The Intersection of Stress,Health,and Health Care Opportunities for Appalachian Transgender and Nonbinary People: An Interpretative Phenomenological Analysis

Abstract

Transgender or nonbinary (TNB) individuals in the United States South experience higher rates of physical and mental health disparities when compared to their cisgender counterparts. Societal, interpersonal, and individual stigmas contribute to these disparities by increasing the levels of stress in the TNB population, which is a primary factor in higher morbidity and mortality. However, there is a paucity of research examining the impact of these stigmas on health through the lived experiences of TNB people living in Appalachia. An interpretive phenomenological analysis (IPA) research design was used to collect and analyze semi-structured interviews with TNB individuals living in Appalachia. Transcribed interviews were analyzed repeatedly by two analysts to identify emergent themes which focused on understanding an individual's lived experiences through interpretation. Ten participants from four Appalachian states within three Appalachian sub-regions participated in this study. Three shared healthcare themes were identified: experiences of stigma related to gender, the impact of stigma on personal wellbeing and perception of health, and the need for affirming TNB healthcare services. Respondents noted that chronic stress factors such as continual and compounding experiences of stigma and discrimination, stemming from religion or lack of affirming providers, negatively impacted their health. TNB individuals living in Appalachia experience chronic societal, interpersonal, and individual stressors that negatively impact their health. By addressing the stigmas, public health leaders, policymakers, and providers can improve access to health care and the health and quality of life of Appalachian TNB people.

Introduction

An individual may identify as transgender or nonbinary (TNB) if their gender identity does not align with their sex assigned at birth. In comparison, a cisgender individual is a person whose gender matches their sex-assigned at birth. ¹ Based on current estimates, approximately 1.4 million individuals live in the United States (U.S) who openly identify as TNB; however, experts believe that number could be higher with potentially 2.3 million people identifying as TNB. ² A majority of TNB people live in the U.S. South with approximately 500,000 TNB calling the South home. ²

Despite this significant population, Southern TNB people experience higher rates of physical and mental health disparities, especially compared to cisgender people, or those who identify as their sex assigned at birth.^3,4 These disparities are exacerbated by structural and systematic stigma, bias, and discrimination regarding their healthcare and lived experiences. The culmination of negative experiences results in higher rates of depression, anxiety, substance use, and suicidal ideation.^5–7 Similarly, Southern TNB people experience worse healthcare outcomes and experiences when compared to their lesbian, gay, and bisexual (LGB) counterparts. ³ In conjunction, these negative experiences may be even more heightened for TNB individuals living in the rural South.^3,4

TNB individuals experienced increased rates of poverty when compared to the general population. According to the 2015 United States Transgender Survey, TNB people are twice as likely to live in poverty when compared to the rest of the U.S. population; 29% of survey respondents reported living in poverty compared to the national rate of 14%. TNB people of color were even more likely to experience poverty. Based on survey responses, over 40% of Latino/a, American Indian, and multiracial respondents reported living in poverty, while 38% of Black respondents experienced poverty. Approximately half of TNB respondents diagnosed with HIV and living with disabilities were also living in poverty. ⁸

TNB people in the South experience significantly higher rates of physical and mental health disparities in comparison to their cisgender counterparts. In addition, these individuals experience a lack of access to affirming and quality care within their communities.^5–7 Southern TNB people report higher levels of poor physical health and are more likely to have one or more chronic conditions. ⁹ TNB communities in the South also experience significantly elevated levels of poor mental health, with high rates of depression, anxiety, and suicidal ideation among these individuals. ³ Furthermore, TNB people in the South experience high occurrences of interpersonal violence; one survey found that 47% of respondents reported experiencing violence from a stranger. ¹⁰ Rurality can also compound these disparities; TNB people living in the rural South may have heightened negative medical experiences and outcomes.^3,4

When assessing by regions within the U.S., Southern LGBTQ individuals report higher health disparities and less access to care when compared to individuals in other areas. Approximately 28% of Southern LGBTQ people report not being able to afford health care services—the highest in the nation. In comparison, 25% of LGBTQ people living in the Pacific region and 22% of those living in the Northeast reported not being able to afford healthcare services. Furthermore, LGBTQ Southerners report higher rates of new HIV infections than individuals living in other regions in the U.S. ¹¹

A TNB individual experiences prominent levels of stigma on the societal, interpersonal, and individual levels. Addressing stigma on these three levels is a crucial tool in providing gender-affirming care to the TNB community.^12,13 Societal stigma refers to social norms, laws, and policies that limit or block TNB people from accessing healthcare services. ¹² Interpersonal stigma refers to acts of stigma from individuals toward a TNB individual, including verbal harassment, physical violence, and sexual assault due to their TNB identity. ¹² Individual stigma refers to the internal negative thoughts, feelings, and beliefs that a TNB individual holds about themselves. ¹² Stigma causes negative health outcomes and experiences for TNB people as it works to induce stress within the individual. Stress increases disease morbidity and mortality, while also restricting healthcare access for this community. ¹⁴

The TNB community experiences more societal and interpersonal stigma that increases inequities in employment, health care, and housing when compared to cisgender individuals; these socio-determinates of health are often linked to health outcomes.^15,16 However, TNB-related stigma occurs in multiple spaces and times, complicating opportunities to address these disparities. While one form of discrimination or stigma may be eliminated, such as increasing provider ability, other forms of stigma, such as restrictive and targeted public policy, will continue to impede TNB's community access to care and further negative health outcomes. ¹²

In conjunction, experiences of stressors and discrimination are not singular experiences for TNB persons. These intersecting interpersonal and systemic stressors often result in chronic stress experiences for TNB individuals. Chronic and compounding stressors often result in worse mental health outcomes, increased substance use, and decreased use of supportive coping strategies.^17,18 In essence, these negative health outcomes and lack of supportive coping mechanisms are attributed to systems and structures not being responsive and affirming of the experiences and needs for TNB people.

The purpose of this study was to explore the lived experiences of TNB individuals living in Appalachia. This region is home to 26 million people and encompasses 13 states including Alabama, Georgia, Kentucky, Maryland, Mississippi, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, and Virginia, and all of West Virginia. ¹⁹ The region is divided into subregions: Northern, North Central, Central, South Central, and Southern. ²⁰ There is a paucity of research regarding the lived experience of TNB people living in Appalachia.

Methods

Design

An interpretative phenomenological analysis (IPA) research design was used to invite participants to extensively describe their lived experience with identifying as TNB in Appalachia. ²¹ IPA consists of three main theoretical approaches: (1) phenomenology, or the study of lived experience; (2) hermeneutics, of the theory of interpretation; and (3) ideography, or the study of the particular. ²¹ The research team consisted of the principal investigator and three co-investigators. The study was subject to a full board review and received human subjects’ approval—IRB approved protocol #1088743-2.

Sampling and Participants

Due to its qualitative approach, IPA privileges quality, not quantity, of interviews. ²¹ A homogeneous sample, cultivated from convenience sampling, was not intended for generalizability but for deep exploration of a shared phenomenon. ²¹ Community partners and businesses that serve the TNB population were asked to share information about our study with possible research participants. Researchers did not have contact with possible research participants without participants first contacting the researchers. Once participants connected with the researchers, the researchers verified that possible participants met the study's inclusion criteria in that they identified as a TNB, lived in the Appalachian area, and were 18 years or older. Participants were asked to share the research flyer or researcher's contact information to their personal networks if they felt appropriate. In addition, researchers shared the research flyer, by hard-copy and electronically with their personal and professional networks. Participants were provided a 15-dollar gift card.

Data Collection, Analysis, and Rigor

The interviews followed the semi-structured approach of IPA, which utilizes broad, open-ended questions, inviting participants to reflect at length upon their meaning-making process of a particular phenomenon (Appendix A). The interviews were recorded on a handheld, digital audio recording device and lasted 45–60 min. Participants were asked to complete a hard copy demographic survey.

Data were transcribed and analyzed according to the IPA framework, which involves reading the transcript multiple times, making initial notes, transforming the notes into emergent themes, and then looking for connections and relationships among themes.^21,22 The IPA method focuses on attempting to understand an individual's relationship to the world using interpretation. ²¹ The data analysis was led by the principal investigator and one co-investigator; each independently identified themes from the data and then engaged in comparative data-checking. Further, the IPA six-step process is immersive and integrates layers of data-checking. IPA is inherently concerned with deep exploration of a particular phenomenon, which leads to saturation and reflects the conceptual framework of the hermeneutic circle to extract deep understanding of the research participants’ lived experience of being TNB in Appalachia.^21,22 Once all the transcripts were reviewed and analyzed independently, the researchers came together to data-check shared patterns and themes.

Interpretive Findings

Ten participants from four different Appalachian states within three different Appalachian sub-regions were interviewed for this study. Tables 1 and 2 provide demographic information for the participants.

Table 1.

Participant demographic data.

Pseudonym	State	Appalachian region	Age	Race	Assigned birth sex	Gender identity
Brent	VA	South Central	24	W	Female	Trans Man
Charles	SC	Southern	25	W	Female	Trans Masculine
D	WV	North Central	46	W	Male	Female
Forest	VA	South Central	18	W	Female	Male
Marigold	VA	South Central	20	W	Male	Female
Maxwell	SC	Southern	29	B	Female	Trans Man/Gender Queer
Pat	NC	South Central	23	W	Female	Trans Man/Masculine
Ripley	TN	South Central	22	W	Female	Male
Sammy	SC	Southern	30	W	Female	Trans Masc/Genderqueer
Sidney	NC	South Central	18	W	Female	Agender

Table 2.

Participant selected personal characteristics.

Pseudonym	Highest level of educational attainment	Annual income	Relationship status
Brent	Bachelor's Degree	$22,000	Single
Charles	Associates Degree	$20,000	Single
D	Master's Degree	$40,000	Single/Divorced
Forest	Currently attending college	Full-time student	Single
Marigold	High School	$10,000	In a relationship
Maxwell	Bachelor's Degree	Less than $20,000	Single
Pat	Undergrad	—	Single
Ripley	Some college	$12,000	Married
Sammy	Associates Degree	$40,000	Married
Sidney	High School	Less than $5000	Single

Results

From the data analysis, three shared healthcare themes emerged which participants associated with their lived experience of being TNB in Appalachia: (1) experiences of stigma related to their gender; (2) the impact of stigma on their personal wellbeing and perceptions of health; and (3) the need for affirming TNB health care services. Data passages are presented verbatim with assigned pseudonyms, except where de-identified information and locations are used to maintain confidentiality.

Experiences of Stigma in Appalachia

Participants noted experiencing stigma and discrimination in their communities based on their gender. Most notably, individuals mentioned that the culture and policy landscape of the South played a significant role in their lived experiences. Furthermore, participants described how they were removed from social support networks such as their family or local community.

I was kicked out of my parents’ house. I dropped out of high school. There was no support or resources here. And I think that that's different in different parts of the country. (Marigold)

In terms of just social conservancy and just people should mind their own business kind of thing. I think that comes from this being a very rural area in terms of you’re pretty much on your own for everything. I think it's like a “don’t ask, don’t tell” kind of feeling where it's like okay, if we don’t acknowledge it then it's not actually there. (Ripley)

Religion was a commonly mentioned source of stigma for participants. Participants discussed how religion influences their family and peers’ behaviors towards the individual.

Because it's the Bible Belt, so a lot of my family is very religious. A lot of the people in my community are very religious and there's a lot of stigma in that regard in terms of transitioning and considering that unholy or whatever. There's definitely a black sheep feeling in some communities because of that. (Sidney)

Well, I think about conservative religious ideas and policies [that negatively impact TNB people] and that that is pretty deeply ingrained in the culture and community here at least. And I think it's similar in a lot of other places in Appalachia. (Sammy)

I had to shy away from religion because it was an all negative thing because my family were all conservative Christians, so that's kind of just, “You do anything, we’re gonna beat you with the Bible.” (Brent)

I grew up in a church of Christ. We heard from the pulpits all the time that queer people were pedophiles and they were perverts and they couldn’t be around children. I knew that I was queer. I didn’t have the words to say I’m masculine or that I’m a trans person, I didn’t have those words of course, but I knew that that was me. Internalized this, “I’m a pervert,” sort of thing. (Charles)

In some cases, participants discussed how they were “de-fellowshipped,” or removed from their church and community, based on their gender even if they had been a member for years.

I grew up in the religious background and everything like that…I had an instance where the elders called me in to ask if I was involved in lesbianism…They talked about it in the church that Sunday. Maxwell has not been to church in six months and we reached out to him. I think we are going to make a motion to de-fellowship all relationship from Maxwell and the whole church takes a vote. (Maxwell)

While participants consistently mentioned religion as a source of stigma and stress, it is important to mention that some participants mentioned spirituality and religion as a means of support to combat stigma and associated stressors. Furthermore, participants discussed how spiritual spaces could help them connect with family and friends.

It was a good fit for us. I’m still not super religious or super spiritual but I see it as more of a part of this community who holds the same ideas of loving one another and respecting each other and trying to help bring justice to people, so that's kind of what the Universalist are about. (Brent)

I’m really into music and my mom is the music master at church. So every once in a while we’ll play music together in church. (Forest)

We’ll do monthly meetings at a church. We just had a [holiday gathering], which is just a time for us to come together in fellowship with people who are of like mind and body and soul and all that stuff and just hang out. (Maxwell)

Stigma Impact on Wellbeing

Similarly, participants shared how their experiences with stigma impacted their health and wellbeing. Individuals described how this stigma negatively impacted their mental health—especially their own self-perceptions—and their willingness to continue receiving affirming care to improve their health outcomes.

But, [experiences of stigma related to gender] definitely made me feel very isolated, and alone, because not a lot of people kind of felt the same way around me. This made me feel even further depressed and alone. (Sammy)

Receiving care for my health needs and transitioning has completely halted right now because of living in Appalachia. I had to stop for my safety. (Marigold)

Some participants described their perceptions of how these stressors impact their TNB peers. D and Forest discussed seeing high occurrences of substance use and suicide within their communities due to external stressors and stigma.

I see those numbers (suicide rates) increase exponentially across the board for people I know—which is in line with the statistics that we see. Suicide rates are astronomical for trans folks. (D

…Queer people are more susceptible to addiction, more susceptible to those things. Not because of who we are…but like the stress of the world and the stressors of our life lead us to those things. (Forest)

Need for Gender-Affirming Health Care

When discussing health care, participants commonly mentioned the lack of appropriate health care available for TNB people in their community due to a lack of understanding and potential discrimination, indicating that participants were aware of the health care system within their community.

…a large part of why I didn’t want to go to the doctor or anything like that is because I knew I was Trans, but there's not a lot of doctors that deal with Transgender people. (Maxwell)

… but there's not a lot of doctors that deal with transgender people. (Brent)

…Half of health care providers kind of freak out about that and half of them don’t know what to do. So that is an issue that I have encountered in this region. (Pat)

Participants discussed personal healthcare experiences along with what healthcare for TNB people should entail. They described the critical importance, sometimes of life and death consequences, of providing affirming health care for TNB patients.

If I had not started testosterone, if I had not medically transitioned when I did, I don’t know if we would be having this conversation right now. (Charles)

The experience and possibility of going to an unprepared or harmful provider influenced participants’ decision to seek medical care:

why I was waiting ‘til I was 18 so that I wouldn’t have to be fighting both my parents and the doctors. I’d always been super worried that they would be like, “Oh, I don’t think you’re trans enough.” (Sidney)

…he wanted to do a hernia check which is what they do for typical cis males, but I didn’t know what he was talking about, and he was like, “Yeah, so drop your pants.” …it was just a very uncomfortable situation for me and the doctor because I didn’t have the parts that he was trying to check out. It's very important for doctors to know. (Brent)

Individuals offered insight into affirming and less stigmatizing practices. Respecting a person's gender identity was identified by the participants as a crucial piece when providing affirming care:

…they ask questions and they’re respectful and they all use the right gender pronouns and name and everything even before I had everything updated. (Brent)

I went to the doctor so they could take my stitches out from my fall, and she was like, “Do you want me to refer you so you can start transitioning?” I didn’t have to say anything, she just offered it…. (Sidney)

Discussion

Through data provided by the research participants, we analyzed the lived experiences of TNB in Appalachia-uncovering three shared experiences related to health care, including: (1) experiences of stigma related to their gender; (2) the impact of stigma on the health of the individual and community; and (3) the need for affirming TNB health care services. Although participants were not asked about their health or stigmatizing experiences specifically; it was noteworthy that each participant discussed both in critical aspects of the lived experiences as a TNB person in Appalachia. Our research provides a first-hand account of how prevalent stigma and stressors are intertwined with the health care needs among TNB participants who live in Appalachia.

Participants consistently noted that living in the Appalachian region influenced their experiences related to their gender. Experiences of stigma and discrimination—often stemming from religion—were noted among participants. Religion, which is prominent in Appalachia, can play a significant role in creating negative perceptions and behaviors for the TNB community. As an example, religion can be a barrier in providing adequate and affirming care to individuals who experience HIV; this highlights that this cultural norm may decrease the quality and availability of care to historically marginalized communities, such as TNB individuals. ²³ Combined, these factors may increase the stigma against the TNB community, which then can negatively impact the care delivered.

Furthermore, these experiences of stressors and stigma—stemming from religion and other cultural norms of Appalachia—may further increase the individual stigma felt by TNB people. Increased levels of individual and environmental stigma can lead to poor health outcomes for the TNB community. Previous research studies have shown that a mixture of these internal and systematic external stressors may result in an individual choosing not pursue services that affirm their identity. ²⁴ With such heightened experiences of these stressors for Appalachian TNB people, individuals may not pursue identity-affirming services due to fear and stigma, which may lead to even higher rates of negative health.

However, spirituality or religion can be a source of community and support for TNB people. As mentioned by participants, affirming and supportive spiritual places can help individuals feel more connected to their community and family. This increased level of connection may promote better health outcomes and reduce community and internalized stigma. Religious and spiritual spaces should work to be more inclusive and affirming of TNB people—especially in Appalachia where these organizations are more pronounced. However, it should be noted that religious organizations and institutions should take the responsibility of being more inclusive to rectify years of trauma and stigmatized teachings. These spaces could be used as a health education and resource-sharing space for TNB people in their Appalachian communities.

Furthermore, local and state-level policies in the South may contribute to this discomfort. There is an increase in anti-TNB policies being proposed and implemented in the South. For example, Texas and South Carolina introduced bills to ban providing affirming care to TNB youth and created insurance barriers to affirming care. These policies reinforce systematic discrimination and bias. ²⁵ Public health officials and other service providers could advocate for inclusive and affirming trainings for their peers and local communities to decrease the levels of stigma experienced by the TNB community. Decreased stigma would help to decrease stress, ultimately improving the health outcomes for TNB people. Furthermore, individuals in positions of power could advocate for affirming local, state, and federal policies that protect TNB individuals from discrimination and stigma—especially in the healthcare setting.

Affirming TNB Health Care

Participants consistently mentioned the need for and importance of practicing gender-affirming care, such as hormone therapy when working with TNB patients, with some discussing how critical it was to their survivability. These comments highlight that providers being able to provide affirming care to TNB individuals could make a difference in increasing survivability rates among the TNB population. ²⁶ Additionally, participants’ description of uncomfortable situations resulting from providers not being appropriately trained to provide affirming care to TNB patients highlighted concerns and considerations faced by this population. TNB individuals already experience a lower level of trust with the medical community as a result of these ill-informed clinical experiences. ²⁷ Providers who attempt to treat TNB patients without the appropriate knowledge and/or training are doing a disservice—and possible harm—to the community.^7,28

Furthermore, participant's language regarding access to healthcare options often carried a negative connotation. Multiple participants used language that communicated perceived contempt that healthcare providers held for TNB individuals, rather than approaching individuals from a holistic, person-centered approach in their delivery of care. For example, participants used the word “deal,” as in meaning having to deal with someone or an issue, when discussing the challenges of finding affirming healthcare providers, insinuating that they think their identity is something doctors perceived as a barrier to providing affirming care.

Those who live in Appalachia also feel hesitant about accessing health care services, if available, due to the fear of inadequately trained and prepared medical providers.^4,27 Providers and healthcare professionals should become knowledgeable of ethical and affirmative practices when working with a TNB individual. Participants mentioned actions providers could take to better provide care to TNB patients, including asking appropriate questions, using an individual's pronouns, and providing a supportive environment. It is imperative health care service organizations have an understanding that TNB healthcare is important to population health outcomes.

There will be occasions when TNB individuals need to seek specialized care; however, affirmative practices are also needed for everyday concerns from a general practitioner. By understanding best practices, healthcare providers will be able to engage with and treat those within the TNB community better. Furthermore, a concentrated effort to understand best practices when providing gender affirming care may help increase the comfortability of TNB patients. WPATH's standard of care provides evidence-based research on the assessment and treatment of children; mental health; hormone therapy; reproductive health; voice and communication therapy; surgery; post-operative care; lifelong preventative and primary care. ¹ In addition, educational curriculum in health care disciplines should integrate such models to prepare gender-affirming competent practitioners.

Limitations

Although qualitative data provide a rich detail on the health care experiences of some TNB people living in Appalachia, the sample consisted of one Black person, whose experiences were distinct from the rest of the sample. The inclusion of more racially diverse voices would provide a deeper context and understanding of the healthcare experience for all TNB people living in Appalachia. This inclusive context is essential for fully considering the intersectional issues of race, gender, and class within the TNB community—particularly when considering the alarming rates of violence targeted toward the Black and Latino/a/x TNB communities. Of note, most participants were assigned females at birth. Similarly, the sample consisted of multiple individuals under 30 and from 4 states within the Appalachian region. A range of ages, sex assigned at birth, and geographical areas would also provide additional context and understanding. These factors speak to the general limitations of the snowball/convenient sampling method. Our study relied on making connections with community organizations and individuals to recruit participants, which limits representative inferences.

Conclusion

Through exploring their lived experience, TNB individuals residing in Appalachia offered shared themes that drew attention to experiencing stigma based on their lived experience, the impact of stigma on their health and community, and the need for affirming health care. These shared themes are rooted in the societal, interpersonal, and individual stigmas TGBN individuals experience. These stigmas combined with significant health disparities, inadequate health care systems, and concerning health outcomes highlight the acute needs that are present for the already vulnerable and marginalized community of Appalachian TNB individuals. By addressing these stigmas that contribute to pronounced negative health outcomes and lack of affirming health care, the health and quality of life for Appalachian TNB may improve.