Abstract
Background: Research has shown that transgender and nonbinary people experience health disparities. However, few studies have explored, in-depth, the health-related experiences, perceptions, needs, and priorities of transgender women of color living in the U.S. South, a region that poses unique challenges to achieving health for transgender people.
Aims: This study explored the social determinants of health, healthcare experiences, and health-related priorities of transgender women of color living in the U.S. South.
Methods: Using a community-based participatory research approach, we conducted iterative in-depth interviews with 15 African American/Black and Latinx transgender women in North Carolina in May-July 2019 for a total of 30 interviews. We analyzed interview data using constant comparison, an approach to grounded theory.
Results: Participants’ mean age was 34 (range 19–56) years. Twenty themes emerged that were categorized into three domains: (1) social determinants of health (family rejection; bullying, discrimination, and violence; isolation; policy barriers; mistrust in systems; employment obstacles; sex work; high cost of care; transportation barriers; church antagonism; and substance misuse), (2) healthcare experiences (emotional burden of healthcare interactions; name and gender misidentification; staff discomfort and insensitivity; sexual risk assumptions; and use of nonmedical or predatory providers), and (3) health-related priorities (understanding healthcare; respect at all levels of healthcare; inclusive gender-affirming care; and comprehensive resources).
Discussion: Transgender women of color living in the U.S. South face profound health barriers compounded throughout the life course and have unmet healthcare needs. Participants faced multilayered minority stressors: racial discrimination from society at large and within the LGTBQ community; gender identity discrimination within their regional context and racial/ethnic communities; and exclusion from existing health equity movements for transgender women of color, which often are found in and focus on larger urban communities. Health interventions mindful of this intersection are needed, including antidiscrimination policies and increasing gender-affirming healthcare access.
Keywords: African-American/Black, Health, Latinx, Transgender
Introduction
Compared to their cisgender counterparts, transgender persons, particularly of color, carry disproportionate burdens of adverse health outcomes, including depression; anxiety; substance use; suicide; sexually transmitted infections (STIs); and HIV (Bockting et al., 2013; Institute of Medicine, 2011; James et al., 2016; Nuttbrock et al., 2013; Reback & Fletcher, 2014; Reisner et al., 2016; Rhodes, Alonzo, et al., 2015; Sun et al., 2016). For example, it is estimated that 14% of transgender women in the United States (U.S.) are living with HIV, with a higher prevalence among African American/Black (44%), and Latinx (26%) transgender women (compared to 7% among White transgender women) (Becasen et al., 2019). HIV disparities are particularly pronounced in the South, which is the “new” and “latest” U.S. HIV epicenter (Centers for Disease Control and Prevention, 2019).
The health outcomes of transgender women of color are influenced by multiple social determinants (Solar & Irwin, 2010). Transgender persons experience high rates of poverty. Transgender persons of color are three times more likely than the overall U.S. population to be living in poverty (James et al., 2016). They also have high rates of physical and emotional abuse; and experience intense discrimination, harassment, and violence (Bradford et al., 2013; Gordon & Meyer, 2007; IOM, 2011; James et al., 2016; Nuttbrock et al., 2013; Reisner et al., 2016; Rhodes, Alonzo, et al., 2015).
Transgender women of color also face profound barriers accessing health care, further negatively affecting their health outcomes. These barriers include limited insurance coverage, high costs associated with care, and a lack of gender-affirming providers. In one study, one-third of participants reported at least one negative healthcare experience in the past year related to being transgender (e.g., verbal harassment or treatment refusal because of their gender identity), and nearly one-fourth avoided seeking care in the past year due to fear of mistreatment. Moreover, transgender persons of color in the U.S. South reported more healthcare access barriers and discrimination experiences compared to White transgender persons and those in other regions (James et al., 2016).
Few studies have explored the health-related experiences, perceptions, needs, and priorities of transgender women of color in the U.S. South (MacCarthy et al., 2015; Rhodes et al., 2020). The South tends to be more rural with under-resourced and fragmented service infrastructures (Rhodes, Mann, et al., 2015). Smaller southern communities do not have the political, religious, ideological, economic, or cultural diversity and support often found in urban settings (Horvath et al., 2014; IOM, 2011). Thus, there is a critical need to better understand the lived experiences of transgender persons in the U.S. South (Edmiston et al., 2016). We designed this study to qualitatively explore the health and well-being of transgender women of color within the unique context of the U.S. South.
Materials and methods
Community-based participatory research
This study was conducted by an ongoing community-based participatory research partnership. It was composed of community members, organization representatives, and academic researchers, who have worked together for more than 18 years (Rhodes et al., 2014, 2018). Partnership members, including transgender women of color, informed the study approach, data collection instruments, analysis, and interpretation. This partnership is committed to community-based participatory research because blending lived experiences with sound science has the potential to develop deeper understandings of phenomena, and interventions are more likely to be more relevant, and thus, successful (Rhodes et al., 2014, 2018; Suarez-Balcazar, 2020).
Iterative interviews
We conducted iterative individual in-depth interviews with transgender women of color living in North Carolina. Each participant was interviewed twice within two weeks. Iterative interviews facilitate rapport resulting in greater disclosure; improve accuracy by offering opportunities to follow-up on previously obtained information; and allow participants to recall information in greater detail (Lee, 1993; Rhodes et al., 2010).
Two standardized interview guides were developed in English and Spanish with careful consideration of wording, sequence, and content. We reserved sensitive topics for the second interview after establishing trust. Both guides are outlined in Table 1.
Table 1.
Interview Guide 1 |
General Questions |
What name would you like me to use with you? What gender pronouns do you use? If you are not from the U.S. South, what brought you here? |
Education |
What challenges have you faced getting an education as a Black, African-American, or Latinx transgender woman? What helped you overcome those educational challenges? |
Employment |
Tell me about any challenges you have faced getting a job and being employed as a Black, African-American, or Latinx transgender woman. Tell me about any challenges you have had related to: compensation, hours, type of work, meeting requirements, coworkers, getting to work, bathroom use, or staying employed or keeping a job. What could have helped you overcome these challenges? |
Housing and Food |
Can you describe your current living situation to me? What challenges have you faced, if any, finding a place to live as a Black, African-American, or Latinx transgender woman? How worried are you about having enough food each day? What about enough money for food? |
Transportation |
In terms of transportation, what barriers do you face getting to where you need to go? |
Social Support |
Tell me about the people who provide you with help when you need it. Who provides you with emotional support or a sense of security? Do you feel comfortable talking to them about your racial or ethnic identity and gender identity? What about your health? In your past relationships or in your current one, have your partner(s) used violence against you or have you ever felt unsafe around them? If you have one, tell me about what support you get from your place of worship or religious center. |
Interview Guide 2 |
Finances |
Tell me about when you have most recently worried about having enough money to pay your bills. |
Health |
What are your priorities when it comes to staying healthy? Tell me about how you usually pay for your health care, including any kind of insurance. Tell me where you usually go for different kinds of healthcare services. Primary care? Emergency care? Hormones? Mental Health? What healthcare needs or priorities do you have that you haven’t been able to get met? Describe how you usually get from where you live to different healthcare services. (e.g., your own car, a car ride with a friend or family, or bus) Where do other transgender women of color that you know usually go to get health care? When you get healthcare, what challenges have you faced as a Black, African-American, or Latinx transgender woman? Some transgender people are interested in having gender-affirming surgeries, procedures, or operations and some are not. Tell me about any challenges you have faced related to surgeries, procedures, or operations. When you have gotten health care, tell me about a time that you felt especially welcome based on your transgender identity. (e.g., signs, bathrooms, and treatment by staff) How can the healthcare system better meet your needs as a Black, African-American, or Latinx transgender woman? What experiences have you had related to STI or HIV testing? Tell me about any experience you have with HIV pre-exposure prophylaxis, which is called PrEP for short. What stops you or what barriers do you face getting screened for sexually transmitted infections on a regular basis? |
Discrimination |
Tell me about any experiences of discrimination you have had locally that were related to being a Black, African-American, or Latinx transgender woman. Tell me about a time you felt you were treated differently - in big or small ways - in the healthcare setting because you are a Black, African-American, or Latinx transgender woman, Tell me about other times you have witnessed or heard of discrimination taking place against another transgender woman of color. From what you have experienced, heard, or witnessed as a Black, African-American, or Latinx transgender woman, what kind of role does sex work have in making money or survival? Tell me about experiences you have had with law enforcement, including police, security guards, and ICE. From what you have experienced, heard, or witnessed, how do experiences of incarceration – being in jail or prison – affect transgender women of color? |
Participant recruitment
We enrolled 15 participants between May and July 2019. Inclusion criteria included being ≥18 years old, self-identifying as a transgender woman or reporting being assigned male sex at birth and self-identifying as female, self-identifying as a person of color or nonwhite, currently living in the U.S. South, and speaking English or Spanish. We recruited participants via purposive snowball sampling. Each participant completed informed consent in writing and received $50.00 (USD) for each interview. The Institutional Review Board approved study protocols.
Data collection
English interviews were conducted with 12 participants, and Spanish interviews were conducted with three participants, depending on participant preference. We digitally recorded them. Interviewers were trained in qualitative data collection and had experience collecting sensitive information from sexual and gender minority persons of color. The interviewers were a White cisgender gay man and a White cisgender heterosexual woman who was fluent in Spanish. Differences between an interviewer and interviewee (e.g., racial/ethnic and gender identity) can uncover insights often omitted as common knowledge when interviewer and interviewee share the same perspective. This method’s strength is that the interviewee offers further detail to a “naïve” observer (Seal et al., 2000; Thomas, 1992). A Latinx cisgender gay man, who was a native Spanish speaker, took notes during interviews. We intentionally reflected with transgender community members on our identities as primarily cisgender researchers and the social privilege ramifications of conducting research with these identities, and we recognize it is impossible to fully account for our own assumptions in our efforts to achieve ecological validity (Galupo, 2017). We collected demographics using an interviewer-administered assessment immediately before the first interview. Interviews ranged from 24 to 108 (mean = 55) minutes. After each interview, interviewers listened to the recording, documenting content and observations about potential themes. This prepared interviewers for subsequent interviews by identifying clarification points and areas for further probing.
Data analysis and interpretation
Interviews were professionally transcribed and translated from Spanish to English when necessary. We analyzed interviews using constant comparison, an approach to grounded theory (Charmaz, 2006). Data were inductively analyzed. Study team members read and reread transcripts, coded text, and came together to identify, revise, refine, reconcile, and interpret themes iteratively. Themes were categorized into domains. This process was designed to explore the breadth of experiences, not quantify participant experiences. We analyzed sample characteristics with descriptive statistics using Excel 2015.
Results
Participant characteristics
Participant means age was 34 (range = 19–56). Sixty-percent self-identified as African American/Black and 40% as Latinx. One-third had less than a high school diploma and 73% were employed either full- or part-time. Seven of the 15 participants reported not having health insurance. Select participant characteristics are in Table 2.
Table 2.
Characteristic | Mean ± Standard Deviation or n (%), as appropriate |
---|---|
Age in years | |
Mean | 33.9 ± 10.1 |
Median | 34 |
Range | 19–56 |
Race/Ethnicity | |
Black or African-American | 9 (60%) |
Hispanic or Latino/a/x | 6 (40%) |
Current gender identity | |
Transgender female/Transwoman/Male-to-Female (MTF) | 10 (66.6%) |
Female | 5 (33.3%) |
Education | |
High school diploma or equivalent, or higher | 10 (66.6%) |
Less than high school diploma or equivalent | 5 (33.3%) |
Country of origin | |
USA | 10 (66.6%) |
Mexico | 5 (33.3%) |
Current state of residence | |
North Carolina | 15 (100%) |
Language proficiency | |
Only Spanish | 2 (13.3%) |
English and Spanish equally | 4 (26.7%) |
More English than Spanish | 2 (13.3%) |
Only English | 6 (40%) |
English and Arabic | 1 (6.7%) |
Employment | |
Employed, 40 h worked last week | 2 (13.3%) |
Employed, more than 40 h worked last week | 6 (40%) |
Employed, fewer than 40 h worked last week | 3 (20%) |
Disabled and not working | 3 (20%) |
Unemployed | 1 (6.7%) |
Monthly income in USD ($) | |
None | 1 (6.7%) |
500–999 | 4 (26.7%) |
1,000–1,999 | 4 (26.7%) |
2,000–2,999 | 2 (13.3%) |
3,000 or more | 4 (26.7%) |
Health insurance | |
Yes | 8 (53.3%) |
No | 7 (46.7%) |
Perceived health status | |
Fair or poor | 2 (13.3%) |
Neither good nor bad | 2 (13.3%) |
Good, very good, or excellent | 11 (73.3%) |
Current relationship status | |
Not in a relationship | 6 (40%) |
In a relationship with one partner | 8 (53.3%) |
In a relationship with multiple partners | 1 (6.7%) |
Qualitative findings
We identified 20 themes. Eleven were categorized under the domain of social determinants of health, five under healthcare experiences, and four under health-related priorities. These themes with illustrative quotations are presented in Table 3.
Table 3.
Social determinants of health |
1. Family rejection |
“(My family) bullied me… The only one that never told me anything was my great-grandmother. She would defend me a little bit. But yeah, I mean, everyone.” (Latinx) “I knew I could walk the streets freely and dress how I wanted to dress and that if anybody messes with me, my family’s gonna get you, whereas these girls don’t have that family or that backbone or that structure. And so it’s like they’re alone, and they’re, you know, scared to walk anywhere, scared to go anywhere.” (African American/Black) |
2. Bullying, discrimination, and violence |
“[School was] very difficult. I got called names. I had zero friends from kindergarten through twelfth grade.” (African American/Black) “I was kicked out of school for fighting. I fought a lot in school. I felt like I had to protect myself… I ended up getting into a really bad fight. It’s also like when I was working at this store, and this lady paid this guy $20 to beat me up.” (African American/Black) “I think each transwoman’s experience is different. We grow up in a society where, a lot of us, our parents don’t take to their son acting effeminate, or their son expressing that they’re not a boy, they’re actually a girl. In the Black community it’s very shunned and a lot of the time you’re excommunicated or cast out. A lot of us already feel like pariahs in our own way.” (African American/Black) |
3. Isolation |
“I usually don’t open up to people, because I don’t like to be rejected and, so that I won’t have to experience rejection from anyone, I prefer to be alone.” (Latinx) “I was brought up by older queens… The purpose of your having a [gay] family is for when your biological family ditches you and kicks you to the curb because you are who you are, you have a family.” (African American/Black) |
4. Policy barriers |
“I think as a transwoman, when you get your name changed officially, there’s like a whole new life, whole new persona… For any transwoman, I think I can speak for a lot of them, once you get that name changed, officially and documented, it’s something that I can freely show you, my ID. I don’t have to be shy or explain myself.” (Latinx) “It’s hard for me, difficult to find a job… First of all because they ask me for documentation, and a valid Social Security, and later ‘cause I’m a transwoman. So it’s kind of more complicated twice.” (Latinx) |
5. Mistrust in systems |
“[Being transgender] played a big role in the way [the police] were treating me. They didn’t treat me nice. They were not nice at all. I hadn’t been in trouble with the law or nothing.” (African American/Black) |
6. Lack of safe and steady employment options |
“I had a job offer at a group home that was paying like $14.00 or $15.00 an hour and the only thing that I would have to do was I would have to go get a new ID made with male on it and I would have to dress as a male, and I’m not doing that.” (African American/Black) “It was a problem at my old job… They wrote me up because I went to the girl’s bathroom… and fired me.” (African American/Black) |
7. Sex work |
“It was hard for me to find a job. I did some sex work to be honest. How else am I going to pay my bills?” (Latinx) |
8. High cost of care |
“As far as going to the clinic and stuff, I haven’t been in so long because I don’t have any insurance. So I know if I go it will be expensive, so I haven’t really been.” (African American/Black) |
9. Transportation barriers |
“The bus driver knew me before my transition. Just, ‘Oh, so you’re a girl now? Wow. How does it feel to be a tranny?’… Guess what I was doing now? Taking another extra hour to get to, or walking more, so I don’t get on this bus. So, it was more – that really traumatized me for a long time because of what he did.” (Latinx) |
10. Antagonism by church |
“They pulled me in front of the church and they put this oil stuff on my forehead… Doesn’t this sound crazy? But I guess they call it ‘speaking in tongues.’ They were praying the gay or something out. I played along with them just so they would leave me alone… It’s so embarrassing.” (African American/Black) |
11. Substance misuse |
“I’ve cut back a lot now, thank God. But before, whenever I would get discriminated against or down, I would drink.” (African American/Black) |
Healthcare experiences |
12. Burden of emotional preparation to interact with health care |
“[Like that song,] Eye of the Tiger. You’re going to get looks, you’re going to get comments, so just toughen up, toughen up. You always have to be aware that something bad could happen.” (African American/Black) |
13. Name and gender misidentification |
“I was in emergency care. And they say you’re – they told me at the front desk, ‘You’re a man. We can’t treat you as a woman because you’re a man. Your identification says that you’re a man.’” (Latinx) |
14. Perceived staff discomfort and insensitivity |
“[A primary care doctor said], ‘Why do you do this, why do you look like this?’ And that’s his question. And that was – made me uncomfortable.” (African American/Black) |
15. Assumed to be at sexual risk |
“Every time I went, they also gave me a HIV test. Like, I know I’m not positive, so why every time I come in here? I could say I have a headache or toothache or something and the person will do a blood test and see if you have HIV or any kind of disease. I know I don’t have these things so why do you all keep… Is this like a routine thing for them?… They just do it. It’s like, okay, now I feel like that’s discrimination. I don’t feel like it’s because I’m Black, I feel like it’s because I’m trans.” (African American/Black) |
16. Non-medical and predatory sources of care |
“But the red flag for me is you can’t even ask for [the] name [of the person giving silicone injections]. I ask, ‘What's her name? What's her number?’ ‘Oh, I can’t tell you her name. Nobody knows her name.’ That, for me, was the red flag. How am I not going to ask for your name? You’re about to inject something in me, but I can’t even know your name? No, no, no.” (Latinx) |
Health-related priorities |
17. Understanding healthcare |
“I relied so much on Google, too much on Google. When I was first transitioning, I saw a lot of transwomen around me. They already had surgeries. I think that pressure when you’re so young and so vulnerable, you want to do it like this. So, I think that was my mistake.” (Latinx) |
18. Respect at all levels |
“I love [my provider] to death. He really, really helped me out a lot, versus everybody else before him [who] just brushed it off to the side and not seeing that I really needed help and stuff. He wrote a note telling people how to treat me and stuff like that. I’ll never forget him. He went above and beyond. And he listened to me. He was really concerned about my health. When I came to him, he was concerned. It was never nothing different. He never questioned who I was or anything like that.” (African American/Black) “Most importantly, [that doctors] care for us as the people we are, and that they respect us.” (Latinx) |
19. Inclusive gender-affirming care and services |
“It costs money to get laser hair removal… Honestly, as far as laser hair removal, I’ve spent – I could’ve bought a car, seriously. That was mainly going to different ones… until the last one I went to, who had a great machine that worked on Black skin. And if I would’ve known that, I could’ve saved probably about $5,000. ‘Cause I was going to one girl, her machine wasn’t even appropriate for Black skin.” (African American/Black) |
20. Comprehensive health resources |
“I just think they need to give the trans community their own clinic, that’s just what I believe, and that's just because I've experienced a trans clinic, and it was just awesome.” (African American/Black) “Because I don’t understand why they got it in New York and San Francisco and they don’t have it here, you know? That makes me feel like, well, North Carolina just don’t give a damn about the transgender girls, you know what I’m saying?” (African American/Black) |
Social determinants of health
Family rejection
Participants explained that family reactions to their gender identity profoundly influenced health and well-being. Many reported that their family was not supportive, particularly when they first “came out” as transgender or expressed a gender identity different from their birth-assigned sex. This lack of support contributed to social isolation and hindered coping with other challenges, while participants with a supportive family reported a buffering effect.
Bullying, discrimination, and violence
Participants reported victimization beginning with bullying and social exclusion in grade school because others perceived them as a sexual or gender minority. Some responded with self-isolation, whereas others fought in self-defense. Negative school experiences caused some participants to discontinue formal education before completing high school. However, several received support from counselors, teachers, or administrators that mitigated these experiences.
Discrimination continued into adulthood and was amplified by intersecting identities. A participant described feeling “doubly discriminated against” for being both transgender and African American/Black. Everyday hostility included whispered comments to verbal threats. Insensitive non-verbal communication was common, including staring (referred to by some participants as “the look”) and pointing. Participants also experienced intimate partner violence, citing power dynamics and imbalances, substance use, and partners’ internalized negativity about being in a relationship with a transgender person. Several participants had been in jail or prison and reported inconsistent housing policies for transgender persons and severe verbal harassment and physical assault while incarcerated.
Isolation
Participants described feeling socially isolated. Most reported they had few friends whom they could rely on. Many reported avoiding interactions and public spaces where they anticipated potential mistreatment, which also limited social connections. Some said they did not seek support from friends or family about challenges to avoid burdening them.
Conversely, participants who were part of community networks with other transgender women reported an increased sense of social support and resource access. Some reported seeking out explicitly welcoming spaces (e.g., signs indicating a “safe space” for LGBTQ [lesbian, gay, bisexual, transgender, and queer or questioning] persons). Several participants reported mentorship from older transgender women, who provided social support and valuable information about physical safety, romantic relationships, self-confidence, sexual health, and gender-affirming care.
Policy barriers
For participants, changing the name and gender marker on their government identification was essential for meeting daily needs. However, logistical barriers (e.g., extensive paperwork) and financial costs (e.g., lawyer fees) made identification changes difficult. Latinx immigrant participants reported documentation-related concerns, such as not having a social security number or driver’s license; these created additional barriers to employment and transportation.
Gendered public bathrooms created complicated and stressful experiences. Some participants avoided public bathrooms altogether because of harassment while using both women’s and men’s bathrooms, and felt that NC House Bill 2 (a law in place from 2016 to 2017 which preempted local antidiscrimination ordinances, requiring schools and public facilities to only allow people to use bathrooms corresponding to the sex identified on their birth certificate) led to increased mistreatment (Public Facilities Privacy & Security Act, 2016). Participants asserted that more gender-neutral bathrooms would increase safety, signaling that transgender persons are welcome.
Mistrust in systems
Participants reported reluctance to engage with public and private housing, law enforcement, health care, and employment systems. Mistrust spread through social networks; hearing about another transgender woman’s mistreatment in a given setting made them apprehensive. For example, participants expressed fear of law enforcement due to potential harassment, inappropriate questions, and arrest based on their own or others’ prior negative experiences. Latinx participants had additional concerns about being profiled as undocumented by police and about immigration enforcement.
Lack of safe and steady employment options
Difficulties in obtaining and maintaining employment were pervasive. Participants reported that employers often decided not to hire them if they knew they were transgender. Participants identified certain sectors with the more favorable treatment of transgender employees, including fast food, factory/warehouse work, construction, and rideshare services (Uber or Lyft). Participants reported harassment from managers, coworkers, and customers. Some were terminated when employers did not know they were transgender but later found out.
Sex work
Many participants reported engaging in sex work for financial survival. They expressed concerns about associated legal and health (e.g., violence and HIV/STIs) risks. A minority reported positive perceptions of sex work as an opportunity to feel valued as transgender women.
High cost of care
Participants reported cost as a major obstacle to healthcare access, particularly given limited access to employment options with adequate wages and health insurance. Many avoided necessary care, including primary and gender-affirming care, anticipating unaffordable costs. Participants with health insurance reported confusion and challenges regarding gender-affirming care coverage.
Transportation barriers
Participants reported discrimination from bus drivers and other passengers while using local public transportation. Most preferred to use personal vehicles, though not all could afford to. They instead relied on family, friends, and rideshare services.
Antagonism by church
Many participants, particularly those who identified as African American/Black, noted the church’s role as a center of community life. When religious leaders criticized sexual or gender minority identities, participants felt rejected by their community. Participants reported that family members cited religious beliefs as reasons to not accept their gender identity. Thus, many participants avoided religious settings. Others sought inclusive worship environments and reported participating in a faith community improved their well-being.
Substance misuse
Many participants reported past or current substance misuse, including alcohol and tobacco. Some cited “party culture” in their social networks. Others used substances to cope with isolation or discrimination.
Healthcare experiences
Burden of emotional preparation to interact with health care
Participants reported needing to mentally prepare for healthcare appointments. This included anticipating potential mistreatment, stares, insensitive comments, and misunderstanding by providers, staff, or other patients.
Name and gender misidentification
Universally, participants emphasized the importance of healthcare staff using their correct name and pronouns. Participants reported particular difficulty with front-desk staff misidentifying them, and frustration with having to correct staff at multiple points during care. A common concern was that a participant’s birth name would be spoken aloud in public waiting rooms, attracting negative attention.
Perceived staff discomfort and insensitivity
Participants perceived some healthcare staff as being uncomfortable caring for transgender persons and/or lacking the training to discuss gender identity in a culturally congruent manner. In addition, some participants experienced providers/staff who were insensitive or asked inappropriate questions about their gender identity or body; this discouraged them from seeking further health services. A welcoming healthcare environment was reported as having a long-lasting positive impact.
Assumed to be at sexual risk
Some participants felt that healthcare providers assumed that all transgender women engaged in high-risk sexual behaviors, and therefore they were screened for HIV/STIs unnecessarily often. For example, a participant sought care for a boil on her arm and was immediately tested for HIV/STIs, despite having been tested the week before; she expressed frustration that the provider was quick to recommend testing.
Nonmedical and predatory sources of care
Participants reported relying on the Internet for health information and obtaining treatments from sources outside healthcare settings. Those who could not get a medical prescription obtained hormone therapy through less reputable sources: friends, online, or purchasing from tiendas (Latinx grocers). Some participants obtained silicone injections from unregulated workers, often with limited information and in private homes, including at “pump parties.” Some gender-affirming surgical facilities were also perceived to be unscrupulous. For example, a participant traveled out-of-state to a surgical clinic where she received misleading pricing information, did not feel that the surgeon provided sound advice, and was unable to reach staff about postdischarge complications.
Health-related priorities
Understanding healthcare
Participants expressed a need for more information about nearby healthcare providers qualified to care for transgender patients (e.g., eligibility, how to make appointments, and costs), including guidance for those without health insurance. Latinx immigrant participants reported additional difficulty navigating the U.S. healthcare system and a need for Spanish-speaking providers or interpreters trained in working with transgender patients.
Respect at all levels
Participants emphasized that being treated more respectfully by healthcare staff at all levels, including frontline staff, nurses, schedulers, and billing staff, would improve healthcare. Some recalled positive experiences with providers who acted as advocates. Participants noted that physical signs welcoming LGBTQ persons sent comforting messages of inclusion in healthcare facilities.
Inclusive gender-affirming care and services
Participants reported a need for locally available, inclusive, and accessible gender-affirming care. Most participants prioritized hormone therapy. Some desired surgeries such as breast augmentation or vaginoplasty, whereas these were not desired by other participants; nearby options for gender-affirming surgery were extremely limited. In addition, other services such as speech therapy and laser hair removal were needed and sometimes difficult to access. For example, an African-American/Black participant reported challenges locating hair removal facilities equipped to work with darker complexions. Participants who had lived in other parts of the U.S. perceived the South as offering fewer health resources for transgender women. Many reported traveling to other states to access gender-affirming care.
Comprehensive health resources
Participants indicated unmet needs including primary care, mental health services, nutrition counseling, and HIV/STI care. Participants stated that consolidating gender-affirming and other health services in one location would best meet their needs.
Discussion
Our qualitative study further illuminates the barriers to health and wellbeing experienced by a marginalized population underrepresented in health research: transgender women of color in the U.S. South. Many of our findings are consistent with past research from other regions of the U.S.; what our approach provides is a comprehensive roadmap of the social determinants of health, experiences within healthcare, and unmet healthcare needs that can help explain why living within these intersecting identities results in compounded health disparities throughout the life course. Our participants experienced multiple minority stresses (Balsam et al., 2011), facing: racial discrimination from society at large and within the LGTBQ community; gender identity discrimination within their regional context and racial/ethnic communities; and exclusion from existing health equity movements for transgender women of color, which often are found in and focus on larger urban communities.
As has been documented and our findings substantiate, transgender women of color from a young age report rejection from family, churches, and school, compounding challenges as adults to obtain employment, transportation, and health care (James et al., 2016). Participants spoke about the uncertainty of not knowing whether discrimination they faced was based on their race/ethnicity, gender identity, or both. Our participants consistently described, especially as a youth, their family unit as either a powerful multiplier or buffer for discrimination based on race/ethnicity or transgender identity experienced outside the home. This is consistent with prior evidence that family and caregiver acceptance for sexual and gender minority (SGM) youth is associated with positive mental and physical health (Ryan et al., 2010).
Our participants, African-American/Black and Latinx, noted the considerable role of the Christian church in their particular North Carolina communities and the trauma they experienced if rejected for religious reasons; this is notable within the context of the South given that this region ranks the highest in the U.S. in terms of overall religiosity (Lipka & Wormald, 2016). As others have similarly found, isolation and emotional harm due to being transgender was a commonly reported experience within a religious context (Yarhouse & Carrs, 2012). Some participants eventually found more accepting religious communities, several turned to solitary faith practices, while others chose to leave religion behind altogether. This theme represents both a challenge and an opportunity: church-based health promotion interventions have a history of significant impact and could also support family acceptance (Campbell et al., 2007).
Participants emphasized that a supportive teacher, counselor, or older transgender woman acted as a powerful force to counteract discrimination based on transgender identity they experienced growing up; thus school-based interventions could reduce peer bullying while promoting family acceptance (Domínguez-Martínez & Robles, 2019).
Employment served as a particularly important nexus for health cited by our participants, due in part to increased access to health insurance and financial resources for food, housing, education, health maintenance, and healthcare. Challenges to maintaining employment led some participants to pursue survival sex work, which is often associated with exposure to STIs including HIV and violence, especially in the context of criminalization (Platt et al., 2018). The authors note that our interviews were conducted prior to the Supreme Court’s ruling in June 2020 that provided employment discrimination protections to transgender people. However, in NC, House Bill 142 still forbid cities and counties from creating public accommodation antidiscrimination policies until December 2020 (Reset of S.L. 2016-3, 2017).
The experiences of violence, victimization, harassment, and inconsistent treatment reported by our participants who had experienced incarceration are consistent with other research conducted within a jail in the U.S. South (McCauley et al., 2018). The criminal justice system represents another institution where further work is needed to improve health outcomes for transgender women of color.
We found that hostility and policy obstacles created further barriers to health. Many participants coped in harmful ways such as misusing substances, socially isolating, and avoiding interacting with systems. These findings are consistent with limited existing research which has modeled the association between discrimination based on gender identity and race/ethnicity and resulting substance use and mental health outcomes (Sutter & Perrin, 2016). Our participants honed in on government-issued identification gender/name change as particularly important demonstrating that in North Carolina, like other regions, legal name change represents an important area for intervention to increase socioeconomic stability, decrease discrimination, and increase healthcare access (Hill et al., 2018; Malta et al., 2020).
Consistent with previous research, our participants reported emotional, informational, and instrumental benefits when connected with community groups; therefore, efforts to increase support and encourage natural helping within social networks of transgender women of color may be an effective way to increase resource access and improve health (Rhodes, Alonzo, et al., 2015; Sherman et al., 2020; Sun et al., 2015).
Transportation was a thorny issue for participants and represents a potential area for future work. While research has demonstrated that active modes of transit like walking or biking are associated with better health outcomes (Avila-Palencia et al., 2018), the walkability scores of North Carolina towns where participants reside indicate car-dependent infrastructure (Walk Score, 2020). Furthermore, participants pointed to concerns about physical safety and/or police profiling on the street due to being both Latinx or Black/African-American and transgender. Harassment due to gender identity contributed to participants having an unfavorable view of public transportation, namely the bus. This was reflected in their preference for cars, although many could not afford their own and thus relied on the availability of friends or family or rideshare services. Overall, the lack of safe, health-promoting, and affordable transportation created health barriers.
Participants’ healthcare experiences were marked by providers’ and staff member’s use of incorrect names and pronouns, discomfort and insensitivity, and sexual risk assumptions. This created an emotional burden and led to the use of nonmedical, and sometimes predatory, care sources. These experiences are unfortunately not unique, as a growing number of studies also document the misunderstanding and unintentional harm that transgender women experience in healthcare settings (which should be a place for healing), therefore potentially leading them to avoid healthcare in the future (Grimstad et al., 2020; Hines et al., 2019; Meyer et al., 2020; Willis et al., 2020). Our research reflects the continuing need for reducing interpersonal stigma in medical settings, where power dynamics are especially salient and can serve as powerful forces to reduce or reinforce health disparities (Poteat et al., 2013). Thus, our findings provide a further rationale that any intervention designed to increase healthcare engagement among transgender women of color should strongly consider plans to train staff, students, and providers utilizing vetted curriculum (such as The Safe Zone Project [https://thesafezoneproject.com/]) that includes proper use of names/pronouns, as well as about up-to-date standards of care for LGBTQ + health (Bradford et al., 2013; James et al., 2016). For example, screenings for STIs should be provided using an accessible but appropriate and nonstereotypical approach, based not on gender or sexual identity but risky sexual behavior. Increased representation of transgender women of color among healthcare workers and in medical schools could also facilitate improved care (Cohen et al., 2002).
The top healthcare needs (mostly unmet) expressed by participants included guidance for those without health insurance, gender identity respect, gender-affirming care, primary healthcare, mental wellness, STI prevention/screening, and nutrition counseling – all within a manageable transit distance and preferably consolidated in one location. These priorities are generally consistent with those recognized by established U.S. institutions, including the Fenway Institute and the Center of Excellence for Transgender Health (Center of Excellence for Transgender Health, 2016; National LGBT Health Education Center, 2020). Our participants often highlighted the travel distances they overcame to meet their healthcare needs, including across state lines. For instance, one participant traveled by plane to Florida for surgeries; another participant took a bus to Virginia whenever she needed hormone therapy or STI screening. This may reflect both the paucity of knowledge about locally available healthcare, and the services that truly are not offered locally. As with larger urban regions, our participants described seeking out healthcare spaces that were explicitly welcoming to LGBTQ + people (Howard et al., 2019). Furthermore, participants consistently stated that there is a need for gender-affirming care and other wraparound services (e.g., mental health and HIV prevention/treatment) at low cost for those who are uninsured and in settings that are convenient, welcoming, and safe for transgender women of color.
Our findings illustrate the importance of understanding the experiences of transgender women of color in the U.S. South through the lens of intersectionality (Crenshaw, 2015), whereby identities of being transgender, African-American/Black or Latinx, and growing up in the U.S. South work together in complex ways to compound disparities (e.g., discrimination based on combined racial/ethnic, geographic, and gender identity; or practical barriers based on both gender identity and immigration documentation status). Optimizing one’s health is made incalculably more difficult when factoring in, at minimum, the triple-layered barriers that transgender women of color living in the U.S. South face throughout all aspects of their lives. An important, but at times underrecognized, aspect of LGBTQ + health research is the importance of regional social determinants of health which may or may not vary; our study in North Carolina helps to fill this gap.
Limitations and strengths
This study used a purposive sample of 15 participants who lived in North Carolina. Thus, findings may not be generalizable to all transgender women of color in the U.S. South. Our sample size could be deemed a limitation; however, we reached qualitative data saturation. Social desirability bias could have influenced participants’ responses, and we tried to mitigate this by ensuring confidentiality and creating a welcoming space. Further, using iterative in-depth interviews, our findings add to what little is known about this population, particularly in this region. Overall, our use of in-depth interviews with participants provides a more complete narrative understanding of the health of transgender women of color in the U.S. South. Each of our 20 themes could reasonably represent a focus for a future, more targeted research study and area for intervention, given the relative scarcity of work in this area.
Acknowledgments
Jonathan C. Bell, research project coordinator, assisted with note-taking in some interviews. The Wake Forest School of Medicine Institutional Review Board (IRB) approved study protocols. The IRB, part of the Human Research Protection Program, reviews all research involving humans.
Ethical approval and informed consent
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
Conflict of interest
The authors declare that they have no conflict of interest.
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