Transgender Experiences in Healthcare

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TRANSGENDER EXPERIENCES IN HEALTHCARE

A thesis submitted to the Kent State University Honors College in partial fulfillment of the requirements for University Honors

Aaron Kessler

May, 2020

Thesis written by

Aaron Kessler

Approved by

______, Advisor

______, Director, Center for the Study of Gender and Sexuality

Accepted by

______, Dean, Honors College

TABLE OF CONTENTS

LIST OF FIGURES…..…………………………………………………………………..vi

ACKNOWLEDGMENT………………………………………………………………...vii

CHAPTER

I. INTRODUCTION………………………………………..…………….……………………………………...1

II. BACKGROUND RESEARCH…..…………………………………………………………………..……...3

Oral Histories in Medicine………………………………………………………………………………3

Transgender People in the United States………...... 7

Representing Transgender Voices in Healthcare Research……………………………….9

Economic Barriers to Receiving Healthcare……...... 11

Social Barriers to Receiving Healthcare…………………………………………………………14

Transgender Healthcare Intervention Recommendations………………………………19

III. METHODOLOGY……………………………………………………………………………………...……22

IRB Exemption………………...... 22

Case Study……………………………………………………………………………………………………22

Participant Recruitment……………...... 23

Analysis Methodology……………………………………………………………………………..……24

Sample…………………………………………………………………………………………………………27

Limitations………………...... 29

IV. ANALYSIS…………………………………………………………………………………………………….32

Lack of Accessibility for Transgender People in Healthcare………………..33

iii

Gatekeeping………………………………………………………………….40

Privilege……………………………………………………………………...42

Systemic Exclusion of Transgender People in Healthcare…………………..44

Variation in Heal Needs……………………………………………………...45

Interactions with “LGBTQ Friendly” Healthcare Institutions……………….46

Challenges Interacting with Insurance……………………………………….50

Lack of Provider Knowledge………………………………………………...54

Reluctant Treatment of Transgender People…………………………………57

Importance of Provider-Patient Relationship………………………………...59

Gendering…………………...... 61

Fear of Discrimination………………………………………………………………………………….62

Transgender Community Support…………………………………………………………………64

V. DISCUSSION………………………………………………………………………………………………....66

VI. CONCLUSION……………………………………………………………………………………………….70

Recommendations…………………..…………………………………………………………………...71

Moving Forward…………………………………………………………………………………………..72

REFERENCES…………………………………………………………………….….....74

FOOTNOTES……………………………………………………………………………83

APPENDIX

A. SHARED LANGUAGE…..……………………………………………..84

B. INTERVIEW GUIDE……………………………………………………85

C. INFORMED CONSENT…………...... 87

v LIST OF FIGURES

Figure 1. Participant Demographics..………………..…………………………………….29

Figure 2. Code Frequency by Participant………………………………………………….33

ACKNOWLEDGMENTS

This thesis would not exist without the guidance and direction of my advisor, Dr.

Molly Merryman. I cannot personally thank Dr. Merryman enough for all the help she has provided to me both professionally and personally. I would like to extend and additional thanks to Lauren Vachon, Dr. Tina Bhargava, and Dr. Suzy D’Enbeau for their instruction and contribution in this process.

Many thanks to the participants who shared their stories in order to create this thesis. This research would mean nothing without their vulnerability and generosity.

I would also like to thank my friends and family for their support throughout this process; I would not have made it to the end without the supportive people around me.

Introduction

Transgender people have a historically difficult time interacting with healthcare systems. The ability to navigate and use healthcare systems effectively is not only a good skill to have, but a necessary skill in order to maintain health. In many cases having this skill is the factor between life and death. Even more so for transgender people, being able to navigate healthcare systems, as well as health insurance systems is important because of the medical interventions associated with the identity. While not all trans people choose medical interventions, many transgender people pursue medical intervention specifically related to this identity. This makes transgender people especially vulnerable within healthcare systems because often the reason cited for a transgender person to seek medical advice and care at all is the fact of their marginalization. These vulnerabilities lead to discrimination and abuses within the healthcare system regarding gender affirming healthcare but also bleed over into normal health maintenance care often preventing transgender people from being able to receive quality healthcare at all.

This paper will begin with background research regarding the use of oral history in medical research, barriers to receiving healthcare for transgender people, the importance of transgender voices in online communities, and transgender health interventions working to make the healthcare system easier to navigate for transgender people. The methodology of the oral history collection and analysis will then be discussed, elaborating on the participants and case study used in this project. The data analysis will focus on the experiences of transgender people interacting with healthcare

systems compared to prior literature discussed. The analysis will focus particularly on barriers experienced in accessing healthcare and health insurance for transgender people as well as what interventions are wanted and needed to fix them from a transgender perspective.

This paper offers deeper insights into subjective transgender narratives and perspectives. The oral history format is used to represent transgender voices and perspectives while complementing already existing quantitative research. Examining the raw data through grounded theory and linking it to existing research, the interviews are able to illustrate how transgender people perceive barriers in healthcare and ideal ways to overcome them both as an individual and by changing the structure of the system. This research provides a holistic view of how experiences in healthcare influence a transgender person’s ability to keep themselves healthy as well as live authentically.

Looking at how healthcare impacts this group allows for a better way of understanding how to navigate healthcare as a transgender person as well as make improvements to the

US healthcare and health insurance structure.

Background Research

Oral Histories in Medicine

The practice of recording oral history is a long-established method of historical research. It is useful in collecting memories, observations, experiences, and perspectives from a certain group of people with a common background, experience, or knowledge base. While oral histories can be overlooked as a form of academic research, the knowledge and understandings gained from people telling their stories adds valuable context to quantitative research that dominates many academic fields. Oral histories offer an opportunity to let researched groups speak as themselves; they are able to narrate their own experiences rather than speaking through researchers. This method takes primary sources literally as it records the voices of those who have experienced history, resulting in a vivid account. Oral histories are particularly valuable for highlighting marginalized voices that are often misinterpreted or spoken over. As part of a marginalized group, to be able to have a story and experience from the marginalized perspective is valuable in a different way; more than just to capture events in history, it creates space in history for voices that less often get a chance to write it. Recording oral histories from transgender people about their experiences in healthcare creates space for this group to have a place in research and advocate for better systems as they see fit, rather than being subjected to what healthcare professional would think is best. In this thesis, oral histories serve as the vehicle for transgender people to share their experiences in healthcare in their own voice.

Oral histories are a form of research that prioritize documenting history through the recorded memories of narrators that give testimony. Oral history refers to a method of research or historical record keeping that involves recording and preserving oral testimony as well as the product it produces (OHA, 2009). It primarily consists of audio or video recordings of first-person accounts regarding a specific topic. In the case of my research, all the narrators are transgender people discussing their experiences in the US healthcare system on video being interviewed. Visual oral histories add an extra element for the narrator to actually be seen as they tell their story. All participants should have the intention of creating a permanent record of insights into a certain area that would benefit from personal context. Donald Ritchie in his book, Doing Oral History, explains “Oral

History collects memories and personal commentaries of historical significance through recorded interviews. An oral history interview generally consists of a well-prepared interviewer questioning an interviewee and recording their exchange in audio or video format” (2015). In order to be held to the standard of oral history it must abide by the

Oral History Association’s guidelines, including but not limited to: narrators should be seen as part of a community, be guided with open ended questions, as well as interviewers should acquire informed consent before the interview, communicate benefits and risks, conduct preliminary research about the topic, and, lastly, a “critical approach to the oral testimony and interpretations are necessary” (OHA, 2009). Within oral histories, a lived experience is able to become the data itself.

Oral history is a distinct method of interviewing through the open narration around an event or topic and the extent to which that content is able to be discussed by a

narrator. Oral history interviews are designed to create an “in-depth account of personal experience and reflections, with sufficient time allowed for the narrators to give their story the fullness they desire” (OHA, 2020). The content is focused on past events rather than just contemporary events, that can contribute to a body of knowledge. The personal reflections help add detail to purely factual or quantitative accounts. “Oral history interviews are unique in that the interaction of researcher and subject creates the possibility of going beyond the conventional stories… to reveal experience in less culturally edited form” (Perks & Thomson, 2016). In the case of transgender experiences in healthcare, while most events have happened recently, they add to the understanding of a long history of abuse and manipulation of transgender and gender diverse people within healthcare that are well documented. Going back to the 1950’s there is much information about transsexuals, transgender, or gender diverse people in healthcare, but from a different perspective (Chu & Drager, 2019).They are being documented upon as abnormal rather than asked what is needed out of the healthcare system to treat them as human. This thesis aims to use oral history to understand a transgender perspective in a modern healthcare system as well as go beyond the conventional record of abuse and incompetency common in health practices.

Beyond taking account of transgender and gender diverse medical interventions in the 1950’s and 1960’s, oral histories have been used in medicine to supplement research and provide data on developments in the field as well as patient accounts. As Olch explains of medical librarians using the technique, oral histories are useful “attempts to capture the recollections and interpretations of those participants in the development of

contemporary medicine who are judged to be knowledgeable about the subject under study, whether it be an individual or a subject area” (1969). This refers to the healthcare practitioners as well as the patients who have experienced something significant within the field. Transgender people navigating a system that is not built for them results in them becoming particularly knowledgeable in the field of transgender health, even more so than providers. With rapidly changing healthcare systems, it is important to understand the impact it has on the people, and whether the advances are actually helping anybody

(Tomes, 1991). Conversations with Medical Informatics Pioneers: An Oral History

Project is an example of consulting traditional experts in the development of a field

(2006), similar to the oral history interviews done with major contributors to the development of evidence-based medicine (Smith & Drummond, 2014). The Washington

University School of Medicine Oral History Project was designed to “capture and preserve first person accounts and reflections on the history of the medical school, medical practice in St. Louis, and developments in the field of medicine” (2009). Many popular projects focus on healthcare professionals as the narrators of oral histories.

Patient perspectives are underrepresented in history. The patient perspective and the marginalized identity of transgender people make these oral history recordings a valuable contribution to both medical research and oral histories.

While there is prior research on the experiences of transgender people interacting with healthcare systems, an oral history format is able to capture the experience in a different way. Rather than taking stock of a certain number of common experiences, the visual oral history was able to value each interview participant as an entire human being

in community. They were able to go in depth and focus on the issues that had most affected them, even if they seemed less significant on paper. These oral histories add the context needed from transgender voices in medical research to actually improve healthcare quality standards in the United States. “The unique aspects of this technique include the ability to supplement the written record with candid commentary, to create a record or collection of information about an individual or a specific subject area in those instances where a prior record does not exist, and to capture a sample of the personality of the person being interviewed by preservation of the tape recording” (Olch,

1969).When providers are able to hear not only the experiences of transgender people, but also the impact those experiences have had on them from interacting with healthcare systems, they will be better able to modify their practices to provide holistic care and value transgender patients as the people they are, rather than for their marginalized identity. The oral history format is able to transcend traditional quantitative methods and add context to not only the existing data but the lives of transgender people.

Transgender People in the United States

A transgender person is a person who does not identify as their sex assigned at birth. Sex assigned at birth is a label received at birth based on the appearance of genitals.

Babies with a penis are assigned male and babies with a vagina are assigned female. Sex assigned at birth is used to describe biological characteristics of a person but is not fully comprehensive as it is based on appearance of genitalia at birth. It cannot fully describe the presence of hormones, sex chromosomes, and secondary sex characteristics that a

person has because those are often not investigated at time of birth and vary throughout biological development, and, because it is a crude visual assessment, it overlooks intersex characteristics. It is often used in medical settings to describe the aforementioned traits but is an imperfect term due to the variability of those within cisgender populations and the inability to reconcile the incongruencies associated with a certain label in a medically transitioning transgender person. If a transgender person chooses to medically transition, the presence of hormones, secondary sex characteristics, and appearance can all be changed. Medical transition is a type of medical intervention that changes a person’s appearance or physical characteristics to be more aligned with their internal view of themselves and can involve taking hormones as well as various types of surgery. The goal of medical transition is to help transgender people feel more comfortable in their bodies. A transgender person may or may not choose to transition. The choice to transition does not negate their gender or their identity as a transgender person.

Sex assigned at birth does not describe gender, which is a social construction based on different characteristics of men and women such as cultural norms, roles, and relationships (WHO, 2020). Transgender people are not limited to a traditional binary system of gender; nonbinary transgender people are those who identify outside of binary genders. Nonbinary transgender identities can include agender, or without gender, genderqueer, genderfluid, simply nonbinary, and more. Nonbinary transgender people may or may not choose to transition as with binary transgender people. Those who identify with their sex assigned at birth are cisgender.

In the early 2000s, the prevalence of transgender adults in the United States was estimated at about 700,000, or 0.3% of the population (Gates, 2011). Within the following years, that number nearly doubled. In 2016, in the U.S. there were roughly 1.4 million adults who identified as transgender (Flores et al., 2016). This drastic difference shows the difficulty in estimating the size of the transgender population as well as the potential of this population to be much larger than those estimates. The amount of transgender people in the United States is difficult to accurately estimate because transgender people are a hidden population; they must self-identify as transgender in order to be counted and identifying as transgender can have possible negative repercussions associated with it. This makes an accurate estimate even harder to determine. The number of transgender adults medically transitioning is even harder to determine because it requires both self-identification and access to medical care related to transition. Despite these difficulties, the adult transgender population in the United States is large. Upwards of 1.4 million people are potentially seeking medical care related to transition and gender affirmation. It is important to have a full picture of the healthcare needs and experiences of this population in order to provide safe and accessible care.

Representing Transgender Voices in Healthcare Research

For transgender people, having a voice in the research about their lives is essential to developing accurate and helpful healthcare systems. Academic and medical research are critical spaces where transgender voices are underrepresented and undervalued. As

Safer et al. described, the priorities for barriers to care among transgender people must

include “potential interventions for [knowledge] gaps, determination of indirect barriers like environment and stigma, and potential solutions to overcome those barriers” (2016), and to collect this research is from transgender people themselves sharing their experiences in healthcare. Having a voice and a space has necessitated a shift in the transgender community from transgender people being “a pathologized transsexual population that existed around support and informational groups to a politicized transgender community that challenges society’s gender paradigms” (Shapiro, 2004) which has allowed them to make change and advocate for themselves in different realms.

Particularly in the realm of healthcare, transgender people often do not have a voice in the research trying to understand their experiences and needs. Platforms where they are able to share their voices, such as social media, necessitate the ability to be heard about poor experiences in healthcare, whereas healthcare systems are often unable to make space for the stories of transgender people, especially in addition to the quantitative data already rarely considered. While traditional surveys about quality of hospital care are used to understand patient needs, they can be limited by low response rate (Hswen et al., 2018), and are filtered by the oppressive system itself. There are limited measures monitoring equality of care for LGBTQ patients (Hswen et al., 2018), which makes it harder to actually improve a system that is obviously not meeting their needs. With qualitative research focusing on the transgender community, the important issues that are a discussion among transgender communities can be brought to light. “Transgender healthcare providers can engage with transgender communities using social media

platforms to educate themselves, inform research and medical practice, and improve healthcare quality” (Haimson, 2019).

To harness the value in shared stories it is recommended that transgender stories drive professional exposure to the understanding of their lives. “Using these transparent data to inform practice and research questions holds institutions and researchers accountable to a public, community audience” (Blotner & Rajunov, 2018). Providers guessing what transgender patients need and want is not only irresponsible, but dangerous. Transgender patients need to feel safe in order to be able to share with their providers what is needed, which good qualitative research can provide so that healthcare professionals are informed by relevant evidence-based research and affirming practices

(Blotner & Rajunov, 2018) without having to put a burden on individual transgender people on a daily basis.

Economic Barriers to Receiving Healthcare

Transgender people face disproportionate rates of poverty in the United States

(CAP & MAP, 2015). Employment discrimination, hostile education environments, difficulty accessing financial aid, housing discrimination, barriers to healthcare, credit discrimination, and refusal to issue appropriate identity documents all raise the costs of living and lower the income of transgender people in the United States (CAP & MAP,

2015). All economic factors influence each other, and when one major contributor changes, it is likely to affect the others. Transgender people with average income are economically penalized for their transgender identity, while those with lower than

average income are more likely to become impoverished or even destitute. With healthcare being one of the major contributors to poverty for transgender people, it is important to investigate further.

Transgender people in the United States experience homelessness and unemployment at disproportionate rates (James et al., 2016, CAP & MAP, 2015), due to a lack of workplace and housing rights and protections. When transgender people are homeless, they experience further barriers to healthcare (Spicer, 2010), particularly economically related to affording care and consistently engaging in care. As a result, homeless transgender people have additional healthcare risks and barriers to treatment

(Spicer, 2010), compared to their non-homeless transgender counterparts. High rates of unemployment are also a major barrier to maintaining health and appropriate health care

(Reicherzer, 2008). One source of difficulty as an unemployed person is the lack of accessibility to health insurance without an employer providing it. When a transgender person is unemployed, they experience more barriers to accessing healthcare and maintaining health (Reicherzer, 2008). When transgender people experience workplace and employment discrimination it results in lack of insurance coverage which restricts access to care (Hughto et al., 2015). There is a higher prevalence of unemployment among transgender people relative; a likely product of employment discrimination which results in lack of insurance and more difficulty accessing care (Conron et al.,

2015).Transgender individuals with low-income were more likely to experience refusal of care (Tillery, 2014). In one study, low-income transgender respondents reported a rate of almost 33% refusal of care (Tillery, 2014). In another study, 41% of transgender

participants reported experiences of transgender-related discrimination. Factors associated with this include low socioeconomic status and needing healthcare that was unable to be obtained (Bradford et al., 2013). Lower socioeconomic status is associated with transgender individuals not being able to obtain needed healthcare (Bradford et al.,

2013).

Transgender individuals have increased difficulty getting healthcare coverage

(James et al., 2016). Among the respondents of the 2016 National Transgender

Discrimination Survey, 19% lacked any health insurance compared to 17% of the general population, and 51% had employer-based coverage compared to 58% of the general population. These disparities are even worse among racial and ethnic minority trans people (James et al., 2016). Lack of insurance can also be a factor in increasing likelihood of discrimination and social barriers like disrespect from providers, delayed or refused care, avoidance of healthcare, and inability to engage in preventative care. It is harder to get insurance because of affordability and more often denied coverage, whether that be as a whole or for specific interventions. When transgender people were denied healthcare coverage, they had a harder time accessing transition related care; 25% of respondents experienced a problem in the past year with their insurance related to being transgender (James et al., 2016).

Applying for public health insurance programs, like Medicare and Medicaid, is also an issue for transgender Americans. This difficulty can be related to access to obtaining legal documents with their current name and gender as opposed to their name and gender assigned at birth (Gonzales & Henning-Smith, 2017). Even if transgender

people do have health insurance, they still have difficulty getting transition related care covered (James et al., 2016, Gonzales & Henning-Smith, 2017). This pushes many transgender people to pay for transition related healthcare out of pocket (James et al.,

2016, Gonzales & Henning-Smith, 2017), which can cost over $100 per month for hormone therapy and over $100,000 for some gender affirming surgeries (Gonzales &

Henning-Smith, 2017). Almost all transition related healthcare is paid for out of pocket without subsequent reimbursement from insurance (James et al., 2016), and accessibility relies on an individual’s ability to pay for it. The desire to transition is often prevented by the ability to do so.

Policy changes have the potential to help transgender Americans more easily access insurance and healthcare. The Affordable Care Act banned discrimination on the basis of gender from healthcare providers. In 2014, the Affordable Care Act prohibited insurers from denying coverage on the basis of gender identity (Gonzales & Henning-

Smith, 2017). The United States Department of Health and Human Services lifted the ban on Medicare coverage of gender affirming surgeries. However, access to coverage is still largely left to provers’ policies and whether they decide that medical intervention is medically necessary (Gonzales & Henning-Smith, 2017).

Social Barriers to Receiving Healthcare

Because transgender identity is also associated with medical intervention, transgender people experience higher vulnerability when interacting with healthcare systems and are reluctant to come out to doctors. This coupled with a knowledge gap

among medical providers (Krisberg, 2018) results in heightened barriers in seeking healthcare.

Stigma surrounding transgender people and their medical choices are very present in the United States currently. When transgender individuals experience stigma, it fosters distrust and discourages them from seeking care. In one study, one in five problematic interactions reported by participants involved health professionals refusing to care for transgender patients (Kosenko et al., 2013). Younger transgender individuals experience more difficulty accessing transition related care in institutional settings, and often transgender youth are denied the ability to change their gender in any way within institutional settings (Lombardi, 2001). Depending on the gender the are perceived as, transgender people also experience prejudice. FTM transgender individuals experience more difficulty obtaining healthcare than MTF transgender individuals; in one study,

39% of female-to-male participants reported being denied health care or having difficulties obtaining health care compared to 13% of male-to-female participants

(Bradford et al., 2013).

When gender identity is regarded as solely a medical problem, those who do not strictly conform to binary roles of gender experience more barriers to transition related care (Hughto et al., 2015). The medicalization of gender nonconformity represents one form of structural stigma that both shapes and reinforces societal perceptions of transgender people as deviant and limits the ideals medical professionals they work with

(Hughto et al., 2015). The ability to pass may help transgender individuals avoid stigma and access care, but those who do not pass face increased levels of stigma in health care

systems (Hughto et al., 2015). Passing limits the extent to which stealth individuals are able to access support from the transgender community or medical and mental health interventions. This adds another layer to the ability to access care for transgender people based on how they are perceived. Additionally, concealment by those who have not transitioned can restrict access to transition-related care for those who desire it, as well as prevent those who have transitioned from receiving appropriate preventative care for anatomy they may still possess (Alegria, 2011).

When transgender people do not disclose their identity, they are more likely to receive inadequate care. When transgender people disclose their identity, they are more likely to face discriminatory practices from health insurance companies and healthcare professionals (James et al., 2016). Whether transgender people disclose their identity or not, they face discrimination and false barriers. Lack of disclosure about gender identity can lead to inadequate care, while disclosure can make LGBT people more vulnerable to discrimination and denial of care. For transgender individuals, disclosing one’s gender identity may result in discriminatory practices by insurance companies that refuse to cover necessary cross gender health care (Tillery, 2014). Internalized transphobia can diminish health related self-efficacy and prevent transgender individuals from receiving care (Hughto et al., 2015). Internalized stigma in transgender people may reduce self-care and help-seeking behaviors for mental health problems resulting in a failure to access mental health services when needed (Hendricks & Testa, 2012).

The prejudice experienced from outside society also influences the ability of transgender people to get quality healthcare and those can create artificial barriers to

accessing timely, culturally competent, medically appropriate, and respectful care

(Stroumsa, 2014). When transgender individuals experience discrimination within healthcare, they are more likely to avoid medical care. In a study, 26% of participants experienced discrimination in the health care system due to gender identity (Korpaisarn

& Safer, 2018). Transgender people of color are more likely to experience barriers to healthcare; a higher proportion of respondents who are people of color and reported experiencing discriminatory and substandard care (Tillery, 2014).

Lower levels of education have been correlated with avoiding or delaying health care among transgender people (Reisner, 2013). In one study, 25% of respondents had a lower level of educational attainment and 48.7% reported avoiding or delaying care in the past 12 months because of their transgender status or gender identity (Reisner, 2013).

Education is correlated with health literacy levels, which present another barrier for transgender people. Transgender health resources written at a high level of comprehension decrease the accessibility for transgender individual with lower levels of health literacy, and online information regarding transition related care is written at a level that is too complex for patients to understand (Cook et al., 2017).

Physical barriers also present an issue for transgender people in accessing healthcare. Many transgender people live in places removed from access to transition related care (James et al., 2016). National Transgender Discrimination Survey reported that 45% of respondents received transition related health care within 10 miles of their home, however, respondents were three times more likely to have to travel more than 50 miles for transgender-related care than for routine care (James et al., 2016).

Social support is an important factor to maintaining health and staying engaged in healthcare, and the LGBTQ community is well known for lacking familial and established support networks. Transgender individuals who lack family and community support experience more discrimination including obtaining needed healthcare. In a study, 41% of participants reported experiences of lacking community connectedness and transgender-related discrimination including needing health care unable to be obtained

(Bradford et al., 2013). When transgender individuals are alienated from their families, they have more difficulty engaging in health care (Mayer, 2008). LGBTQ individuals' family lives can affect their engagement and satisfaction with care (Mayer, 2008). Lack of social support is also related to other factors that can create barriers to accessing healthcare. Transgender individuals with substance use issues experienced more discrimination including obtaining needed healthcare. In the same study, 41% of participants reported experiences of substance use and transgender-related discrimination including not being able to obtain needed health care. (Bradford et al., 2013).

Transgender individuals with a history of violence experience more discrimination including have difficulty obtaining needed healthcare. Again, 41% of participants in the same study reported a history of violence and experiences of transgender-related discrimination including not being able to obtain needed health care (Bradford et al.,

2013).

Healthcare institutions crate barriers for transgender people because they were not created with gender nonconforming people in mind. Transgender individuals have a distrust of the healthcare system and fear mistreatment within it; based on the results of

the National Transgender Discrimination Survey, 23% of respondents reported that at some point in the past year they needed health care but did not seek it due to fear of being disrespected or mistreated as a transgender person (James et al., 2016). When transgender individuals experience gatekeeping, a function of the healthcare system to restrict access, they experience more barriers to healthcare (Ross et al., 2016, Schulz, 2017). When transgender identity is connected to comorbidity, transgender people have more difficulty accessing medical resources and healthcare professionals (Dietz & Halem, 2016).

Transgender broken arm syndrome, or the misattribution of comorbidities, can cause misallocation of time resources, failing to address the condition they came in for, and erroneous attempts to change the course or regimen of hormonal treatment (Dietz &

Halem, 2016). When healthcare infrastructure does not consider trans identities, transgender people experience more barriers to care (Bauer et al., 2009). Institutional infrastructure is set up in ways that assume cissexuality and are thus often inappropriate for trans identities, trans bodies, and trans lives (Bauer et al., 2009).

Transgender Healthcare Intervention Recommendations

Many interventions are necessary in order to make healthcare a safe and helpful place for transgender patients. Certain types of research are also necessary in order to understand the changes that need to be made. Transgender health interventions need to be developed at every level including centering trans voices in research, changing healthcare systems to understand and accommodate transgender needs, training medical students

and healthcare providers to treat transgender patients throughout their careers, and changing healthcare office culture.

There is a lack of current research about transgender health and medical treatment as well as a lack of transgender voice within the research that is being done. When transgender people are involved in transgender health research, they experience more patient empowerment (T’Sjoen et al., 2017). Studies about transgender healthcare need to determine solutions to the barriers in addition to mechanisms to validate those solutions

(Safer et al., 2016), nothing will change without a way to implement solutions within the healthcare system. Research also needs to understand larger barriers affecting the ability of transgender people to access quality healthcare including societal stigma, mental health, and socioeconomic factors, in order to fully understand the needs of these patients

(Safer et al., 2016). It is recommended by research that transgender voices and stories are the primary material to help healthcare provider understand transgender lives and experiences because using “transparent data to inform practice and research questions holds institutions and researchers accountable to a public, community audience” (Blotner

& Rajunov, 2018).

It is important for all healthcare institutions to adopt gender identity nondiscrimination policies based on the needs of transgender voices. This can encourage the adoption of further plans including comprehensive transgender healthcare in both public and private insurance plans (APA, 2011). While policies have the potential to help protect transgender from people discrimination in healthcare and insurance coverage settings, they do not always prevent the things they are targeting and it is important to

consider the written policies as well as the implementation and enforcement of those policies. While there were added protections under the Affordable Care Act prohibiting discrimination based on gender, they do not necessarily “provide an explicit and directed protection of transgender people within the health care system, nor do they address coverage of specific treatments that transgender people may need” (Stroumsa, 2014).

Training for healthcare professionals should incorporate cultural competency for

LGBTQ communities, and in particular, transgender health, from the beginning.

Currently, most medical education about LGBTQ populations consists of singular attitude and awareness interventions and fail to teach the skills necessary to help queer and transgender patients like assessment, evaluation, and patient interaction skills (Dubin et al., 2018), studies recommend that education shift to interventions that are

“longitudinally integrated and clinical skills based.” When transgender health cultural competency, addressing attitude, knowledge, and skills, is integrated into medical education, it has the ability to break down barriers that transgender people face within healthcare (Dubin et al., 2018). Changing medical school curriculum as well as providing ongoing trainings for providers already in practice has the potential to improve doctor patient relationships. Certain practices should always be implemented such as listening to patients without judgement, using the correct name, pronouns, and gender label, examining and asking about only anatomy that is relevant, and using multidisciplinary techniques for treatment including “diagnostic assessment, psychotherapy or counseling, real-life experience, hormone therapy, and surgical therapy” (Hashemi, 2018).

Methodology

IRB Exemption

While oral histories center humans as the subject of their findings, they are exempt from approval from an Institutional Review Board (IRB) because they focus on individual experiences and do not produce generalizable knowledge (OHA, 2018). This thesis was exempted from IRB review because of its oral history format and open-ended interview guide. Oral histories are also exempted under the expectation that they adhere to the Oral History Association’s ethics guidelines as well as disclosure to participants about the nature of the analysis and distribution. All participants in this research signed a consent form detailing the nature of analysis and the potential for the interview to be distributed for public education purposes (See Appendix C).

Case Study

Kent State University is located in northeast Ohio. At its main campus in Kent,

Ohio, there are between 20,000 and 30,000 students enrolled at the main campus each semester (Kent State University, 2019), as well as over 3,000 employees. Kent State has a diverse student, faculty and staff population, with people from many different states and countries. Because all interview participants were Kent State University main campus faculty, staff, or students, it is necessary to look at the presence of transgender identity on this campus. Results from the climate survey done in 2016 show that about 1% of students identify as transgender or genderqueer (Kent State University, 2017). These results are not fully representative of the total population at Kent State University, and

historically, the transgender population is underestimated within survey data. This illustrates that over 300 students each semester could likely identify as transgender or nonbinary. (There is not an estimate for the number of transgender faculty and staff at

Kent State.) This research is designed to understand the experiences with healthcare from a few transgender and nonbinary individuals connected to the Kent State University main campus. Not all of the experiences are centered around Kent State and northeast Ohio, but all participants are connected to Kent State at the time of their interview.

Participant Recruitment

The interview participants were chosen to represent different transgender identities and different points of transition. Purposeful sampling was done in order to include participants with different experiences, transgender identities, and subsequently different interactions within healthcare systems. This broad knowledge is not designed to be representative of all experiences within healthcare or all people at Kent State, and therefore cannot speak to what the majority of people experience in healthcare.

To recruit interview participants, I used connections through the LGBTQ+ Center,

Transfusion, the student organization for transgender students and allies, and the Center for the Study of Gender and Sexuality to identify potential transgender individuals who would be interested in participating. This method resulted in a sample of convenience. A convenience sample is a nonprobability sample type in which all individuals in the survey population do not have an equal chance of being selected and are selected due to ease of participation (McKenzie et al., 2013). This research was specifically designed to center

transgender voices. I reached out to several individuals by e-mail. I received additional recommendations for interview participants from the initial interview participants.

Snowball sampling, or the method of recruitment where participants recommend other potential subjects (Oregon State University, 2010), was used to help find members of the underrepresented population to interview.

I communicated further with those who expressed interest in being interviewed through e-mail to set up a time and location for the interview. The time and location of the interviews were based on the availability of the participants. All interviews took place at Kent State’s main campus, either at the participant’s office or in the student center. A familiar location was prioritized in order to create a comfortable environment where sensitive questions could be answered openly.

By December 2019, seven transgender members of the Kent State community were interviewed. The interviews ranged from 40 minutes to just over one hour and were conducted in a public or private space on Kent State’s campus to ensure the comfort and convenience of the participants.

Analysis Methodology

Interview data was collected primarily in order to give back to the transgender community, showing broad themes of experiences in healthcare and concerns for the future that exist across the community, in order to give depth to quantitative data being done in medical research now. This data will become a part of the Kent State University

LGBTQ Oral History Project. Secondarily, data may be used in later published works as

well as training tools for healthcare professionals. To analyze the interviews for this thesis, guided by faculty at Kent State, I used a grounded theory approach. Grounded theory is useful for this research because it provides a way to analyze qualitative data by grouping ideas and concepts present in the data and not analyzing it through already existing academic theories (McKinney, 2019). The main themes and theories are developed from the qualitative approach and data itself rather than having theory drive the research questions and analysis.

The process began with the development of an interview guide based on prior research about the experiences of transgender people in healthcare and community knowledge. After, collection of qualitative data was done through video recording interviews with participants and their given consent. The interviews were then professionally transcribed. To analyze the transcripts, I read through each interview carefully to identify emergent themes using an open coding method. Open coding requires a close reading of texts in order to identify themes. I read through each interview carefully and used an open coding method to understand the data and determine emergent themes. Open coding consists of breaking down as many ideas as possible and labeling them to later be further analyzed (Given, 2008). The emergent themes then lead the further investigation of the transcripts as well as understanding the relationships between them.

Many themes were identified as emergent from the initial stage of coding including positive interactions with healthcare, negative interactions with healthcare, challenges navigating healthcare institutions, and responses to barriers in healthcare.

Emergent themes are then used to create a theory from raw data (Given, 2008).

Transgender experiences in healthcare serve as the basis for theory creation in this thesis.

In order to analyze the impact of each emergent theme, the process of axial coding was used to define the context and conditions of each as well as determine relationships between the themes (Given, 2008). A more focused coding was used to understand the experiences of transgender people in healthcare driven by several research questions that emerged from the data. These questions include: What barriers do transgender people face in healthcare? How do transgender people perceive barriers in healthcare? How do transgender people overcome barriers in healthcare?

A code to explore all of the questions was developed. These codes include lack of accessibility for transgender people in healthcare, systemic exclusion of transgender people in healthcare, interactions with “LGBTQ friendly” healthcare institutions, challenges interacting with insurance, lack of provider knowledge, importance of provider-patient relationships, fear of discrimination, and transgender community support. Lack of accessibility for transgender people in healthcare was further analyzed through the use of codes including gatekeeping and privilege. Systemic exclusion was further analyzed through the code: variation in health needs. Lack of provider knowledge was further analyzed through the code: reluctant treatment of transgender people.

Importance of patient-provider relationship was further analyzed through the code: gendering. Through axial coding, the data was able to be analyzed through lenses of academic theory. By developing theory from the data through a grounded approach, meaningful pieces were able to emerge naturally and then be connected to established

academic thought. Quotes are used within the analysis from each interview in order to illustrate this grounded theory technique.

This technique was used in order to center the voices of the participants in this research. Taking a grounded theory approach allowed for the voices and the experiences of the participants to inspire the research questions as well as subsequently make connections to outside academic understandings of healthcare. This research aims to understand the experiences of the transgender participants in healthcare settings rather than relying on academic theory to provide preconceived notions about what it is like to engage with healthcare as a transgender person. The interview guide (See Appendix B) was developed in order to encourage the participants in sharing their individual and significant experiences in healthcare.

Sample

The goal of this thesis was to gain a better understanding of transgender experiences in healthcare. However, the sample of this research is not representative of the demographics of the broader transgender community. All of the participants identified as white. Additionally, all of the participants had a strong connection to Kent State

University, an institution of higher education, showing that they all had relative privilege being connected to this environment. Furthermore, all participants have either completed a college degree or are actively working toward completing a college degree. Two out of the seven participants (29%) have completed a completed more than one college degree, and two out of the seven participants (29%) were working on completing a higher

education degree (Master or PhD) at the time of the interview. Three out of the seven

(43%) participants were working on their first college degree during the time of the interview, while five out of seven participants (71%) were students at the time of their interviews. Two out of the seven participants (29%) worked as staff members at the main campus of Kent State at the time of their interview. The age of the participants ranged from 20 to 45-years-old. Five out of seven participants (71%) were between the ages of

20 and 25, and the remaining two participants (29%) were both between the ages of 40 and 45 years old.

The participants identified as different genders and sexual orientations. These identities are important to explore because they can affect the way someone is able to interact with healthcare institutions safely and effectively. Five out of seven participants

(71%) were assigned female at birth and the remaining two participants (29%) were assigned male at birth. Gender identities that participants described themselves as include transgender nonbinary, nonbinary (void of gender, neither boy nor girl), transgender man, transgender woman, transgender female, woman, and man. Visual representations of participant demographics appear in Figure 1. Sexual orientation labels participants used to describe themselves include queer, pansexual, polysexual, asexual, lesbian, and demisexual. Many participants used more than one label to describe their sexual orientation as well as gender identity to present a more nuanced sense of their identities.

Figure 1

Participant Demographics

Race Age

White 20-25 years 40-45 years

Position at Kent State Educational Attainment

Undergraduate Degree Student Staff Post-Graduate Degree

Sex Assigned at Birth Gender Identity

Trans Masculine Trans Feminine Male Female Nonbinary

Limitations

Because this study is not a precise representation of the transgender population at

Kent State or larger populations, there was a lack of some demographics amongst study

participants. The convenience sample limits the extent to which the results can be generalized to the total survey population.

Healthcare is less accessible for those with overlapping marginalized identities

(Snow et al., 2018, Lopez & Gadsden, 2016, Seng et al., 2012). This research is analyzed through a lens of intersectionality, or the way people hold many identities that overlap and shape their lives and experiences. It is important to recognize other social factors and identities that can influence one’s ability to navigate healthcare institutions. This data set is unable to represent the full range of identities that people hold in addition to being transgender.

Specifically, this data set was not able to give insight into the ease of navigating healthcare systems for individuals who are transgender and also a racial/ethnic minority.

According to the National Transgender Discrimination Survey, transgender people who also belonged to a racial/ethnic marginalized group were more likely to have negative experiences with healthcare providers, be uninsured or under insured, experience psychological distress, and avoid healthcare treatment due to fear of mistreatment (James et al., 2016).

Most of the participants in this study were trans masculine, and it was therefore not fully representative of the issues that transgender women and trans feminine people face. Women have historically faced discrimination in healthcare, which pushes them to be less likely to utilize healthcare (Dehkordy et al., 2016). This can affect both trans feminine and trans masculine people when interacting with healthcare. This thesis does not explore the full extent in which perception of gender affects transgender patients

when interacting with healthcare institutions. Furthermore, low educational attainment, which is correlated with lower health literacy, is associated with increased difficulty navigating healthcare institutions.

Because all of my participants have completed a college degree and maintain a strong relationship with a university system, they are less likely to experience this as a strong barrier. Therefore, this thesis does not explore the full extent of how educational attainment and health literacy levels can add to the barriers of transgender people in accessing healthcare. Low educational attainment has been shown to impair the ability of people to navigate healthcare systems and effectively communicate and understand healthcare providers (Tienda & Mitchell, 2006). High health literacy is important to achieve positive health outcomes (Levy & Janke, 2016).

Seven trans people cannot speak for the whole of the community and a precisely representative sample was not used, however saturation was reached with the data from seven participants suggesting that many transgender people have similar experiences.

Because similar themes emerged across all interviews, this shows that data saturation was achieved. This research is not meant to produce generalizable data, but rather give insight into several specific transgender narratives about healthcare. That being said, the purpose of the oral history method is not to provide statistically accurate research, but to represent the nuanced and subjective truth of the individuals represented within this study.

Analysis

Throughout all seven participant interviews, many distinct topics emerged.

Healthcare was overwhelmingly full of negative experiences and challenges for the trans individuals in this research. All participants discussed specific, subjective experiences relating to their trans identity and healthcare. Many of the experiences related back to accessibility issues with both the challenges they faced and how to overcome them.

Directly within the topic of accessibility, participants expressed concerns with gatekeeping and their understandings of privilege. Systemic exclusion, variation in health needs, and insurance challenges were a topic of discussion among participants as particular issues to overcome, with “LGBTQ friendly” clinics being utilized as a tool to combat them, but not always to an advantage. The data revealed provider knowledge, with a reluctance to treat transgender patients, and relationships with providers, involving the gendering of trans patients as important topics of discussion, although they were not directly acknowledged. Finally, fear of discrimination and community support were prevalent within the data, as the participants discussed their experiences with them in relation to healthcare. The data collected for this thesis represents a nuanced understanding of the healthcare interactions among the participants interviewed from the trans community. A visual representation of the code frequency is presented in Figure 2 below.

Figure 2

Code Frequency by Participant

90 80 70 60 50 40 30 20 10 0

AJ Avery Elliot Emmett Erica Sean Sylvia

Lack of Accessibility for Transgender People in Healthcare

Lack of accessibility for transgender people in healthcare was mentioned eighty- two times among all seven participants in the interviews and was the most prevalent topic. Lack of accessibility to healthcare in many ways was a big concern and obstacle for each participant across identity, age, and connection to Kent State. Big topics within lack of accessibility were limited resources, concerns for safety, financial issues, and managing long wait times. The challenges participants faced related to accessibility included impacts on mental health, finding safe services, traveling to appointment, financial costs of healthcare, false barriers, and availability of resources and services.

Some of these topics are discussed more with gatekeeping and reluctant treatment. While

accessibility is its own code, all other codes relate to accessibility within healthcare for transgender individuals. Privilege and gatekeeping are directly related to accessibility and are coded to explore accessibility further, the other major codes were more prevalent and needed their own sections, therefore accessibility will be discussed through every section of the analysis. As one participant, Elliot,1 said, “Accessibility is probably the biggest thing.”

There are limited number of doctors who are willing to treat transgender people.

According to one study, many doctors are willing to treat transgender patients but a lack of familiarity with care guidelines and knowledge about transgender health may prevent them (Shires, et al., 2018). Transgender patients have to seek out specific doctors in order to receive transition related care. One participant named Sean2 described, “As an adult, it's definitely a struggle to some degrees because, I know for HRT specific healthcare you have to find a specific doctor. That doctor is typically quite a bit away.” A second participant named Emmett3 mirrors this sentiment: “To find somebody that is willing to work with you, with your hormones is extremely difficult. I know it's even harder in other areas, but in Northeast Ohio there's only a certain number of people that are willing to.”

Elliot, who works in the military explained, “in the spring of 2019, the Supreme Court got involved in the trans ban, and I either had to come out or not. I came out to the military in January of 2019, and I had to do it formally.” Without formally coming out to all of his work superiors, no healthcare could be administered to him from the military, and he risked losing his position because of his identity. Many participants expressed a frustration with finding doctors who would treat them, but one participant named AJ4

brought up, “you don't have to specialize in [LGBTQ health] necessarily to be able to serve LGBTQ people and to care about LGBTQ people and have queer people as patients, …, those types of resources are great, but they're not accessible to everyone.”

Safety is one of the biggest concerns for transgender people in healthcare. If the healthcare they seek and receive is not safe, it is not accessible. Sean has had multiple instances when his safety at a doctors was compromised because of his identity. He explained,

I was recently diagnosed with lupus, and I know I had a cardiologist at one point,

and told me that he thought my testosterone was affecting the problems I was

having, and I was like, "There's no research suggesting that. [...] There was one

point where he was basically saying that might be the problem, which I got a

second opinion, and they said the complete opposite. […] So, I would definitely

say that's one of those things, where it's impacting the level of care getting

because they're focusing on one thing, rather than what the actual problem is. And

then, that also makes me really anxious to go back.

Not only was his care compromised because of a preoccupation with the healthcare he was receiving related to his transgender identity, but it also instilled a distrust of medical professionals deterring him from seeking further care which could be dangerous with an autoimmune disorder. In another situation he explained,

There was something to where the doctor that I absolutely will not see, was the

only person with appointments open that day. So, I think I ended up waiting three

more days, to go see someone about my bronchitis, and I'm pretty sure that's why

I developed into pneumonia last year.

This further illustrates the danger that unsafe and unwelcoming healthcare providers can cause to transgender people both psychologically and physically.

Many participants faced financial barriers to getting healthcare. Research has shown that transgender people often put off seeing a health care provider due to lack of funds (James, et al., 2016). Emmett asks of his provider in his interview, “How can you make a promise that everything would be paid for?” and goes on to further explain, “so financial things in play too. In any case, that aside, I think it took another year before I even had the confidence to try another doctor.” Being told by a doctor there was financial aid, and then not being eligible not only kept him from receiving care in that instance but also from seeking out the healthcare for the next year. These barriers have long lasting effects on the lives of transgender people. One participant named Erica5 described an experience with difficulty paying for medication; “they tried to make me pay for all of my hormones out of pocket and my blood work that especially because of the time the estrogens weren't the nice ones that they have today. And it was like $2000 a month.” AJ described a similar situation: “testosterone is still a controlled substance in our country, and so like he had to drive all the way to Cleveland once to pick up the piece of paper that had his prescription on it and then drive it back to Akron and drop it off.” Financial issues can affect transgender people in many different ways. Not only do they have to find a doctor they can afford, but also make sure they can afford medicine, surgery, and be able to get to a provider in order to receive care. Prior research shows that some

transgender people have to travel more than ten miles for primary care, but many transgender people travel more than 50 miles for transition related care (James, et al.,

2016).

One major form of accessibility issues participants described was long wait times or being involved in long and time intensive processes in order to receive medically necessary healthcare. AJ described the process of advocating for transgender inclusive healthcare coverage at Kent State by illustrating a conversation between them and upper level administrators in the university: “you've been sitting across from me at these tables for a year and a half. This is what I'm going through. I need you to understand.” The long period of time illustrates the barrier for transgender people to get comparable health care coverage for medically necessary procedures. Often, transgender people have to prove their worthiness to people making decisions about their healthcare that have no experience with transgender people. Another participant named Sylvia6 described having to endure long wait times at a big LGBTQ inclusive healthcare institution:

I had to make an appointment maybe four or five months ahead of time and then

follow up appointments, I don't know, in a month. Well, there's reasons why you

need a month later for hormones specifically, but they cancel my appointment one

time and I had to wait another month, which was like, I'm trying to prepare my

life around this new thing about being trans and being on hormones. But yeah, so

I was let down once or twice. So whatever.

The end of this quote shows the desperation transgender people experience when trying to get appointments at healthcare institutions specifically centered around LGBTQ

populations. While these institutions should be more accessible to LGBTQ people, they often end up being less accessible because there a very few and it is hard to get a timely appointment. Not only is it hard to get an initial appointment, but because these institutions are overbooked, it is also harder to stay engaged in care and book necessary follow up appointments.

While participants discussed their own challenges with the accessibility levels of healthcare, they also expressed concern for fellow transgender people in acquiring competent services. Elliot expressed concern within the interview: “I just think that there's, on top of the financial aspect of accessibility that trans people face, additional barriers occur when it comes to finding providers that will provide affirmative care.” AJ further explained:

Not everyone can drive out to Cleveland to go to an LGBTQ clinic, and luckily,

we have one an Akron now, but like if you're here in Kent, Akron is still 20, 25

minutes away. Like can you get 20, 25 minutes away to see an LGBTQ

specialist?” While they acknowledge they are able to go far distances to see a

specialist, not everyone has the privilege.

This illustrates the idea that there is an important community element to transgender healthcare. Prior research emphasizes the importance of transgender voices within healthcare but fails to understand the role community plays in healthcare, and the concern transgender people have for their whole community. Transgender people rely heavily on each other to navigate resources in healthcare and make the field more accessible.

When participants were asked what they would change about healthcare systems if they could, every single one mentioned increasing financial accessibility and increasing the amount of affirming institutions, showing a need as a community to improve accessibility. Participants expressed ideas including: AJ said, “I'm a total proponent of free healthcare.” A participant named Avery7 responded, “I know the UK has free healthcare. And I feel that, that should be a thing, because people are going into debt and dying because of healthcare costs.” Elliot expressed, “I would rather my tax dollars be going to that than some of the other things my tax dollars are going towards, and for everybody to be able to get that same care.” Emmett said, “I think it would be important to get rid of insurance and do something like have a single payer or whatever thing.

Socialized medical care I think would be very helpful.” Erica responded, “As far as insurance, again, we need to get rid of these exclusions. We need people to understand that when someone has dysphoria, the treatment for dysphoria is transition.” And Sean wanted “universalized healthcare to making sure everyone got the coverage they needed.”

In addition to financial concerns, several participants also expressed a desire for medical professionals to be trained in affirming care: Emmett said, “I think honestly in doctor, nurse healthcare training, I think there should be LGBTQ affirmative training for everybody.” Erica wants “better training, early on for healthcare providers and that's everybody from the doctors to the receptionist to the phlebotomist to the janitor.” And

Sean said schools need to start “teaching doctors to specifically work with, or to adapt when they get new patients rather that aren't the typical demographic that they see.”

Gatekeeping

Gatekeeping was mentioned twenty-three times among all seven participants in the interviews. Gatekeeping is defined as the unnecessary restriction of resources or access to a particular thing. In prior research, gatekeeping has been shown to be a common practice that has been deemed unethical in the medical field that affects transgender people (Dubov & Fraenkel, 2018, Tomson, 2018). In this research, several participants experienced having to wait for resources, go through excess testing, and acquiring approval from certain sources in order to receive medically necessary healthcare. Gatekeeping can take many different forms and has an impact on the quality of care participants are able to receive.

One form of gatekeeping participants described and labelled was transgender broken arm syndrome. Erica described her experiences with a phenomenon called transgender broken arm syndrome after being asked about having to advocate for herself in medical setting, “Most of my issues were more with just ordinary health care.

Transgender Broken Arm Syndrome, things like that.” Transgender broken arm syndrome is a misattribution of comorbidity, or when a health condition unrelated to transgender health condition is attributed to the transgender healthcare one receives. This prevents transgender people from receiving adequate healthcare outside of transgender affirming healthcare and can result in dangerous conditions for transgender patients. AJ described their difficulty in navigating unfamiliar healthcare settings, specifically issues directed towards healthcare professionals:

It's like, I just need you to fix my broken arm. Like it's an arm, just fix it. They're

like, well, we don't really know how to do that for trans people. We've never

worked with trans people before. People hear trans and they panic if they don't

have experience with it.

This sentiment was mentioned by several other participants.

Another form of gatekeeping manifested in the form of excess approvals for medically necessary healthcare. Emmett described the extensive process they were put through in order to start hormone replacement therapy where:

Unfortunately, the doctor decided that they didn't think I was maybe serious

enough and that also because my family wasn't on board at the time and at the

time they had completely rejected me. Said, "Well let's wait and see if you can get

your family on board first. “Mind you, I was in my 30s. I think I have a pretty

good idea of who I was along with, I'd been seeing a counselor for quite some

time, a couple of years in fact. And we had a letter and at the same time made me

do all these really expensive tests that they lost. And then expected me to pay for

and then also expected me to take those tests again and pay for even to prove that

I was ready for all of this, even though they were unnecessary tests. So a lot of

hoops to go through even though saying like, "We're not sure that you're ready

and on board." I didn't quite get it. I'm still a little mad about it, I guess.

In another situation at a different healthcare facility, Emmett also described a similar situation in which he “went through a whole hour of an appointment and at the end [the doctor] said, "I've been told we don't have the policy or procedures to do this."…

“I don't get it. I don't get how hard that is with just continuity of care and they have a stack of all my records.” Other participants described similar experiences showing that this is an ongoing issue transgender people face in healthcare settings. Not only is it a barrier to start gender affirming healthcare but also to continue care.

Privilege

Privilege was mentioned twenty-four times among six participants in the interviews. Privilege is inherent advantages possessed by people in non-marginalized groups predicated on societal structures characterized by systemic inequality and oppression. Because all of the participants identify as transgender and with a diverse sexual orientation, none of them benefit from cisgender or straight privilege, however, they all hold other identities that afford them privileges including educational attainment, race and ethnicity, ability, and economic status. All participants recognized that not only do they have societal privilege that aids them in navigating healthcare systems, but that those that do not have those privileges may have a more difficult time navigating the same situations. The privilege the participants discussed was largely in relation to their education and level of medical knowledge, as well as their access to resources that others may not have. Many participants acknowledged that many social factors influence the ability to access healthcare and that many transgender people do not have access to which subsequently impedes their ability to get quality healthcare.

Multiple participants recognized the financially privileged position they were in related to their ease of navigating healthcare systems. AJ stated of them and their

husband, “We're very fortunate to have the coverage and that insurance that we do have.”

Elliot stated, “I know I've said a few times in this interview I'm in a really, really privileged situation. I can afford healthcare, because of the military and because I'm a graduate student, and my department subsidizes it.” Elliot also described how his degree helps him in healthcare:

I think I've been lucky, and I also think that I'm very privileged in being a scientist

and being very, because of my specific focused, being very engrossed in the

literature already, and having a really, really good understanding of physiological

systems…

Sylvia, when asked about how her identity influences her health status, described how she has the resources to not let that happen,” which is a “godsend.” Further stating that she is “privileged enough to not have physical ailments.” All three of the participants expressed that they have specific advantages in being able to interact with healthcare systems in different ways including knowledge, financial status, and health status.

Overall, the participants acknowledged the privilege they have which implies that others without these advantages may not have the same ease in navigating healthcare systems.

More than just implicitly, several participants also were concerned about the ability of others to access resources in order to get necessary healthcare. Elliot expressed,

“I definitely also see how individuals that aren't privileged in that way or don't have access to that information, people can try to take advantage of that even if it's not consciously taking advantage of that lack of information.” He is concerned for other transgender people because not only does he recognize that the privilege he has grants

him access to resources, it also presents a situation where those who do not are vulnerable to being taken advantage of. Elliot, Erica, and Sean all described that they were “lucky” in being able to find a transgender friendly doctor. They all acknowledge that having a good doctor is an essential part of receiving quality healthcare, and they were only able to find that through luck, while others struggle.

Systemic Exclusion of Transgender People in Healthcare

Systemic exclusion of transgender people in healthcare was mentioned thirty-four times among all seven participants in the interviews. Throughout the interviews, it became apparent that healthcare institutions were not built with transgender people in mind. This created unforeseen issues for the participants. While several participants encountered issues with specific people or specific programs, they also were able to acknowledge that it was likely not an isolated incident. For example, Sean explained that as a whole, doctors do not understand how to care for transgender patients:

I would definitely say it's systemic too, I don't think you can put the blame on one

specific doctor, when there's this whole medical school that didn't ... He had to go

to medical school somewhere, and they obviously did not teach him how to deal

with transgender patients. It's not going to be that one medical school. It's going to

be a lot of medical schools. So, that becomes an issue across the board if these

doctors don't know how to deal with trans patients, which can be scary and

dangerous. I think.

While Sean may have had an issue with a specific provider, his true issues lie with a system that allows for doctors to be ignorant about how to treat potential patients. Not only do medical schools not properly prepare providers, but the systems they work with also make it difficult to accommodate and account for transgender patients’ needs. Erica explained, “I'm running into, especially computer systems, that have no idea how to deal with a trans person. You want to throw a medical computer system into a tizzy, tell that you want a PSA test and a mammogram.” Avery, a nonbinary participant, explained, “It's very female to male, male to female. Like those are the way the policies are written.”

Regardless of the type of transgender identity, participants faced barriers receiving care that understood them as a whole person with complicated needs. When the systems do not include transgender people, they are not able to get proper care and subsequently maintain proper health.

Variation in Health Needs

Variation in health needs was mentioned twenty-seven times among all seven participants in the interviews. Current research does not investigate the differing needs of transgender people across gender identity, sexual orientation, race, age, and comorbidities. Elliot explained,

I have nonbinary friends that they are on testosterone, but they don't want top

surgery, and healthcare providers are confused by that dichotomy that they're

being presented with like, "Oh, you don't want top surgery, but you're on

testosterone. What is your..." A lot of providers are very goal-oriented, getting to

an end state, and some individuals don't necessarily have that defined, which I

think is really confusing to providers.

The transgender community is diverse, and the healthcare system needs to reflect the variation in identity. AJ explained the needs of them and their husband, “we’re both trans and we both have different needs for that trans-ness because we're trans in different ways,

I guess is the best way to say it, and our treatment is different from a medical perspective.” When providers are confused by an identity it can prevent a transgender person from accessing the care that they need. Avery shared, “I haven't gone on hormone therapy or anything because I float in that nonbinary space and I also just don't like hormones.” Many policies require HRT in order to qualify for surgery or prove a transgender identity, however this does not fit the needs of this nonbinary person who does not need hormones to progress in their transition. It is crucial that providers and the system understand this because, as Emmett explained, “you're in a very vulnerable position with a doctor. You're putting yourself in their care. You need somebody to care about you unconditionally.”

Interactions with “LGBTQ Friendly” Healthcare Institutions

Interactions with “LGBTQ Friendly” healthcare institutions was mentioned thirty- two times among six of the seven participants in the interviews. LGBTQ friendly healthcare clinics are institutions directed toward LGBTQ people and are supposed to be safer and more welcoming than traditional healthcare institutions. Often, they include different types of services and have in house specialists like psychologists, psychiatrists,

and endocrinologists in addition to primary care services in order to create a one-stop- shop experience for patients. While these clinics present an opportunity for LGBTQ people to have a positive experience in healthcare, there are many barriers associated with these types of clinics. The quality of care and transgender people’s experiences with these types of institutions are not well researched. It is important to understand these elements because it is not clear if LGBTQ people are actually receiving the open and affirming care they are seeking out in these places.

Many participants described seeking out these clinics, even if that meant travelling further than usual to get to a healthcare appointment. Sylvia explained that she specifically sought out “LGBT friendly” healthcare institutions because she felt safer and more understood at them, but she had to find them and get to them. She explained,

I was kind of forced to go to places that I could ... the accessibility thing is my

psychologist as far away because she's great at what she does, but it's also there's

nobody closer. There's nobody closer when I was living in Montgomery County,

but it just so happened I was lucky enough to drive an hour to Philadelphia when

so many people can't do that. There's people in Philly that can't go to Mazzoni

Center.

She acknowledges that although she is able to drive long distances to get to these places, not everybody is able to. And, if every LGBTQ person in the region of these clinics went to them for healthcare, they would not have the resources to serve everyone. There is also potential for a person facing issues with how patients are treated. AJ described why they seek out LGBTQ friendly clinics for their healthcare,

When I go to an LGBTQ place, there's at least the expectation that you'll have to

do that less. I emphasize expectation because it's not always the reality. I mean

I've been to the LGBTQ clinics at Cleveland Clinic, at Metro Health, and then

we're going to go to the Summa one. So I've experienced all of them in this area

and I've still been misnamed at those clinics. I've still been mis-gendered at those

clinics. I've still had the wrong pronouns used at those clinics. So I mean like,

they're not perfect systems. But I at least know that I don't have to start from

square one all the time and I at least know that everybody there at least like

agreed to work there, so to some level they have to at least be okay with

interacting with LGBTQ plus people.

While they acknowledge, that there are issues with these types of institutions, they prefer them over taking a chance at a traditional healthcare institution.

Many participants discussed their negative experiences with LGBTQ friendly clinics. Multiple experiences centered around specific providers. For example, AJ described an experience with a doctor at the Pride Clinic, an LGBTQ friendly clinic in

Cleveland, Ohio, “one doctor made a joke like, oh yeah, you just want to be part of the itty bitty titty committee. And I was like, yeah, I'm never coming to you ever again. So I never went to him again.” Other experiences focused on working with these institutions as a whole. Emmett described his experiences at the Pride Clinic,

I first went to the LGBT Center in Cleveland and that was horrific for me

unfortunately. Because not only is it difficult to get in because there's a long wait

list, but they're only open certain hours, certain days of the week. And when I got

there, I was trying to get on the long list, I had my letter and everything. And

unfortunately, the doctor decided that they didn't think I was maybe serious

enough and that also because my family wasn't on board at the time and at the

time they had completely rejected me.

The experience at a specific clinic illustrates issues LGBTQ people can have, even at

LGBTQ centered services. It can be dangerous if these clinics are open and affirming in name, but not in practice. While they provide resources to an underserved and vulnerable community, it is also important that they provide a certain quality of care that actually helps LGBTQ people, and particularly transgender people. AJ explained this danger,

I think that having the LGBTQ like clinics and stuff is really useful. But I also

think it perpetuates the problem that we have with healthcare where physicians

think that they can't help LGBTQ people because they're not an LGBTQ specialist

or they don't work in an LGBTQ facility. Like any general practitioner can work

with LGBTQ people. They have all the skills, all the training. Do they need to

learn how to interact with that community respectfully and inclusively? Of course.

But from a medical perspective, they know everything that they need to know and

they may just have to adapt some things or read a chart differently or blood levels

may have to look different for a trans man than a cis man. They need to learn

those pieces, but the basics of healthcare are universal for any person, regardless

of what community that they belong to.

Erica reflects this sentiment in her thoughts about LGBTQ friendly healthcare institutions:

It really just comes down to the fact that we're still a fairly invisible minority and

somebody could say, oh yeah, I'm trans friendly and this and that, but they don't

know what it actually means to be ... They don't know what they don't know. And

oftentimes it comes down to that cultural competency piece not the medical

knowledge.

Challenges Interacting with Insurance

Challenges interacting with insurance was mentioned twenty-nine times among all seven participants in the interviews. Barriers in obtaining insurance and getting coverage for transition related care were very prevalent topics within the interviews. The rate of uninsured respondents to the National Transgender Discrimination Survey

(n=6450) was nearly double the rate (14%) of the overall national rate (9%) in 2016

(James, et al., 2016, Cohen, et al., 2017). A quarter of the respondents to the National

Transgender Discrimination Survey reported having issues with insurance related to their gender identity including being denied coverage.

Several participants explained minor challenges in navigating health insurance systems. Emmett described their dependence on insurance coverage to see a doctor,

“once I found a doctor that was willing to prescribe to me the testosterone, that was easy and I stuck with him as long as my insurance would cover him.” He goes on to further explain their current issues with insurance; “I have to go to Cleveland now to see a doctor that's on my healthcare plan that's willing to see me, which I feel is ridiculous since I

have the student insurance.” Elliot, who is on Kent State’s student insurance described his struggles with misinformation,

I was told multiple times by multiple different people that the student health

insurance didn't cover surgeries. So I had been trying to save money for top

surgery and trying to figure out my life a little bit as to how to afford it, but I

actually ended up just trying the insurance with it just to see, try to get a pre

auth[orization], and they ended up authorizing top surgery, which was nice, which

was a surprise because, I guess, that hadn't happened before on the student

insurance as far as Kent State knew, but they do a pretty good job. Even though

there's a referral requirement in the student insurance, I haven't had to have a

referral for trans-related care.

A similar situation is described by Sean with misinformation, but he also faced an accessibility issue at the same time, being forced to drive hundreds of miles just for regular checkups because of an insurance restriction. When asked about how it is to navigate insurance he said:

God it's a fucking nightmare. So, before I turned 18 I think I was on Maryland

State Insurance, which is fine until you go to college outside of the state of

Maryland. So, it was really hard for me finding places around here that took it.

So, I kept having to go back and forth to Baltimore for my T appointments. And

then, once I graduated out of Maryland insurance per se because I was no longer a

minor. I got on the Kent State Insurance, which is great because they cover trans

health care and things of that nature, until the doctor's office, mis-bills things.

And then, there's not, there's a lot of anxiety around that too.

These experiences highlight the important role insurance plays in our healthcare system, and how it presents just as big an accessibility issue as unsafe healthcare providers themselves. While current researchers detail gaps in coverage for transgender people, it fails to detail the effects on their lives and subsequently their quality of care.

Erica described the fortunate situation to have transgender inclusive healthcare from their employer, “luckily I work here at Kent and we have very good trans inclusive healthcare coverage, but we just got that a couple of years ago. Two years ago now.” AJ, who works for Kent State described in detail the process to obtain transgender healthcare coverage for faculty and staff:

It was one heck of a process. Took us about a year and a half I think total from the

time we sort of started the conversation to when it actually went into the

healthcare. But we had so many meetings. We had to sit down with the several

vice presidents of the university. It had to go through cabinet. We produced so

many documents of like justification and you know resources and research that

backed why having trans inclusive coverage is important. Research of other

institutions who have trans inclusive healthcare coverage for their employees and

what that looks like. We had to show like budget issues, because that was always

the pushback. It's going to cost too much money if we let all these trans people go

out and do all these things. Like dude, you have like maybe 10 trans people that

work here, maybe. And that's assuming all of them will want surgeries of some

kind, which is not the case. And so like we had to explain to them that like, it's not

going to be this multimillion dollar project. Like we're talking about a few

handfuls of employees who need to get this stuff done in order to be happy and

healthy and be who they are, and we want our employees to be happy and healthy

and fully who they are if they are going to work here for us. That's our goal as an

institution. And if we don't have trans inclusive healthcare coverage, then we're

not doing that for all of our employees. And so we had to really get that narrative

to be understood and all the research and all that, everything in the world was

great, but they didn't really budge until a couple of us came forward and shared

our own personal experiences and our own personal stories with it. And so when

they were able to put like faces to the cause, I think that's what really made a

difference. And that took a lot, you know, for people to come forward and say, "I

am trans and this is what I need and this is what I need to do and you're not letting

me do that and I'm not able to be happy and successful and healthy because you're

not able to provide these things for me.

This process brings in a lot of relevant topics in the data. The resource group for LGBTQ faculty and staff worked together to fill this gap in healthcare coverage. They relied on each other to tell their stories and follow through with the policy change. It took work not just from transgender individuals, but the community at Kent State. They were concerned as a community for each other’s wellbeing and financial accessibility to healthcare. It highlights the issues with seemingly LGBTQ friendly and supportive institutions; while

Kent State claims to support its transgender faculty and staff, it was failing to provide

actual support for transgender people in healthcare. This deeper consideration of accessibility needs to be considered in order for transgender people to truly be able to get quality healthcare. While it took a long time, they were able to get the coverage for transgender people. AJ explained later that even though they were able to get coverage through Kent State, it still was not always easy to navigate and use, “when Jess first put forward for his top surgery it got denied and so then I had to call and they hadn't updated

Kent State's policy in their system, and so like it gets messy with that kind of stuff.”

Lack of Provider Knowledge

Lack of provider knowledge was mentioned forty-eight times among all seven participants in the interviews. Sean explained the extent of this issue in discussing experiences with healthcare providers, “they're not going to really understand what to do with me because I'm trans, or I'm, they're not going to understand how my testosterone plays into the rest of my medications and stuff like that.” While it is known that 15% of respondents to the National Transgender Discrimination Survey experienced a healthcare provider asking unnecessary or invasive questions (James, et al., 2016), there is a lack of research beyond that on transgender healthcare and best medical practices for transition related interventions. Sylvia described feeling like an experiment,

I don’t think they see or have even imagine treating someone with who is

transgender. Because I think a lot of people still view being transgender as some

kind of thought experiment, that it’s like, “Okay, if I go to medical school and

then learn all this stuff, but then there’s this outlier, how do I treat this trans

person?”

This is not an isolated experience because Elliot discussed the issue in larger context, “I think it honestly comes from the educational models that they're trained on. […] The

MDs that I've seen are very, "Here's the problem. Fix the problem," and they don't take a wholistic approach to a person.” As well as AJ stated:

They were like, well, we don't know how to... We're not trained in this. We're not

LGBTQ specialists. We don't know how to work with trans people. We don't

know how to do hormones. Like you know how to take blood. You know how to

test blood. You know how to write prescriptions. You know how to do all of these

things, it's just doing it for trans people.

While many participants discussed experiences with doctors not knowing or understanding the best medical course of treatment, experiences with doctors being ignorant or transphobic. Multiple participants described experiences in which a provider lacked the knowledge to interact with them respectfully. Elliot had an issue with a facility and being paired with unfamiliar providers:

You get different providers almost every single time you go and don't think that

they're asking questions out of anything other than what they deem as medically

necessary, but sometimes, it's frustrating having to explain my entire medical

history to somebody and further explain why I'm on certain medications, and why

I had certain surgeries, and why things are the way that they are.

Erica had an issue with a specialist not knowing the care they needed:

They just often end up displaying a significant amount of ignorance. I had a

gynecologist who had actually just examined me, ask if I had retained any

testicular tissue. Not sure why I would or how that's just kind of base level

knowledge. But it's specific to trans people. My GP was surprised to learn that I

still had my prostate because getting to that is really intense surgery and really

invasive and doesn't serve any purpose in surgical transition.

AJ described this issue with the healthcare system at large:

I think we have a lot of work to do. I think that LGBTQ patient care should be a

basic understanding. Should they teach it in medical schools? Sure. Great. Should

they be teaching it in nursing schools? Yes. Great. Public health, whatever. Like

incorporating LGBTQ pieces into the basic medical care that people are taught

right from the get go so that people understand that there isn't some magical new

thing that you need to learn in order to be able to do this. It's just one segment of

the population that you're going to be working with. You need to understand some

nuances with that, but other than that, it's the exact same thing as what you're

doing for everybody else.

Not only does there need to be an increase in the amount of research done on transgender health, but providers also need to be trained in cultural competency to understand how to best interact and serve transgender individuals.

Reluctant Treatment of Transgender People

Reluctant treatment of transgender people was mentioned thirteen times among six of the seven participants in the interviews. Reluctant treatment ranges from an unwillingness to treat transgender patients to blatant refusal of treatment. Results of the

National Transgender Discrimination Survey show that 8% of respondents experienced a healthcare provider refusing to treat them regarding transitioning (James, et al., 2016), but many of the participants in this research had more experiences with providers reluctant to treat them for reasons related to their identity than refusal of treatment. There are also different parts of the healthcare system participants had issues receiving treatment from.

Multiple participants had issues finding providers that would help them start and continue hormone replacement therapy. Sean explained, “there are only certain doctors that will prescribe testosterone, and so those are the specialists that you have to go to for that.” To find a specialist presents an accessibility issue because they are harder to get covered under insurance and there a severely limited number who are able and willing to work with transgender people. Not only is there an issue with providers prescribing hormones, but there are also issues in actually receiving the medication from pharmacies.

AJ explained,

We get up to the pharmacy and they're like, "Oh, well it's only 10 milliliters and

you want it in three month doses, but this is only two and a half, so we're only

going to give you three vials and then you'll have to come back and get like the

next three vials and then the next three." Just give me the damn medicine. Like

what is your problem? I don't understand why this is so complicated. It drives me

nuts. Every time he needs to refill his prescription is like one of the most anxiety

inducing moments of my entire year is refilling his damn testosterone

prescription.

These quotes illustrate the many barriers transgender people face when interacting with healthcare systems as transgender people. When it comes to transgender healthcare, providers are reluctant to engage because they are unfamiliar with transgender care, even though transgender people are also people, and they likely have experience in treating people. As AJ explained,

As soon as they hear trans, they freak out. And they're like, oh, I don't know how

to do that. I'm not trained. I'm not a specialist. Like there is no being a specialist.

There's not like some certificate or something that you get in being a trans

specialist. Like you just learn how to work with that community and you use all of

your other medical knowledge exactly the same way as you've always used it and

you just apply it to this community. Like it's not rocket science. It's medicine,

right? It's also just as complicated, but it's not as complicated as what I think

people think it is.

The providers reluctant to treat transgender people present an unsafe barrier to healthcare for the transgender community as a whole.

Importance of Provider-Patient Relationships

Importance of provider-patient relationships was mentioned forty-five times among all seven participants in the interviews. Current research about transgender people in healthcare fails to explore the connections transgender people form with their providers and how those relationships can help make healthcare largely more or less inaccessible.

AJ explained the different information they were willing to share with different types of providers because of the restrictions that might have resulted from it:

I was much more open with my counselor and my GP about everything. But then

I sort of flew under the radar when it came to like the surgeon and the

endocrinologist and the insurance companies, and I kind of fuzzed the lines a little

bit with them, whereas with like my actual doctor and my counselor, I was much

more open about my identity. So it's just kind of picking and choosing how to

exist in what space.

The details of difference in relationships with different providers shows how valued the relationship with a primary care doctor was to the participant while with specialists, they did not feel comfortable discussing the full extent of their identity. Often there can be restrictions to surgery and treatment based on the way one identifies which this participant feared as a nonbinary person. Avery did not feel comfortable at all coming out to their healthcare providers describing the coming out process as a “hassle,” but would consider it if there was a system put in place like writing a preferred name down on a form. Emmett described the ease of getting HRT after finding the right doctor, “I finally

found another doctor, he prescribed my testosterone right away that that day. As soon as it came in, I was giving myself shots like it was fine.” Elliot went into detail about the importance of being respected by a healthcare provider and valued as a transgender patient:

My provider was actually fairly open and receptive to reading literature and

gaining more knowledge, and it seems as though he's genuinely vested in treating

trans patients. He has a genuine interest in it, and it's not just something that's cool

or to get new patients. He genuinely wants to help, but I think sometimes

providers are even misinformed and lack the knowledge necessary to treat trans

patients, which is also a problem because there's already lack of availability of

care for trans people, for physicians and NPs and other providers willing to

provide that care, but then where is the line of informed providers and the amount

of providers that we need to treat trans people.

This positive experience highlights the need for providers to listen to their transgender patients and do the work to understand them and their health. Sean described the difference between two providers, and how building a good relationship with his current one helped him realize the quality of care he needed:

Yeah, I would certainly say so. I know with my first HRT doctor, he wasn't the

best at working with bigger people, and so that was definitely a limit to where he

was, "If you gained weight we're going to have to lower your dosage." Almost as

a threat, and my doctor now doesn't do that. And it's seeing an example of what a

good doctor is, definitely makes you look back, and go, "Well that's shitty, that

didn't have to happen." So, things like that, it's definitely hard to navigate what

you need done sometimes because you're not the doctor.

Having a bad relationship with a provider can present a barrier to receiving healthcare just as much having a good relationship can break down barriers. Because the majority of trans individuals experience issues with providers, this issue needs to be addressed on a population level among healthcare professionals. All providers should understand how to work with diverse patients. Not all transgender health needs are straightforward, however, listening to patients needs should be.

Gendering

Gendering was mentioned twenty-one times among all seven participants in the interviews. Being gendered includes when a person is referred to with an element of their gender. This centers around both name and pronouns, but it can include other identifiers.

When a healthcare worker fails to use the correct name and pronouns for a transgender person, it can cause distress, and signal to them that they are not valued or safe in this space. Avery explained that at Deweese health clinic, “they do have your pronouns and your name and stuff in the system, but it doesn't always work out. I still get misgendered; they still use the wrong pronouns. It's, so I'll just kind of suck it up and deal with it to be honest.” Having to suck it up signals that the healthcare provider does not prioritize their needs. The misgendering is not always as benign. This can be seen through Erica’s experience with a doctor, “his comment was that that made sense to him because although I could change my body, I still had a male brain. Not how that works. That

really triggered a lot of dysphoria for me.” Not only can it trigger dysphoria with lasting effects, but misgendering can also have other emotional and physical wellbeing ramifications. Avery further explained,

It's just like, I dread going. Because there was a time where, Deweese, their track

record, so to speak, was just really bad with using my name, and not my legal

birth name. They were just God awful about it and it just caused me anxiety to go,

because I did not want to hear it because it makes my skin crawl. And eventually I

filed a couple of formal complaints with them and it quit.

The burden often falls on transgender people themselves to fix the situation. Within healthcare when patients, especially those with a marginalized identity, are in a position with less power, it is unrealistic to expect that they should bear the burden of making places safe. It presents an issue for transgender people in finding safe and affirming healthcare institutions which can make healthcare largely inaccessible for those who need their correct name and pronouns used to be free of stress and maintain proper health.

Fear of Discrimination

Fear of discrimination was mentioned forty-four times among all seven participants in the interviews. Many other emotions were described within the interviews including frustration, anger, sadness, and distress, however, fear was by far the most prevalent emotion mentioned. Prior literature lacks depth in understanding the emotions of transgender people when interacting with healthcare systems and instead focuses on their more tangible experiences of discrimination like instances of harassment or refusal

of treatment. Prior studies have merely shown that many transgender people have avoided getting necessary healthcare due to fear of being disrespected or discriminated against (James, et al., 2016).

It is important to understand how deeply discrimination in healthcare affects transgender individual’s lives and how the emotions produced from it can be ongoing and long lasting as well as impact their ability to get further care and maintain their health when professional healthcare is necessary. Emmett described how it can be “horrific” to be called by the wrong name and pronouns when other people can hear it as well as the

“mental struggle” that transgender people go through in doctor’s office. This illustrates how seemingly small things like not using the right name and pronouns to someone who is not transgender, can have a strong impact on the mental health of a transgender patient.

In many different parts of the process being transgender can cause anxiety and fear for transgender individuals. Several participants discussed such fears: AJ explained,

“trying a new doctor, sometimes that's a really scary experience because you're just not sure how it's going to go,” “I didn't really tell people I was non binary at that point because I was worried that they weren't going to understand what that was and therefore they weren't going to approve me for the surgeries,” and “one of the most anxiety inducing moments of my entire year is refilling his damn testosterone prescription.”

These examples take place before finding a provider, talking to providers about necessary care, and filling prescriptions. In no part of healthcare are transgender people free from fear of being discriminated against because of their gender identity and healthcare needs.

This can deter transgender people from seeking the medical care they need, presenting an

accessibility issue. This phenomenon is linked back to social determinant of health including cultural beliefs rigid in gender roles and biased against gender diverse people.

Transgender Community Support

Transgender community support was mentioned twenty-nine times among all seven participants in the interviews. Using transgender community support adds another layer of safety in healthcare by helping transgender people find affirming healthcare institution before potentially being exposed to transphobic situations, which in healthcare can be physically dangerous. By using their community, transgender people are able to keep each other safe, and make healthcare safer as a whole for transgender patients.

Emmett explained the depth of transgender community support in healthcare:

Yeah, we do. There's a lot of networking. Either face to face or on social media,

Facebook, websites. There's a lot of I guess crowdsourcing information about

trans health and, "Hey, what doctor do you go to? Are they trans friendly? Do

they know that you're trans?" Because some trans people will go to a doctor and

not tell them that they're trans if it isn't to do with hormones. Yeah, there's a lot of

just crowdsourcing that information. Word of mouth goes real quick. And so if

they've been to a doctor, if there's been bad experiences, everybody's going to

avoid that doctor like the plague. It really could be in doctor's best interest to

decide to take on trans affirming care.

Transgender people rely on each other to stay safe, and there is a sense of mutual responsibility within the community because it is quite universal to have trouble

interacting with healthcare institutions as a transgender person. Emmett discussed, “I found out about Dr. Nichols through another trans male friend and he's like, "Yeah, go to this doctor. He's really awesome. He sees you as you are.” This is positive experience being shared throughout the community, however, it is also useful for transgender people to share information about bad experiences. As Sean described, “There's one doctor at

Deweese that I really don't want to see because of my friend's [bad] experience, and just,

I get nervous sometimes when I have to go [to Deweese Health Center].” This shows the range of information about healthcare a transgender person would turn to fellow trans people for and makes healthcare more accessible for the entire community.

Discussion

The analysis in the preceding section connects back to previous literature in many ways. Prior research largely focuses on quantifying certain experiences of transgender people in healthcare. This includes experiences such as interacting with providers with a lack of familiarity with treating transgender people, not being able to afford healthcare and particularly transition related care, having to travel great distances to get to a doctor, medical gatekeeping, challenges getting insurance, being refused treatment, and having providers ask invasive questions. Within this research, participants discussed many of those common experiences. All of the experiences relate back to the larger accessibility issue for transgender people in healthcare, which was most prevalent among the data.

Accessibility to healthcare for trans people can be traced back upstream to several factors, that are seen within broader context of society, which are evident throughout the interview data. Impacts from the prior research suggest that healthcare is a challenging place for transgender people to interact effectively. Challenges interacting with healthcare systems for transgender people are well documented, but with less depth.

Quality healthcare has larger ramification for individuals than just being able to maintain proper health. Even more so, when low quality of care is the standard among a population it can have an impact on an entire population’s ability to survive and thrive.

Prior literature does not provide many insights on the long-term emotional and wellness impacts to transgender people trying to navigate a healthcare system that was not designed to include them. This study shows that transgender people not only face

discrimination and accessibility barriers in healthcare, but those experiences have long lasting effects on their ability to live as their authentic selves and maintain their general physical and mental health.

Previous research places a strong emphasis on quantifying the instances of discrimination that transgender people commonly face in healthcare, as well as clearly labeling those experiences. While experiences are well documented in prior research like being denied for insurance coverage, misgendered, harassed, mistreated, or refused treatment, the current information in the literature lacks a depth to those discussions as well as transgender voices. The participants in this study did not mention extreme mistreatment often cited in current literature. This could be a limitation to the scope of this research and the number of participants interviewed as well as their demographics.

Context is necessary to understand these experiences, especially when prevalent among a marginalized population because they do not happen in a vacuum. In accordance with a health equity framework, inequities in healthcare can be traced back to factors in society including social inequities, institutional power, and discriminatory beliefs. Therefore, in order to address the prevalence of both unsafe conditions and inequities in healthcare for transgender people, these larger factors must also be addressed.

One limitation to this study could be that participants were not directly asked about the emotions they experienced while having to interact with a challenging healthcare system. It could be that within these participants, they find healthcare more emotionally taxing. There is room for further exploration about how healthcare impacts the emotional wellbeing of transgender people and subsequently their ability to keep

themselves healthy. There is also opportunity to explore how other challenges in a transgender person’s life are linked to their health status and experiences in healthcare because it can prevent one from living as themselves. Physically passing is often linked to other privileges in society like obtaining housing, work, and general respect. While this is true, it is problematic to link basic needs to physical appearance. If the healthcare system prevents a transgender person from achieving the physical attributes in order to confidently navigate the world, discrimination within this setting can be a barrier to much more than simply having surgery or hormone replacement therapy. Healthcare is an upstream and downstream factor for transgender people living a stable and healthy life.

One topic not well researched is the use of LGBTQ friendly clinics by transgender people. While they are hailed as an accessible healthcare space for transgender people free of discrimination, many participants discussed barriers they faced at these establishments. While there is a connection back to prior research, many transgender people have to travel great distances for transition related care, many participants cited experiences at LGBTQ friendly clinics that involved challenges in receiving their transition related care. The level at which their types of healthcare institutions are able to truly meet the health needs of transgender people as well as breakdown accessibility barriers needs further research.

It is well established that the more marginalized identities a person holds, the harder it is for them to navigate healthcare systems effectively and subsequently maintain health. Because of the demographics of the participants in this research, they detailed experiences through their privilege as white people and being connected to higher

education as well as other more specific circumstances. Rarely is the function of privilege in healthcare studied, rather the effects of lack of privilege is more understood. This data adds to prior literature by demonstrating how societal privilege is understood among a marginalized group to help them in certain areas. The discussion of privilege also adds to the insight on community support, as the participants acknowledged several times how other transgender people in less privileged positions are not able to overcome barriers as easily.

Prior literature suggests that many transgender people have common experiences in healthcare as well as the importance of social support in order to maintain good health.

The findings in this research about the transgender community’s reliance on mutual support in healthcare adds to this sentiment. This data shows that many transgender people turn to each other for medical advice rather than to family members or professionals. This can also be linked to prejudicial societal conditions because transgender people face heightened barriers navigating many areas of life. This data specifically demonstrates ways in which transgender people form community in life, and then use that community to protect themselves from harmful experiences in healthcare because the healthcare systems cannot be trusted to be safe.

Conclusion

There are clear challenges transgender people face when interacting with healthcare systems according to this data. Most prevalently, transgender people struggle with accessing and effectively using health resources. By using an oral history methodology that utilized an open-ended interview guide, participants were able to subjectively and honestly discuss their experiences in healthcare, the importance of how healthcare challenges impact different parts of the participant’s lives including mental health and wellbeing as well as the ability of the participants to interact with the world as their authentic selves. On several occasions, participants discussed the frustration, anger, anxiety, and fear that discrimination in healthcare settings has caused in their lives. This shows that not only is healthcare connected to a person’s health status, but also to every part of their life.

Several participants shared that, despite the challenges they faced in finding a healthcare provider or affording medical expenses, they found ways to overcome them.

Participants showed that they were able to build meaningful and respectful relationships with their providers in order to receive quality healthcare. The analysis explored the depth of issues in healthcare for transgender people, ways to navigate the difficult system and how to improve it. Many participants also acknowledged that not all transgender people have the ability to overcome these barriers, and their ideas for improvement centered around that sentiment.

Recommendations

There is much opportunity for future research to be conducted on the experiences of transgender people in healthcare. The accessibility of healthcare for transgender people and the long-term effects of challenges interacting with healthcare on overall wellbeing could be centered in a research project to be further understood. The mental health and wellbeing effects of mistreatment, harassment, and assault could be further explored, as it is a well cited occurrence among transgender people in healthcare, but not discussed by the participants in this study. The use and efficacy of LGBTQ friendly clinics could be more extensively studied. While it was well discussed among this data, there are little to no quantitative studies about these healthcare institutions. This research can also be extended to healthcare professionals and the challenges they see working with transgender patients. While discrimination of transgender people in healthcare is well documented, there is less data on the sources of that discrimination within the healthcare system. Both sides of the provider-patient relationship can bring insight into changing the healthcare system for the better.

Major healthcare reform is also necessary in order to create a welcoming environment in healthcare for transgender people. This starts at the broadest level in this country with federal policies. Financial barriers were a major concern among participants, for not only themselves but other trans people. Healthcare reform that guarantees not only available healthcare coverage, but truly accessible healthcare coverage for all, will tremendously benefit transgender populations, marginalized populations, and everyone that lives in the United States. Provisions in the Affordable

Care Act are not enough; transgender people need channels of recourse when they experience discrimination in these spaces. Not only are stronger regulations needed to protect trans people, allowing them to safely interact with healthcare institutions and get adequate medical coverage from insurance providers, but they also need legal channels to report and enact change when practitioners and providers make healthcare inaccessible.

Medical schools, nursing schools, pharmacy schools, and healthcare administration programs all need to implement comprehensive training and cultural competency regarding LGBTQ populations, especially trans populations. On the smallest level, health practitioners need to educate themselves about trans needs, and be open to starting conversations with their patients about their medical needs. Practitioners should practice without influence from societal bias. Because it is impossible to erase all individual bias, all health practitioners should engage in personal bias training. Most of all, the medical industry needs to start valuing transgender voices and experiences, within all domains including research, education, training, practice, pharmacy, nursing, and insurance policy.

Change will not happen without large scale healthcare reform, collective efforts from communities, and individual efforts from healthcare providers.

Moving Forward

Using an oral history method to collect data about experiences of transgender people within healthcare has given depth and context to many quantitative research studies done previously. This qualitative method let transgender people tell their own stories and provide emphasis on the most impactful experiences in their lives. Through

this research, the participants were able to be represented as whole people, that have issues navigating healthcare, and explain how that affects the rest of their lives. The analysis of the interviews showed that healthcare is a complex system with many moving parts, and that transgender people encounter issues in almost all areas within the healthcare system. It also shows that healthcare is not insular, it has the ability to affect every part of a person’s wellbeing. While participants detailed many struggles, there is also a strong desire present to improve systems for each other and support members of the transgender community through these challenges.

Not only efforts from trans community will create change positive change for this population in healthcare. Both transgender people and healthcare professionals need to work together in order to create a safe environment for transgender people and all marginalized populations in healthcare. It is apparent within the data that many transgender people are well versed in doing this work. It is time for the healthcare field as a whole and professionals within it to join the efforts of transgender people in making healthcare safe and accessible for all gender diverse people.

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Footnotes

1. Elliot is a trans man and uses he/him pronouns.

2. Sean is a trans man and uses he/him pronouns.

3. Emmett is a trans man and uses he/him pronouns.

4. AJ is nonbinary and uses they/them or she/her pronouns.

5. Erica is a trans woman and uses she/her pronouns.

6. Sylvia is a trans woman and uses she/her pronouns.

7. Avery is nonbinary and uses they/them pronouns.

Appendix A

Shared Language

Transgender- people with a gender identity that differs from their sex assigned at birth

Trans- a shortened version of transgender, an umbrella term for any gender identity that differs from the one assigned at birth

Dysphoria- the experience of a transgender person who feels extreme discomfort with any or all aspects of being gendered in a certain way

Euphoria- the experience of a transgender person who feels joy with any or all aspects of being gendered in a certain way

HRT- an abbreviation for hormone replacement therapy, the medical process of taking cross sex hormones to change secondary sex characteristics

T- slang for testosterone, the hormone that trans men take to masculinize secondary sex characteristics

Top surgery- an umbrella term for gender affirming surgeries performed on the chest; this can include a double mastectomy, breast augmentation, etc.

Bottom surgery- an umbrella term for gender affirming surgeries performed on the genitals

Appendix B

Interview Guide

Biographical Questions:

State your age.

Where do you live?

What’s the most education you’ve completed?

How do you describe your sexual orientation?

How do you describe your gender identity?

How do you describe your race and ethnicity?

Intro Questions/ Identity Questions:

Who was the first trans person you saw in the media? How do you feel about them?

Who was the first trans character you saw on a television show or a movie?

Have you had experience with trans community?

How did you find out you were trans? When did you realize you were trans?

Is your gender identity/sexual orientation important to who you are?

When did you come out? Who are you out to?

What did coming out mean to you?

What’s the best and worst thing about being trans?

Health Questions:

What was healthcare like for you as a child?

How is it for you to navigate healthcare systems?

Medical Identity Questions:

Why are you pursuing medical transition?

What is transitioning like for you?

Who do you feel comfortable talking about health decisions with?

Final Questions:

How have you overcome hardships in your life?

What would you change about our healthcare systems?

Is there anything you want to add that I didn’t ask about?

Appendix C

Informed Consent

LGBTQ Studies Oral History Project

Informed consent and copyright permission for oral history interview

Participant’s name:

Mailing address:

Phone:

Email:

I voluntarily agree to be interviewed for oral history regarding my experiences at Kent

State University.

I understand that the following primary items may be created from my interview: a video recording and an edited transcript and summary, and that my interview may be distributed to the public for educational purposes, including formats such as print, public programming, and the Internet.

I further understand that the interviewer follows best practice professional and ethical guidelines set by the Oral History Association (US) and that the project has received an

IRB exemption from Kent State University as a qualified oral history project, and that professional and ethical guidelines will be followed in the curation and dissemination of my interview.

I understand that the intention of conducting this interview is to create an oral history interview that may become part of the Center for the Study of Gender and Sexuality

Digital Oral History project, including future inclusion in the Kent State University archives. I also understand that the Center for the Study of Gender and Sexuality may use my interview in educational, scholarly and research materials, projects and studies, which can include print, electronic, broadcast, internet and other modalities.

I agree to freely share my interview under the terms of a Creative Commons Attribution-

Non-Commercial License. This means that I retain the copyright, but that the public may freely copy, modify, and share these items for non-commercial purposes under the same terms, if they include the original source information. In return, I will receive a copy of interview transcript when that is completed, and that the Center for the Study of Gender and Sexuality will attempt to notify me of events or other developments related to this collection.

Participant’s signature______

Interviewer’s signature______

Date______

If you have any questions or require further information, please contact: Dr. Molly

Merryman (Research Director): 330-672-0315; [email protected]