooling. Three participants discussed positive experiences with those deemed in power citing collaboration, faculty devotion to student success, and progressive faculty in supportive climates. In the case of the three participants, the real or perceived culture witnessed led to a feeling of support that allowed for disability disclosures to occur without fear. DISABILITY DISCLOSURE OF MSSD 86 Contrasting the positive experiences, most participants acknowledged that disclosures were fraught with fear of retaliation, misunderstandings, or loss of opportunities including the Residency program letters of support. A previous qualitative study conducted by Lalvani (2015) found that despite many teachers believing that stigma is not associated with disability, over 83% of the teachers in the study did believe that students with disabilities required drastic shifts in teaching methods for learning to occur. The formal authority of faculty and administrators, as those who control resources, opportunities and the overall transfer of knowledge presents a power differential (McDonald et al., 2012) that participants felt could intentionally or unintentionally impact their future trajectory if viewed unfavorably due to a disability disclosure. Meeks and Jain (2018) in a separate qualitative study found that pervasive negative perceptions or personal beliefs often focus on a person’s disability rather than their ability and other valued characteristics. Together, the historical research finding biases in how individuals, including teachers, perceive disabilities along with the stated fears of this study’s participants show a heightened concern of being labeled as disabled which would increase negative attitudes, consciously or unconsciously, of the formal authority that holds discernible power of the trajectory of their educational opportunities and future careers. Perceptions of Available Support as a Deterrent to Disability Disclosure Historical experiences in disclosure of disability also impacted the perception of available services (Mamboleo et al., 2020) often becoming deterrents to future disclosures based on general awareness of whom to disclose to and the real or perceived difficulty of the disclosure process (Carey et al., 2014; Magnus & Tossebro, 2014; Meeks & Jain, 2018). The shift in laws from secondary to post-secondary and tertiary education requires that students must be proactive in their request for accommodations; requiring students to disclose DISABILITY DISCLOSURE OF MSSD 87 and prove disability status through formal documentation (Carey et al., 2014; Manus & Tossebro, 2014). Students must also actively engage in the interactive process as part of the accommodation request process (Carey et al., 2014; Meeks & Jain, 2018). The requested documentation can be a deterrent due to the significant financial burden associated with expensive testing and medical appointments (Magnus & Tossebro, 2014) along with the timeconsuming nature of testing itself. The mandated processes and procedures can vary by university, including involvement from different administrators within different departments. Seven of the nine participants noted learning about available services to varying degrees through different methods. Three participants learned about services and disability disclosure processes through particular administrators such as a Dean whereas one participant learned of services directly through a disability service office. Most participants stated they did not recall hearing about disability accommodations and services outside of perhaps a brief mention at orientation. Most participants that mentioned an orientation elaborated that their orientations were packed with so much information, in a short duration, that they were unable to keep track of what was shared. These findings were supported by most participants in this study who stated that minimal or no information was shared about the disclosure process at any point; though it is important to note that two participants had positive experiences stating that their schools made the disclosure process clear and streamlined. Further exacerbating the issue of awareness of services, most participants believed that there were not accommodations that could assist with their symptomology and disability. One participant commented that accommodations all became irrelevant at this level of education. Research by Meeks and Jain (2018) found that many students felt a significant disconnect between the disability service offices that grant DISABILITY DISCLOSURE OF MSSD 88 accommodations and the medical school staff that implement the approved accommodations. Some participants stated that typical accommodations of extended time and a separate testing environment, though beneficial, were less necessary in medical school. Instead, they worried about accommodations in clinical rotations while believing that such accommodations may not even exist. Additionally, participants worried that the provision of accommodations would lead to perceptions of incompetence or inability in the practice. Supporting the participants beliefs, prior research found negative attitudes towards students with disabilities receiving accommodations including, but not limited to, increased suspicion regarding disability status and deservingness of participating in the education, concerns of unfair advantages due to accommodations received, and overarching fears of the loss of academic integrity among the medical school personnel (Magnus & Tossebro, 2014; Sniatecki et al., 2018; Stergiopoulos et al., 2018). Finally, six of the nine participants spoke directly to the impact of policies and procedures as they relate to disability disclosures. Three participants spoke positively of their university's practices in disability disclosure stating that the websites clearly outlined where to go, what to submit, and whom to contact to start the process of requesting accommodations. Multiple participants stated that they had historical experiences with requesting accommodations in their undergraduate education which influenced their understanding of the process and potential obstacles they might encounter if they elected to seek accommodations in medical school adding to their feeling of self-efficacy in the process. However, the recentness of disability status for one participant led to their feeling that if no other office or University personnel is telling them how to apply for accommodations and what documentation to submit then no process or documentation requirements must exist, meaning participants believed there DISABILITY DISCLOSURE OF MSSD 89 was no help available. Meeks and Jain’s (2018) research supported this participants' experience stating that for many individuals with disabilities maneuvering through the process of gaining access to accommodations became a barrier in and of itself. The inconsistencies in processes along with previous disclosure experiences, and the first-hand exposure to disconnects between the offices that grant accommodations and those that implement accommodations complicate disability disclosure decisions. Selective disclosures are endemic in medical schooling and are usually done only after careful consideration and an extensive cost-benefit analysis of potential outcomes (Jain, 2020). The Ontology of Social Reality as a Deterrent to Disability Disclosure Extensive prior research found that attitudes and stigma experienced by people with disabilities can impact their desire to disclose and seek accommodations and support services (Argenyi, 2016; Barnard-Brak et al., 2010; Magnus & Tossebro, 2014; Lindsay et al., 2018; Meeks et al., 2018; Meeks & Jain, 2018; Sniatecki et al., 2018; World Health Organization & The World Bank, 2011). Findings from this study indicate that students continue to feel unsafe and still worry about how people will react to a disability disclosure for fear of being perceived as less competent or capable than their peers. Bandura (1977) believed that the interaction of individuals, behavior, and environment impact an individual's cognitive processes and perceptions. Furthermore, Bandura believed that it is not only through direct experiences, but also through vicarious exposure that individuals learn about their environments and the expectations contained within. The experienced and vicariously lived experiences aid in the development of the ontology of one’s social reality. All nine participants discussed the impact of faculty messaging on their willingness to disclose disability status. This study’s participants continued to state that systemic messaging DISABILITY DISCLOSURE OF MSSD 90 within medical education consisted of either outdated discussions around the perception of disabilities or a complete lack of disability discussion despite diversity and inclusion efforts. Seven of the nine participants stated that real or perceived stigma played a crucial role in how comfortable they were disclosing disability status. Such disclosures supported prior research that stated disrupting the stereotype of a disabled person is key and we can disrupt long-standing patterns of stigmatizing marginalized populations by including their voices to reimagine the norms and values of our institutions that maintain inequitable power dynamics (Meeks & Bullock, 2024; Beach & Segars, 2022; Gillborn, 2015; Niederepee et al., 2003; Taylor, 2003). The concept of learning through direct experience as well as through observation, imitation, and modeling within one’s environment (Bandura, 2019) supports the notion that in social situations individuals are evaluating their environment, the people within the environment, the relationships between people and between people and their environment in the creation of their social reality (Andina, 2012). Bandura’s social cognitive theory portrays the reciprocal interaction in the creation of one’s social reality as supported by critical disability theory that states disability is a construct developed by society and is maintained by how individuals view their impairment in relation to their environment (Hosking, 2008). Participants' willingness to disclose disability status continues to rely upon the real and perceived dynamics that are created through the interaction of the culture of medical schools, the behaviors of those within medical schools, and the perceptions of the medical school culture and behaviors of both authority figures and peers that are created by medical school students with disabilities. In the constructed environment of a medical school, the individual MSSD’s perceptions of medical school personnel’s behaviors, instruction, norms, and overall culture are factors that allow the MSSD to construct a view of social norms, constructs, and social conditions that depict real or perceived DISABILITY DISCLOSURE OF MSSD 91 values that impact their beliefs, self-efficacy, advocacy, and cognitions around the decision to disclose disability status. Recommendations for Practice The identified problem of practice was to examine the reluctance of medical school students to disclose disability status in allopathic medical schools. Findings from this study revealed participants, regardless of disclosure status, believed they continued to face barriers that impede disability disclosures including a medical school culture that excludes disability as a component of diversity, equity, and inclusion work as well as a culture that supports unrealistic expectations, perfectionism, and othering that can be perpetuated through power dynamics. The findings provide actionable recommendations for allopathic medical school administration and disability service providers to create a more inclusive culture where disability disclosures are supported and encouraged Recommendation 1: Reduce disability bias through disability diversity training and education of university personnel Medical schools have a long-standing history of oppression and ableism with medical school professionals serving as the gatekeepers to the medical profession (Meeks, 2018; Meeks et al., 2018; Zazove et al., 2016). Learned through traditional medical schooling, the average health care providers approach to treatment is grounded in the medical model of disability, which emphasizes disability as a flaw inherent in people necessitating a diagnosis and intervention plan to aid the abnormality to more easily integrate into society (Dirth & Branscombe, 2017; Fisher & Godley, 2007; Phillips et al., 2021; Shyman, 2016). Phillips et al., (2021) states that helping providers to reevaluate their attitudes about disability can improve overall patient care. Ableism, portrayed by medical school personnel, can manifest in a standard negative labeling of DISABILITY DISCLOSURE OF MSSD 92 individuals with disabilities based on perceived norms and the othering of anyone who does not fit the defined norm (Friedman et al., 2024). VanPuymbrouck et al. (2020) found that despite most providers self-reporting no biases against people with disabilities implicitly, the overwhelming majority of providers were in fact biased. Supporting prior studies around medical provider disability biases, participants in this study shared concerns of faculty who shared outdated views of disability and questioned the validity of invisible disabilities along with the need for accommodations, as well as a general fear of medical personnel generating an image of incompetence based on discovering disability status. Participants shared that how disability within clinical settings is discussed via the clinical medical pathological way doesn’t help the willingness of [those with disabilities] in wanting to disclose disability status. Physicians and medical students report being unprepared and uneducated on disabilities and working with people with disabilities (Keller, 2022). Meeks and Jain (2018) found that providing professional development training for faculty and staff on topics such as communication with and about persons with disabilities as well as principles of disabilities and accommodations from a social model perspective are pragmatic ways to improve medical school personnels views of people with disabilities. Furthermore, educating medical personnel on disability, accommodations, disability etiquette and language allows personnel to better plan for students with disabilities and creates professionals who better understand disability thereby providing more culturally competent care to those with disabilities (DeLisa & Thomas, 2004; McKee, et al., 2016; Meeks & Jain, 2018; Meeks, et al., 2018; Ordway et al., 2019; & World Health Organization & The World Bank., 2011). DISABILITY DISCLOSURE OF MSSD 93 To combat the prevalence of misinformation and prejudice about disability that is perpetuated by medical practitioners (DeLisa & Thomas, 2004; Iezzoni, 2016; Kirmayer, 2013), it is recommended that allopathic medical schools include mandated disability training specific to medical school personnel that includes a general overview of disabilities, disability etiquette, general accommodation information including the University’s process for requesting accommodations as well as available University services, and appropriate communication with and about persons with disabilities to reduce potential biases regarding medical students with disabilities. Recommendation 2: Establish a comprehensive DEI program that includes disability Despite the launching of the American Medical Association's Center for Health Equity that aimed to equip all medical personnel and trainees to eliminate health inequities, improve health outcomes by closing disparate gaps rooted in historical and contemporary injustices and discrimination (Sierra & Tutty, 2019) disability was often not included in the DEI efforts. The Liaison Committee on Medical Education, or LCME, (2016) furthermore required medical schools to develop programs or partnerships that broaden diversity among qualified applications along with the production of policies, procedures, and practices that actively encourage ongoing, systemic, and focused efforts to attract and retain students and personnel from diverse backgrounds to medical schools. Yet the inclusion of disability is often overlooked in the diversity, equity and inclusion programs (Feldner et al., 2022). Meeks and Jain (2018) believe the omission of disability in diversity training is a missed opportunity to have a positive effect on medical schooling, the medical community, and the overall healthcare of individuals with disabilities. DISABILITY DISCLOSURE OF MSSD 94 Participants in this study reinforced the lack of disability as a part of DEI efforts within their medical schools. Multiple participants commented on the implementation of significant DEI programs and expressed surprise at the length and inclusion of DEI efforts within the curriculum. However, the same participants expressed feeling discouraged that ability was not a discussion topic throughout the DEI programming. When disability was discussed, it was often a side conversation in non-mandated discussion groups initiated by students or was a side lecture where disability was portrayed negatively and perhaps the lecturer used outdated views which participants believed perpetuated obsolete views of disability among their peers. To promote diversity and inclusion, it is recommended that allopathic medical schools expand their currently existing DEI programs to include disability. Evaluate the current curriculum to determine at what level disability is currently discussed and in what methods. Reflect on existing best practices in disability and make systematic changes to the medical student’s education by including disability etiquette and shifting how disability is portrayed in case studies, clinical rotations, and medical discussions to ensure communications are respectful to persons with disabilities. Meeks and Jain (2018) further expand that diversity initiatives, efforts and language must include disability as an aspect of diversity valued by the school, that schools must include disability diversity trainings for students, take the time to identify trends in staffing and students with disabilities as part of their gathered metrics to aid in future improvements around diversity efforts, spend time developing strong recruitment and retention strategies around people with disabilities, develop campus programming that includes medical professionals with a variety of disabilities as well as honors disability culture from a social justice perspective, and in general create an environment where disabilities are acknowledged, respected, and supported. DISABILITY DISCLOSURE OF MSSD 95 Recommendation 3: Reduce student’s negative perceptions related to requirements of disability disclosure and accommodation processes through transparent information sharing Multiple prior published researchers found that the process of accessing accommodations often became a barrier (Barnard-Brak et al., 2020; Carey et al., 2014; Dell, 2013; Magnus & Tossebro, 2014; Mamboleo et al., 2020; Meeks & Jain, 2018). Meeks & Jain (2018) found many medical schools did not have clear policies or procedures in place regarding how to disclose disability status. Moreover, each medical school may also differ in the process of disclosing and accessing accommodations (Association on Higher Education and Disability, 2021). Processes can often be confusing, time consuming, and sometimes costly (Magnus & Tossebro, 2014). Further exacerbating the problem of disability disclosure is the individual student’s historical experiences with disability disclosure, especially when negative, that impacted their willingness to seek help in the future (Mamboleo et al., 2020). Lindsey et al. (2018) found that some students with disabilities believed that seeking and receiving accommodations gave them an unfair advantage over their non-disabled peers and felt inferior or less capable than their peers if they utilized the granted accommodations. In this study seven of nine participants discussed their perceptions of available support. Most participants stated they learned of services to a varying degree and in varying methods. In some cases, disability services were mentioned in orientation, whereas in other cases an email was sent that included multiple components and one component was on disability services. In other cases, participants had to seek information regarding disability services through contacting particular administrators. Additionally, six of the nine participants described different processes, procedures, and policies. Three of these participants explained that their historical experiences in DISABILITY DISCLOSURE OF MSSD 96 seeking accommodations helped to prepare them for the potential obstacles they may face when seeking accommodations in medical school and how to navigate around such obstacles. Six participants discussed seeking accommodations for the MCAT and how difficult the process was along with added fears that through disclosing on the MCAT it may throw off their application. The process of applying for MCAT accommodations was portrayed as negative and therefore, for some participants it became another anecdotal data point to consider in future accommodation disclosures. One participant discussed that their schools support services never mentioned a disability office even when they were academically struggling and they therefore believed that no such services existed. Contrary to most participants, one outlier stated their university’s website offered clear guidance on how to apply for accommodations and what paperwork would be required which made it very easy for her to seek accommodations in a streamlined manner. The propensity of negative associations increases based on an individual’s prior experiences seeking disability related accommodations. Additionally, the need to understand what each medical school’s disability office would require when requesting accommodations also increases negative associations. Given the susceptibility of MSSDs to garner negative associations around disability disclosures, it is recommended that university’s take a four pronged approach to informing students of disability accommodation policies, procedures and required documentation by, 1) clearly outline their disability accommodation policy, procedures, and necessary documentation on the disability office website, 2) link the disability service office website as a resource within medical school support services links, 3) provide a designated time during orientation to clearly outline the policy, procedures, and required documentation and 4) DISABILITY DISCLOSURE OF MSSD 97 provide an email communication that is separate and distinct from other content that medical schools are sharing with incoming students. The ability for students who may be seeking accommodation to easily find how to disclose disability status and seek accommodations is necessary in destigmatizing the process and reducing the negative perception of many students that seeking accommodations will be difficult based on past experiences. Furthermore, the more easily disability disclosure information is located, the more students perceive a more inclusive environment. Meeks and Jain’s (2018) study supported this finding when stating that when the ease of accessing accommodations was normalized, students were more willing to disclose and seek accommodations and the student’s overall willingness in the process was greatly enhanced. Limitations and Delimitations Limitations are weaknesses in a study and potentially the research design that impacts the final conclusions but are outside of my control (Ross & Zaidi, 2019; Theofanidis & Fountouki, 2019). Theofanidis and Fountouki (2019) explain that delimitations are limitations to the study created by the researcher themselves and often require explanation as to why a specific action was not taken. In this study the following limitations and delimitations are known to the researcher: Limitations ● Time to complete this dissertation study was a limitation that has led to a delimitation of a small sample size. ● The recruitment process required access to medical school students and more importantly those with invisible disabilities. A limitation existed in accessing medical school students as University’s must protect the identification of all students. This DISABILITY DISCLOSURE OF MSSD 98 required me to rely on the heads of curriculum to send out a recruitment email and survey link which many did not do on my behalf. To mitigate this concern, I contacted the heads of curriculum at all 172 allopathic medical schools in the U.S. Additionally, I contacted two Facebook groups to allow for self-selection into the study. It must be noted that the selection of medical school students with invisible disabilities is a delimitation in and of itself. However, the difficulty of obtaining access to this population leaves a significant gap in the research regarding disability disclosure decisions that I wished to reduce through this study. The sample size of 12 to 15 proved too difficult to recruit, therefore I reverted to including medical school students with invisible disabilities who elected to disclose where I could explore the barriers and factors that impacted their willingness to disclose disability status. ● Furthermore, medical school students who have not disclosed disability status need to elect to disclose disability status to the researcher in the recruitment survey, which in some cases may go against their preference to remain anonymous. To mitigate this concern, confidentiality was explained in both the recruitment email and the social media posts. ● Social desirability may or may not impact the transparency and/or honesty of the selfreport in both the recruitment survey and the interviews themselves. Attempts to reduce social desirability in the recruitment survey include ensuring the Qualtrics ® settings allow for anonymity. Moreover, the survey used skip logic to allow for prospective participants to avoid answering more sensitive questions regarding disability should they not meet basic qualifying criteria. Furthermore, participants were asked to opt into the survey and then additionally provide their contact DISABILITY DISCLOSURE OF MSSD 99 information of name and email address. A follow up email was sent to those who provided contact information allowing another opportunity to opt in or out of the study and provide each with the Information Sheet for Non-Medical Research outlining confidentiality. The researcher took the time in the interviews to build rapport with each participant to aid in increasing transparency and honesty among participants. Interview questions were loosely ordered to allow for basic demographics and general questions about their interest in medical school prior to delving into more sensitive questions regarding disability status. ● Non-responsiveness when member checking two participants became a limitation, as I was unable to verify accuracy in interpretation for one participant and did not receive a response to follow up questions for a second participant. Delimitations ● The sample size of nine medical school students with invisible disabilities does not allow for generalizability and conclusions are only suggestive in nature. To offset this limitation, all findings were localized to the population studied and aligned with existing literature where possible. ● Lacking a pilot test for both the brief recruitment survey and more importantly the interview protocol could lead to issues with the recruitment of participants and the data collected during the interview phase. To address these concerns, I have utilized information learned in the Inquiry series to develop the recruitment survey and interview protocol. Additionally, the researcher recorded interviews and had a third party (Rev.com) transcribe the interviews to provide me with a document that can then be used to member check as needed. DISABILITY DISCLOSURE OF MSSD 100 ● I have worked in the field of disability for over twenty years serving students with disabilities including those in the medical field. I may have preconceived notions and biases that are dormant or unknown to the researcher. To combat this limitation, I provided a description of the researcher and my ethics below. Additionally, I kept a journal of thoughts, reactions, and assumptions to be included with the standard detailing of the steps taken in the study, data collection, and data analysis. Finally, I planned to use member checking both within the interview through asking for accuracy of interpretations and post-interview by providing the transcript to participants as needed to clarify interpretations. Throughout the process, I only member checked during the interview. Although limitations and delimitations may not be avoided, I have attempted to reduce or eliminate limitations and delimitations where possible. Recommendations for Future Research Throughout this study, the limitations and delimitations became apparent. I believe further research is necessary given the low number of participants that met the initial criteria of invisible disabilities that elected to not disclose; students with invisible disabilities that elect to not disclose disability status remain a population that is under-researched. Without further research on this population, we lack the understanding of if and how medical schools can aid in assisting students with invisible disabilities that elect to not disclose. Previous research stated an ongoing concern with organic technical standards. However, the participants in this study all claimed to not find technical standards relevant in their decision making. Understanding if medical schools have moved away from organic technical standards towards functional technical standards, if medical schools are not discussing technical standards DISABILITY DISCLOSURE OF MSSD 101 in a time frame that would impact decision making, or if students no longer consider technical standards as a decision point would help the community understand if technical standards continue to be an area of concern for students with invisible disabilities or if this is a moot consideration. Finally, this study primarily drew participants who were in their first year of study (M1) with one outlier, who represented a third year (M3) who did have more negative experiences around disability to draw upon. Many of the first-year participants stated feeling guilty at participating, due to not having as many negative experiences and believing that they were outliers due to their positive experiences with their medical schools. Some participants mentioned wishing the study were conducted when they were potentially a second (M2) or third (M3) year medical student as they would have more experiences to draw upon. Further research in the area of how first year (M1) students perceive disability disclosures compared to more seasoned medical students (M2 and M3) may provide insights into medical school culture created by the behaviors and statements of medical school personnel within the medical school environment. Conclusion As the enrollment of medical schools increases, the number of students with invisible disabilities is expected to rise (Dyrbye et al., 2015; Meeks et al., 2021; Meeks & Jain, 2018; Orlowski et al, 2018). This study sought to understand the willingness of allopathic medical school students with invisible disabilities to disclose disability status by examining the individual and environmental factors that impacted their end behavior of disclosure. The qualitative data gathered allowed me to examine the factors related to disability disclosure decisions as well as the perceptions of individual participants on the disability disclosure process itself. DISABILITY DISCLOSURE OF MSSD 102 The interview findings revealed the significance of psychological safety in the disclosure process showing participants were impacted by real and perceived expectations. The analysis found that participants were influenced by systemic messaging of medical school personnel and peers, real or perceived power dynamics and their own perceptions of the available support. Finally, the results of this study portrayed that trust impacts help seeking behaviors in coordination with real or perceived stigma and discrimination aid in the development of one’s ontology of social reality. The implications of the findings indicate that students with invisible disabilities are disclosing in medical schools at higher rates than historically stated and DEI efforts have improved. However, the medical field and medical school culture still pose a risk to the American Medical Association’s and the Liaison Committee to Medical Education’s desire for cultivating diversity as they do not yet unequivocally include disability status as a part of DEI efforts. The recommendations provided begin to address the concerns set forth by those in this study, and of many participants in prior research, by addressing the need to educate medical school personnel on disability, include disability as a part of DEI efforts, and outlining the disability disclosure process and requirements in a more public and transparent manner. It is through the systematic dismantling of barriers that impede disability disclosure decisions that we allow equitable access to students with disabilities in our medical schools, increase the diversity of our medical field overall, and improve the comprehensive care of patients within the communities they serve. DISABILITY DISCLOSURE OF MSSD 103 References Albrecht, G.L., Seelman, K.D., Bury, M. (2001). The handbook of disabilities studies. Thousand Oaks: Sage Publications. American Association of Colleges of Osteopathic Medicine. (2019). 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(2016). A door must be opened: Perceptions of students with disabilities in higher education. International Journal of Disability, Development, and Education, 63(3), 384-394. Zazove, P., Case, B., Moreland, C., Plegue, M.A., Hoekstra, A., Ouellette, A. et al. (2016). U.S. medical Schools’ compliance with the Americans with Disabilities Act: Findings from a national study. Acad Med., 9(17), 979-986. DISABILITY DISCLOSURE OF MSSD 119 Appendix A Qualtrics ® Recruitment Survey Purpose: The following questions are meant to ensure participants meet required participation criteria for the qualitative study. Introduction: As a doctoral student at the University of Southern California, I am seeking current medical school students with invisible disabilities to take part in this three (3) minute survey. The purpose of this survey is to recruit eligible participants to a qualitative research study for a dissertation. Your participation is voluntary and responses are confidential. No personally identifiable information will be associated with any summary reports. Instructions: please select the answer(s) the best describe you and your experience. Question Type Level of Measureme nt Response Options RQ Are you a current student in medical school? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Is your medical school in the United States? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Upon graduation will you be conferred a Medical Degree (MD) or a Doctor of Osteopathic Medicine Degree Criteria Nominal Medical Degree (MD) Doctor of Osteopathic Medicine Degree (DO) Other: Criteria (an answer of B or C will exclude DISABILITY DISCLOSURE OF MSSD 120 (D.O.) particip ants from the study) Do you have a disability as defined by the Americans with Disabilities Act (ADA)? Criteria Nominal Yes No I do not know Criteria (an answer of B or C will exclude particip ants from the study) Which category/categories of disability do you identify with (select all that apply): Criteria Nominal (category) Cognitive Learning Disability (LD) Physical/Mobility Medical Blind/Low Vision (BLV) Deaf/Hard of Hearing (DHH) Psychological-Anxiety and/or Depression Psychological -Other: Other: Criteria (Some disabilit y categori es may be eliminat ed immedi ately if disabilit y is conside red visible or difficult to hide from others) Would you characterize any of your selected disabilities as invisible (i.e. not readily identifiable to clothes)? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the DISABILITY DISCLOSURE OF MSSD 121 study) Have you formally disclosed your disability status to the University’s Disability Office? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Have you formally disclosed your disability status to employees of your medical school? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Are you willing to participate in a confidential interview regarding your experiences as a medical school student with a disability? Criteria Nominal Yes No Maybe, I would like to communicate with the researcher first before deciding. Criteria (an answer of B will exclude particip ants from the study.) If willing to participate in a confidential interview, please provide: Open N/A Name (you may use a pseudonym if preferred) Email address Require d for continu ed commu nication re: particip ation in the study To allow for your full participation, will you need any Nominal Yes No Unsure Allow for plannin DISABILITY DISCLOSURE OF MSSD 122 accommodations during the interview process? g of accessib le intervie ws. What, if any, accommodations will you need to fully participate in the interview process? Open N/A Provide large text box Allows for plannin g of accessib le intervie ws. Thank you for your participation. Your responses have been recorded. Individuals who meet recruitment criteria and have provided their contact information will be contacted by the researcher via email within 48 hours. DISABILITY DISCLOSURE OF MSSD 123 Appendix B Email to Qualtrics ® Recruitment Survey Respondents Wishing to Participate in Interviews Subject: Interview Request: Medical School Students Research Study at the University of Southern California Dear <insert name>, Thank you for participating in the brief survey regarding the disclosure decisions of medical school students with disabilities. As part of my dissertation, I am conducting interviews to better understand the lived experiences and disclosure decisions of medical school students with disabilities. Based on your survey responses, you are an ideal candidate to take part in this qualitative research study. The interview is estimated to take 90 minutes and is informal in nature. I am attempting to capture your experiences, thoughts, and perspectives on the disclosure of disability status while in medical school. Your responses to the questions are confidential. Pseudonyms will be assigned to each interviewee to ensure that personal identifiers are not revealed during the write up of findings. There is no compensation for participating in this study. However, your participation is a valuable contribution to the research of disability disclosure decisions in medical school education. Your participation is completely voluntary and you may withdraw from the study at any time. Next Steps: 1. If you are willing to continue your participation after reviewing the attached Information Sheet please provide a few days and time frames that suit your schedule and I will do my best to schedule our interview at a time you find convenient. All interviews will be conducted utilizing the Zoom ® platform and I will send a calendar invitation confirming our scheduled interview time. 2. In addition to providing a few days and time frames for an interview, please take a moment in your response to verify the following background information: a. Would you please share your gender and preferred pronouns? b. Please provide your age. c. What ethnicity/ethnicities do you most identify? d. What is your current geographic location (state/city or town)? e. What medical school do you currently attend? f. What year are you in medical school? g. Have you started your clinical rotations/placements? If yes, which rotations/placements have you completed? h. Do you consider yourself an individual with a disability as defined by the ADA? If yes, would you be open to sharing which disability/disabilities you identify with? i. Would you consider any of the disabilities you have disclosed an invisible disability (i.e. that which is not readily identifiable without a disclosure occuring)? DISABILITY DISCLOSURE OF MSSD 124 Should you have any questions or concerns please do not hesitate to contact me at smhearn@usc.edu. Sincerely, Stacey M. Hearn Doctoral Candidate DISABILITY DISCLOSURE OF MSSD 125 Appendix C Information Sheet for Non-Medical Research STUDY TITLE: Disability Disclosure: The Lived Experiences of Medical School Students with Disabilities PRINCIPAL INVESTIGATOR: Stacey M. Hearn FACULTY ADVISOR: Dr. Paula M. Carbone You are invited to participate in a research study conducted by Stacey M. Hearn, M.Ed., M.S. under the supervision of Dr. Paula M. Carbone, from the Rosser School of Education at the University of Southern California (USC). The results will contribute to the completion of Stacey M. Hearn’s doctoral dissertation. You were selected as a potential participant in this study because you are a current student with an invisible disability in an allopathic medical school in the United States who has elected to not disclose your disability status. Your participation is voluntary and you may ask questions about anything that may be unclear at any point during the study. PURPOSE OF THE STUDY The purpose of this study is to examine the willingness of allopathic medical school students with invisible disabilities to disclose disability status. Specifically, the purpose is to explore the impact of your perceptions of the medical school environment and the behaviors of those in the environment on your willingness to disclose disability status. Your participation in this study will aid in understanding what, if any, environmental and behavioral barriers exist within medical schools that impact the willingness of medical school students to disclose disability status. Please note that sensitive questions may be asked during interviews regarding disability status, disability, and impacts of disability status. PARTICIPANT INVOLVEMENT You are encouraged to read the information provided below and ask questions about anything you do not understand before deciding whether or not to participate. Please take as much time as you need to read the consent form. You may also wish to discuss your potential participation with family, friends, or colleagues. Scheduling and completion of interviews will constitute consent to participate in this research project. The brief recruitment survey will be broadly distributed to seek participants who meet selection criteria. The survey will be administered electronically via Qualtrics ® and consist of mostly closed ended questions and two open ended questions. If you decide to take part in this survey, you will be asked to click on the survey link provided via an email or social media posting. Clicking on the provided link will direct you to Qualtrics ® and the survey will take approximately three minutes to complete. The survey will remain open until a sample size of 12 to 15 participants are secured. DISABILITY DISCLOSURE OF MSSD 126 Participants from the recruitment survey who meet selection criteria will be invited to participate in a one-on-one private virtual Zoom ® interview utilizing both audio and video connections. Zoom ® interviews will be recorded with participant consent. Participants can decline to be recorded and will be able to continue in the study, however, the researcher will ask that field notes taken during the interview be checked for accuracy. The interviews are estimated to take approximately one hour to one and a half hours. Interviews will not exceed one and a half hours. PAYMENT/COMPENSATION FOR PARTICIPATION Compensation is not available in this study. You will not be compensated for your participation. CONFIDENTIALITY The Institutional Review Board (IRB) at USC reviews and monitors research studies to protect the welfare of research participants and ensure ethical practices are undertaken in the development and implementation of studies involving human participants. As such, the IRB and members of the research team will have access to the data collected/observed. Research results that are published and/or discussed at conferences will not contain identifiable information. The brief recruitment survey created and distributed through Qualtrics ® is anonymous unless you consent to provide your name and email address as consent to further participation in the study. All Qualtrics ® settings have been arranged to aid in your anonymity and as such the researcher will not have access to identifiable information unless you the participant provide it in the optional survey question. Interviews will be conducted in a one-on-one setting using the Zoom ® platform using a personalized link and individualized password to prevent uninvited guests from entering the private electronic room. Participants will be asked to provide consent to the recording of the interview. Recordings of interviews are saved into the Cloud and password protected. Recordings will be provided to a third party, Rev.com, for transcription. Rev.com, a transcription service with strict customer confidentiality policies requires all of their professionals to sign an NDA and confidentiality agreements. Furthermore, Rev.com ® uses a secure platform and encrypts all data that is transmitted as well as data stored on protected AWS servers using TLS 1.2 encryption. Finally, I will request that Rev.com delete all files shared once transcription is completed and returned to the researcher. Identities of participants will be kept confidential as the researcher will provide a pseudonym in interview transcripts after member checking has occurred. Zoom ® recordings, interview transcriptions, field notes, and any other identifying information will be stored in a password protected file on an external hard drive using Microsoft’s BitLocker ® and stored in a lockbox in a home office where only the researcher will have access. INVESTIGATOR CONTACT INFORMATION If you have any questions regarding this study, please contact Stacey M. Hearn at (213) 821- 4857 or smhearn@usc.edu. IRB CONTACT INFORMATION DISABILITY DISCLOSURE OF MSSD 127 If you have any questions or concerns regarding your rights as a research participant you may contact the University of Southern California’s Institutional Review Board at (323) 442-0114 or email irb@usc.edu. DISABILITY DISCLOSURE OF MSSD 128 Appendix D Social Media Posting Request for Survey Participants Do you identify as a medical school student with a disability? Are you a current medical student in the United States? Are you at least 18 years of age? If you answered yes to all of these questions, you are invited to participate in a brief recruitment survey (estimated three minutes to completion) to see if you meet additional eligibility requirements for a qualitative study using one-on-one interviews conducted by a doctoral candidate at the University of Southern California’s Rossier School of Education. Participation is voluntary. To participate in the recruitment survey please follow the anonymous Qualtrics ® link below: Recruitment Survey: Disclosure Decisions of Medical School Students with Disabilities Should you have questions feel free to contact the researcher at smhearn@usc.edu. Potential images from Shutterstock.com to be purchased for Facebook Social Media Posts: DISABILITY DISCLOSURE OF MSSD 129 DISABILITY DISCLOSURE OF MSSD 130 Appendix E Thank You Email: Participation Reached Subject Line: Thank you for your interest in the Medical School Student Research Body: Thank you for participating in the brief recruitment survey for my research on disclosure decisions of medical school students with invisible disabilities and offering your time and energy to take part in the interview process. At this time, I have reached the number of required participants. Should any participants elect to halt their participation, I may reach out to you to gauge your continued interest in participating. Again, thank you for your time and interest. I wish you the best in your continued educational endeavors. Best, Stacey M. Hearn Doctoral Candidate DISABILITY DISCLOSURE OF MSSD 131 Appendix F Revised Survey including demographic information Purpose: The following questions are meant to ensure participants meet required participation criteria for the qualitative study. Introduction: As a doctoral student at the University of Southern California, I am seeking current medical school students with invisible disabilities to take part in this three (3) minute survey. The purpose of this survey is to recruit eligible participants to a qualitative research study for a dissertation. Your participation is voluntary, and responses are confidential. No personally identifiable information will be associated with any summary reports. Instructions: please select the answer(s) the best describe you and your experience. Question Type Level of Measureme nt Response Options RQ Are you currently enrolled as a student in medical school? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Is your medical school in the United States of America? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Upon graduation will you be conferred a Medical Degree (MD) or a Doctor of Osteopathic Medicine Degree Criteria Nominal Medical Degree (MD) Doctor of Osteopathic Medicine Degree (DO) Other: Criteria (an answer of B or C will exclude DISABILITY DISCLOSURE OF MSSD 132 (D.O.)? particip ants from the study) Do you have a disability as defined by the Americans with Disabilities Act (ADA)? Criteria Nominal Yes No I do not know Criteria (an answer of B or C will exclude particip ants from the study) Which category/categories of disability do you identify with (select all that apply): Criteria Nominal (category) Cognitive Learning Disability (LD) Physical/Mobility Medical Blind/Low Vision (BLV) Deaf/Hard of Hearing (DHH) Psychological-Anxiety and/or Depression Psychological -Other: Other: Criteria (Some disabilit y categori es may be eliminat ed immedi ately if disabilit y is conside red visible or difficult to hide from others) Would you characterize any of your selected categories of disability as invisible (i.e. not readily identifiable to others without your disclosing your Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the DISABILITY DISCLOSURE OF MSSD 133 status)? study) Have you formally disclosed your disability status to the University’s Disability Office? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Have you formally disclosed your disability status to employees of your medical school? Criteria Nominal Yes No Criteria (an answer of B will exclude particip ants from the study) Are you willing to participate in an anonymous interview regarding your experiences as a medical school student with a disability? Criteria Nominal Yes No Maybe, I would like to communicate with the researcher first before deciding. Criteria (an answer of B will exclude particip ants from the study.) If willing to participate in a confidential interview, please provide the following information (you may provide a pseudonym if you wish for a preferred name, however, please provide a real email address or I will be unable to contact you): Open N/A Preferred Name Email address I consent to being contacted by the researcher. Please provide a Yes or No response Require d for continu ed commu nication re: particip ation in the study DISABILITY DISCLOSURE OF MSSD 134 To allow for your full participation, will you need any accommodations during the interview process? Nominal Yes No Unsure Allow for plannin g of accessib le intervie ws. What, if any, accommodations will you need to fully participate in the interview process? Open N/A Provide large text box Allows for plannin g of accessib le intervie ws. If willing to participate in an interview, what are your preferred pronouns? Criteria N/A She/Her/Hers He/Him/His They/Them/Theirs Other: (open text box) Allows for appropr iate pronou n use during intervie w process. If willing to participate in an interview, what is your age? Criteria N/A en text box Demogr aphic data If willing to participate in an interview, what ethnicity/ethnicities do you most identify? Criteria N/A en text box Demogr aphic data If willing to participate in an interview, what is your current geographic location (state/city or town - this aids with scheduling to ensure appropriate time Criteria N/A en text box Demogr aphic data & scheduli ng of intervie ws conside rations DISABILITY DISCLOSURE OF MSSD 135 zone conversations) If willing to participate in an interview, what medical school do you currently attend? Criteria N/A en text box Demogr aphic data If willing to participate in an interview, what year are you in medical school Criteria N/A M1 M2 M3 M4 Other (open text box) Demogr aphic data If willing to participate in an interview, have you started your clinical rotations/placement s? (if yes, please list which rotations/placement s completed. If other, please explain) Criteria N/A Yes (open text box) No Other (open text box) Demogr aphic data Thank you for your participation. Your responses have been recorded. Individuals who meet recruitment criteria and have provided their contact information will be contacted by the researcher via email within 48 hours. DISABILITY DISCLOSURE OF MSSD 136 Appendix G Email Request for Distribution of Recruitment Email and Survey to Medical School Personnel Subject: Seeking Distribution of Recruitment Survey for Doctoral Candidate's Research Study Dear <insert name>, I am a current doctoral candidate at the University of Southern California's Rossier School of Education in the Organizational Change and Leadership program studying the disability disclosure decisions of medical school students in allopathic medical schools. I am seeking your assistance with providing the attached email and Qualtrics ® brief recruitment survey link to your medical school student body in an effort to recruit medical school students with invisible disabilities who have elected to not disclose their disability status. Participation in this Institutional Review Board approved qualitative study is voluntary. The brief recruitment survey is anonymous unless participants opt into the qualitative study and provide their consent to be contacted by the researcher. All interviews stemming from the recruitment survey will remain confidential. Should you have questions or concerns you may contact me at 213-821-4857 or smhearn@usc.edu. Thank you in advance for your willingness to forward the attached email and Qualtrics ® recruitment survey link. Sincerely, Stacey M. Hearn Doctoral Candidate DISABILITY DISCLOSURE OF MSSD 137 Appendix H Recruitment Email for Medical School Student Body Subject Line: Participants Needed for Research on Disability Disclosure Decisions Body: Hello future medical doctors! I am a doctoral candidate, at the University of Southern California in the Rossier School of Education’s Organizational, Change and Leadership program. I am conducting a qualitative study on the disclosure decisions of current medical school students with invisible disabilities where the goal of the study is to better understand the environmental and behavioral barriers along with independent factors that influence disclosure decisions. Participation in this Institutional Review Board approved study is voluntary and confidential. To see if you qualify to participate, please complete this brief (3-minute) recruitment survey. The brief recruitment survey is anonymous unless participants opt into the qualitative study and provide their consent to be contacted by the researcher. All interviews stemming from the recruitment survey will remain confidential. No personally identifiable information will be associated with your responses in the recruitment survey nor the write up of data received during the interview process. Should you have questions or concerns you may contact me at 561-558-5843 or smhearn@usc.edu. Thank you in advance for your willingness to forward the attached email and Qualtrics ® recruitment survey link. Sincerely, Stacey M. Hearn Doctoral Candidate DISABILITY DISCLOSURE OF MSSD 138 Appendix I Interview Protocol Research Questions: ● RQ1: What, if any, systemic barriers (i.e., technical standards, undifferentiated programs, processes/procedures, etc.) exist that impact the willingness of students with disabilities in allopathic medical schools to disclose disability status? ● RQ2: What internal factors, if any, (i.e. stigma, negative attitudes, culture, climate etc.) impact the willingness of allopathic medical school students with disabilities to disclose disability status? Respondent Type: Allopathic medical school students; invisible disabilities; U.S. medical schools; have not disclosed disability status. Introduction to Interview: Thank you for taking the time to interview with me today. Your participation in this interview will help to inform my dissertation study that focuses on disability disclosure decisions of students in medical degree granting medical schools in the States. Prior to starting, I would like to take a moment to review the informed consent together and address any questions or concerns you may have. [Use share screen and pull up Information Sheet for Non-Medical Research document to remind them of what was previously sent via email. Highlight each section of the document with particular focus on informed consent. Allow time for any questions or concerns of participant and request verbal acknowledgment of understanding of the document in its entirety.] If it is okay with you, I would like to record our conversation today for the purpose of ensuring I accurately represent your statements and thoughts in my study. Recording our conversation will allow me to focus on you as I will not need to write extensive notes during our talk. Recordings will be transcribed using a confidential 3rd party called Rev.com. This company is known for completing work for individuals with disabilities and their employees must sign Non-disclosure and confidentiality agreements; additionally, they will destroy all recordings once transcribed and provided to me. No copies of transcriptions will exist beyond those I keep and in a password protected file. With that, do I have your permission to record this interview (Provide time for questions and response). - If no: If you would prefer I am happy to take notes while we speak. Any notes I take, I may share with you if needed to ensure I am accurately capturing your responses and sentiments. Would you be willing to review my notes after our conversation if needed? (Provide time for response.) Great, I will reach out to you via email if additional clarification is needed. - If yes: Great, thank you. Do you have any questions for me before we begin? (Provide time for questions.) Let’s begin [hit record and allow a moment for the participant to accept that we are being recorded]. DISABILITY DISCLOSURE OF MSSD 139 Interview Questions RQ Addressed Key Concept(s) Addressed Q-Type (Patton) As we begin, I am curious how you might describe yourself as a person and as a student? Probe: disability impact this description? OR considering disability status, would you add anything else to how you describe yourself? N/A Background - establishes rapport and addresses individual as a person beyond disability. Opinion/value What drew you to study medicine? Probe: Disability related? N/A Background - establishes rapport and considers internal factors, desires, & potentially experiences Opener to more sensitive questions. Experience/Behavior & Opinion/Value How did you select <insert medical school name>? Probe: What was it about <school name> that made you want to attend? Probe: Particular individuals you met? Probe: Website or other materials provided/available? Probe: Prior knowledge of school? From whom? RQ1 External→thoughts on potential barriers or overall accessibility knowledge of factual information about medical school. Knowledge & Opinion Can you tell me a little about the overall requirements of the medical school? Probe: Tech Standards & essential requirements? How did you become aware of them? RQ1 Barriers Knowledge What kind of challenges, if any, have you experienced in medical school so far? Probe: Academic/classroom vs. Clinical? Probe: What are your RQ1/RQ2 Barriers Experience/Behaviors & Sensory Probe: Feeling & Opinion/Values DISABILITY DISCLOSURE OF MSSD 140 thoughts about the challenges you describe (parrot some of those the subject provides)? What, if any, information was shared by your medical school about accommodations or services available for individuals with disabilities? Probe: How did you learn about available resources? RQ1 Factual information about available resources & transparency of university regarding disability related requests/needs. Knowledge Now that you are a <year in med school>, how would you describe your experience so far? Probe: Has disability status impacted your experiences in any way? Probe: Do you think your disability status has an impact on your ability to meet standards, eligibilities, essential requirements as they are currently written? RQ2 Thoughts on experience in medical school Experience/Behavior Transition: We have talked a little bit about your overall experiences in medical school so far. I would like to transition and talk a little about your decision to not disclose disability status. Have you disclosed disability status to anyone at the university? If yes, to whom? Probe: students/peers, faculty, staff, other? RQ2 Perceptions of Culture/Climate Experience/Behavior What prompted the disclosure to <fill in the blank based on what they answer in prior question>? If no, skip to next question. RQ2 Experience, Behavior, Potentially knowledge. What influenced your decision to not disclose disability status? Probe: Tell me more about <x>. Probe: Have you ever RQ1 & RQ2 Lived experiences and if a need for disability related accommodations/services existed. Probes: explore barriers, Feeling & Sensory DISABILITY DISCLOSURE OF MSSD 141 disclosed disability status throughout your education? How is med school the same or different? Probe: Informal accommodations or services in place? Prove: Strategies developed to help compensate for disability related symptoms? Probe: Anything in the “clinicalized” culture that impacted decision? supports, & individual factors that may contribute to decisions to disclose/not disclose. What, if anything, might change your decision to disclose disability status in the future? RQ1/RQ2 Environment, Climate, & Culture Process/Procedures Access Experience & Behavior Transition: I would like to understand more about the overall environment at your medical school including your experiences with the medical school faculty and staff as well as interactions with your peers. In what settings do you typically interact with faculty? Probe: clinical, classroom, other? RQ1 Expectations, views of disability and competency Experience How would you describe the interactions you have with your faculty? Probe: Are the interactions typically supportive? Not supportive? How so? To what do you attribute the differences? Probe: What is your perception of the interactions you have with faculty? Do these interactions impact what you share? Probe: tell me more…or can you clarify… Probe: language use? Probe: informal or RQ2 Barriers Attitude/Stigma Perceptions Experience/Behavior Probes: Feeling & Sensory DISABILITY DISCLOSURE OF MSSD 142 unintentional disclosures? How would you describe the interactions you have with the staff at your university? Probe: Are the interactions typically supportive? Not supportive? How so? To what do you attribute the differences? Probe: What is your perception of the interactions you have with staff members? Do these interactions impact what you share? Probe: tell me more…or can you clarify… Probe: language use? Probe: informal or unintentional disclosures? RQ2 Barriers Attitude/Stigma Perceptions Experience/Behavior Probes: Feeling & Sensory How would you describe the interactions you have with your peers/fellow students? Probe: Are the interactions typically supportive? Not supportive? How so? To what do you attribute the differences? Probe: What is your perception of the interactions you have with your peers? Do these interactions impact what you share? Probe: tell me more…or can you clarify… Probe: language use? Probe: informal or unintentional disclosures? RQ2 Barriers Attitude/Stigma Perceptions Experience/Behavior Probes: Feeling & Sensory Has your decision to disclose (or not) been impacted by the behaviors, actions, or statements of others? RQ2 Barriers Attitude/Stigma Perceptions impacting behaviors Experience/Behavior Transition: So it seems your interactions with faculty, staff, and peers has been <fill in the blank based on what they share>, is that an accurate statement? DISABILITY DISCLOSURE OF MSSD 143 Given your interactions, how would you describe the overall climate of your medical school program? For the purpose of this question I define climate as the shared perceptions of the faculty, staff, and students within the medical school. Probes: stressors, views of disability? RQ1 & RQ2 Socialization, stressors, expectations, views of disability Experiences/Behaviors & Opinion & Feeling How would you explain the overall culture of medical school? For the purpose of this question culture will be defined as how people feel about the organization and the beliefs, values, and assumptions that set the standards for behavior. RQ1/RQ2 Environment, Climate, & Culture Process/Procedures Access Opinion & Sensory What is your perception of how disability is viewed by your faculty, staff, peers? Probe: How did you come to this conclusion? Probe: What makes you feel this way? RQ2 Environment, climate, & culture Opinion Probe: Experiences/Behavior & Feeling & Sensory If you could recreate the environment however you wanted, what if anything, would you change? RQ1 Environment, Climate, & Culture Process/Procedures Access Opinion & Sensory Transition: I truly appreciate your time and how open you have been with me throughout this interview. As we wrap up…. Is there anything else you would like to share about your medical school program or what impacts your decision to disclose disability status? RQ1 & RQ2 Open question to ensure participant is able to share anything I did not touch on that may impact disclosure & experiences. Closing Question DISABILITY DISCLOSURE OF MSSD 144 Conclusion to interview: Again, I really want to thank you for your time and overall willingness to participate in my research study. If you have any questions at all or would like to follow up with me, please feel free to reach out to me via email, if desired we can set up a time to talk via Zoom ®. Once I have the interview transcription, I will email you a copy and request you to review it for accuracy which will allow you another opportunity to clarify anything that you believe did not come across clearly or may have been misrepresented or misunderstood by me. Before we end, do you have any final questions for me? Thank you again for your time and have a great day.

Abstract (if available)

Abstract The purpose of this qualitative study was to examine the willingness of allopathic medical school students with disabilities to disclose disability status based on their perceptions of the medical school environment and the behaviors of those within the environment. The conceptual framework of social cognitive theory allowed exploration of the reciprocal interaction of environmental barriers and the behavioral barriers and factors that influence disability disclosure decisions of medical school students with disabilities. A qualitative study was constructed utilizing semi-structured one-on-one interviews following the completion of a recruitment survey. The target population of current allopathic medical school students with invisible disabilities who had not disclosed was later opened to current allopathic medical school students with invisible disabilities regardless of disclosure status. A total of 56 recruitment surveys were completed culminating in nine interviews. The findings revealed three themes between the two research questions: 1) psychological safety with sub themes of expectations, contemplated congruence with authority, systemic messaging and power dynamics, 2) perceptions of available support with sub themes of notifications and policy, process, and procedures, and 3) ontology of social reality with sub themes of trust, help-seeking behaviors, stigma, and discrimination. Three evidence-based recommendations to address the findings included: 1) reducing disability bias through disability diversity training and education of university personnel, 2) establish a comprehensive DEI program that includes disability, and 3) reduce student’s negative perceptions related to requirements of disability disclosure and accommodation processes through transparent information sharing.

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University of Southern California Dissertations and Theses

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Asset Metadata

Creator Hearn, Stacey M. (author)

Core Title Disability disclosure: the lived experiences of medical school students with disabilities

School Rossier School of Education

Degree Doctor of Education

Degree Program Organizational Change and Leadership (On Line)

Degree Conferral Date 2024-12

Publication Date 11/15/2024

Defense Date 10/31/2024

Publisher Los Angeles, California (original), University of Southern California (original), University of Southern California. Libraries (digital)

Tag allopathic medical schools,disability,invisible disabilities,medical schools,medical students

Format theses (aat)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Carbone, Paula M. (committee chair), Jih, Debbie (committee member), Krop, Cathy (committee member)

Creator Email smhearn@usc.edu,staceymhearn@gmail.com

Unique identifier UC11399DNDT

Identifier etd-HearnStace-13634.pdf (filename)

Legacy Identifier etd-HearnStace-13634

Document Type Dissertation

Format theses (aat)

Rights Hearn, Stacey M.

Internet Media Type application/pdf

Type texts

Source 20241118-usctheses-batch-1223 (batch), University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright.

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA

Repository Email cisadmin@lib.usc.edu