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Health Disparities & Minority Stress

Transgender women of color in the U.S. South: A qualitative study of social determinants of health and healthcare perspectives

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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.

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., Citation2013; Institute of Medicine, Citation2011; James et al., Citation2016; Nuttbrock et al., Citation2013; Reback & Fletcher, Citation2014; Reisner et al., Citation2016; Rhodes, Alonzo, et al., Citation2015; Sun et al., Citation2016). 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., Citation2019). HIV disparities are particularly pronounced in the South, which is the “new” and “latest” U.S. HIV epicenter (Centers for Disease Control and Prevention, Citation2019).

The health outcomes of transgender women of color are influenced by multiple social determinants (Solar & Irwin, Citation2010). 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., Citation2016). They also have high rates of physical and emotional abuse; and experience intense discrimination, harassment, and violence (Bradford et al., Citation2013; Gordon & Meyer, Citation2007; IOM, 2011; James et al., Citation2016; Nuttbrock et al., Citation2013; Reisner et al., Citation2016; Rhodes, Alonzo, et al., Citation2015).

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., Citation2016).

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., Citation2015; Rhodes et al., Citation2020). The South tends to be more rural with under-resourced and fragmented service infrastructures (Rhodes, Mann, et al., Citation2015). Smaller southern communities do not have the political, religious, ideological, economic, or cultural diversity and support often found in urban settings (Horvath et al., Citation2014; 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., Citation2016). 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., Citation2014, Citation2018). 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., Citation2014, Citation2018; Suarez-Balcazar, Citation2020).

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, Citation1993; Rhodes et al., Citation2010).

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. In-depth interview guides with domains and abbreviated sample items.

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., Citation2000; Thomas, Citation1992). 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, Citation2017). 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, Citation2006). 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. Selected self-reported participant demographic characteristics (N = 15).

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. Qualitative themes organized by domain with select quotations from in-depth interviews.

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, Citation2016). 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., Citation2011), 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., Citation2016). 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., Citation2010).

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, Citation2016). As others have similarly found, isolation and emotional harm due to being transgender was a commonly reported experience within a religious context (Yarhouse & Carrs, Citation2012). 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., Citation2007).

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, Citation2019).

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., Citation2018). 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, Citation2017).

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., Citation2018). 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, Citation2016). 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., Citation2018; Malta et al., Citation2020).

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., Citation2015; Sherman et al., Citation2020; Sun et al., Citation2015).

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., Citation2018), the walkability scores of North Carolina towns where participants reside indicate car-dependent infrastructure (Walk Score, Citation2020). 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., Citation2020; Hines et al., Citation2019; Meyer et al., Citation2020; Willis et al., Citation2020). 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., Citation2013). 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., Citation2013; James et al., Citation2016). 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., Citation2002).

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, Citation2016; National LGBT Health Education Center, Citation2020). 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., Citation2019). 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, Citation2015), 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.

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.

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.

Conflict of interest

The authors declare that they have no conflict of interest.

References