https://orcid.org/0000-0003-3998-2913
Abstract
Transgender and other gender diverse (TGD) youth of color experience stigma within healthcare. Gender affirmation can be a resilience resource; however, little is known about gender affirmation within healthcare.
This study explores TGD youth of color’s experiences of stigma and gender affirmation across the entire healthcare experience and their role on motivation to seek care.
In 2015, cross-sectional surveys and individual in-depth interviews were conducted among 187 TGD youth ages 16–24 living in 14 U.S. cities. Analyses followed a mixed-methods design whereby 33 participants were purposively selected for a qualitative phenomenological analysis based on quantitatively reported gender affirmation needs. Subsequent quantitative analyses examined how healthcare use differed by access to gender affirmation.
Participants qualitatively described experiencing stigma across multiple healthcare settings (e.g., primary care, emergency care, medical gender affirmation), including before (finding providers, scheduling), during (waiting rooms, provider interactions), and after (pharmacy) healthcare visits. Participants who quantitatively reported access to gender-affirming healthcare still described negative healthcare experiences, either because they accessed multiple healthcare services or because of prior negative experiences. Stigma and gender affirmation (both inside and outside of healthcare) influenced motivation to seek care, with variation depending on the type of care. Quantitative analyses confirmed these findings; access to gender affirmation differed for participants who delayed primary care vs. those who did not, but did not vary based on participants’ use of medical gender affirmation.
Findings highlight the importance of promoting gender-affirming healthcare environments to increase access to care for TGD youth of color.
Introduction
Transgender and other gender diverse (TGD) youth of color experience deeply-rooted societal racism and transgender-related stigma [1, 2], resulting in barriers to achieving good health and accessing healthcare [3–5]. Due to pervasive stigma, TGD populations experience health inequities across multiple health outcomes, including, for example, HIV, depression, suicide, substance use disorders, and intimate partner violence [6–10]. These inequities may be heightened due to a lack of access to appropriate healthcare, especially for TGD youth of color [8, 11–14]. Resilience may ameliorate the negative effects of stigma and help to improve healthcare experiences [15, 16]. However, little is known about TGD youth of color’s experiences of resilience within healthcare settings.
TGD Youth of Color’s Healthcare Needs
TGD youth of color have distinct healthcare needs. Adolescence and emerging adulthood (ages 16–24) is a unique developmental period [17, 18], during which many TGD youth begin to explore and understand their gender identity [19]. The development of gender during these ages may contribute to having different healthcare needs, including, for example, with primary care, medical gender affirmation services (e.g., hormone replacement treatment [HRT], surgery), and mental healthcare.
Access to healthcare is challenging for all TGD populations [8]; however, TGD youth of color often face additional barriers. As TGD youth of color transition into adolescent or adult care, it is important for TGD youth to find providers who are knowledgeable and respectful of their specific needs and experiences related to their gender identity, age, race, and ethnicity [11, 20, 21]. However, this can be challenging, especially since many TGD individuals report needing to teach their providers about their own healthcare needs [8]. This may be even more complicated for TGD youth of color, who also experience pervasive racism within medical systems, resulting in poorer provider communication and patient mistrust [22–24].
Some TGD youth of color may also seek medical gender affirmation. Though not all TGD youth seek medical gender affirmation, for those who do, this developmental period may be the first time they seek medical gender affirmation services. Access to medical gender affirmation is generally limited; according to the 2015 U.S. Trans Survey (USTS), conducted among a large national sample of TGD adults, 78% of respondents reported ever wanting HRT, but only 49% accessed HRT [8]. TGD youth of color may also encounter additional barriers. For example, TGD youth may need to rely on parents/guardians to help pay for care, provide transportation, and provide consent for accessing care. In addition, standards of care [25] that include age limits for accessing medical gender affirmation services limit TGD youth of color’s ability to access care [11].
TGD youth of color may also seek specialized services, such as HIV prevention or mental healthcare. TGD populations experience multiple health inequities, including with HIV, depression, suicide, and substance use disorders [6, 8, 26, 27]. TGD youth of color may face challenges when trying to access services related to these specific health outcomes, especially due to the compounding effects of multiple types of stigma, including, for example, transgender-related stigma, racism, ageism, HIV stigma, and mental health stigma [3, 28–30]. Although previous research has focused on these health inequities and identified an increase in healthcare needs, more research is needed to examine how healthcare experiences can be improved for TGD youth of color.
Theoretical Frameworks
To understand the healthcare experiences of TGD youth of color, and the ways in which both stigma and gender affirmation play a role in healthcare experiences, this study is informed by multiple theoretical frameworks, including an intersectionality framework [25, 26], Minority Stress Theory [27–30], and Fergus and Zimmerman’s conceptualization of resilience framework [6].
Intersectionality
An intersectionality framework is useful for understanding TGD youth of color’s experiences with stigma, resilience, and healthcare. Intersectionality frameworks recognize that individuals experience multiple aspects of identity (e.g., gender identity, race/ethnicity) and the combination of these identities create a fundamentally different experience of being marginalized or privileged [31, 32]. As such, healthcare use for TGD youth of color may be very different than for other TGD people. This paper applies an intersectionality framework in order to better understand the experiences that TGD youth of color have with health care.
Understanding Stigma and Healthcare Through Minority Stress Theory
For TGD youth of color, stigma often occurs as discrimination and victimization, and through policies and institutions that limit access to resources [8]. For example, the USTS found high reports of discrimination and victimization within education, employment, housing, the criminal justice system, and healthcare, with respondents of color experiencing more stigma [8]. Collectively, these forms of stigma can increase systemic vulnerability (i.e., social conditions that increase exposures to health risks), with TGD people of color experiencing high rates of unemployment, homelessness, poverty, and incarceration [8]. Systemic vulnerabilities, along with an overall lack of access to resources, and experiences of stigma, contribute to TGD youth being at a higher risk for disease burden, while also limiting access to healthcare [4, 33]. Furthermore, experiences of discrimination and victimization can also contribute to anticipated stigma and hypervigilance [34–36]. This is especially common within healthcare settings; for example, according to the USTS, nearly one-quarter of participants reported not using care due to fears of mistreatment in the past year [8].
Minority Stress Theory [35–38] is useful for conceptualizing stigma targeted at TGD youth of color. This theory conceptualizes stigma as occurring through distal (e.g., discrimination, victimization) and proximal (e.g., anticipated stigma, internalized stigma) minority stressors experienced above and beyond other everyday stressors [35–38]. Minority Stress Theory posits that minority stressors contribute to poorer health for TGD youth of color [35–38]. However, minority stressors may also contribute to challenges for healthcare utilization. Previous research examining transgender-related stigma within healthcare settings has found that provider discrimination (e.g., use of incorrect pronouns and names, refusal to provide care), anticipated stigma, and stigmatizing healthcare policies are barriers for accessing care [4, 20, 39, 40]. Extant literature is based on general TGD populations, with little research focusing on the specific needs of TGD youth of color.
Gender Affirmation as a Resilience Resource Within Healthcare
Minority Stress Theory also addresses how resilience (i.e., promotive factors such as pride and community connectedness) can improve the health of TGD populations [16, 37]. Resilience occurs across socio-ecological levels [41], and, using Fergus and Zimmerman’s conceptualization of resilience [6], resilience can be understood as being comprised of both resources (i.e., external factors that foster resilience within social and physical environments) and assets (i.e., internal factors that help individuals manage potential risks). Existing literature highlights the need to incorporate a focus on the macro-level of resilience (i.e., resilience resources) when understanding Minority Stress Theory, especially when considering the experiences of TGD populations and TGD populations of color [7, 36–40]. Often, studies focus on community connectedness and social support as a resilience resource, when understanding the role of resilience on minority stress [7, 37–40]; however, gender affirmation, and especially gender affirmation within healthcare, may also play an important role as a resilience resource. This focus on gender affirmation as a resilience resource recognizes that systems and institutions can function to promote gender affirmation (and therefore foster resilience), rather than having marginalized populations be burdened with the expectation of being resilient [41].
Gender affirmation refers to a social process where individuals receive support for their gender identity and expression [42]. Gender-affirming environments involve creating safe spaces for TGD youth of color [43]. For example, within healthcare, affirmation may include the consistent use of correct pronouns, while non-affirmation may be reflected in intake forms that only include male/female options [21, 43, 44]. According to the gender affirmation framework, healthcare settings that consider an individual’s need for and access to gender affirmation have the potential to alleviate health inequities among TGD youth of color [21, 43, 45]. Previous research has found that gender affirmation can moderate the relationship between stigma and poor health outcomes, including lack of access to healthcare [21, 42, 43, 45–47]. While much of the research exploring gender affirmation within healthcare has focused on HIV prevention and treatment [43, 45], one study conducted among Black TGD youth in the United States found that having gender affirmation needs met within healthcare settings was associated with less healthcare avoidance [47].
Despite emerging research on the importance of gender affirmation as a resilience resource within healthcare, studies have not examined these experiences among TGD youth of color or across the entire healthcare experience (i.e., before, during, and after a healthcare visit). Therefore, the goal of this study is to understand experiences of stigma and gender affirmation in TGD youth of color’s healthcare experiences, including the role of stigma and gender affirmation across the entire healthcare experience and the role these factors play with motivation to seek care.
Methods
Participants
Data are from the Affirming Voices for Action (AVA) project, a mixed-methods study conducted in 2015 using community-based participatory research principles. Recruitment and data collection methods are described by Jadwin-Cakmak and colleagues [48]. Purposive sampling was used to recruit 187 participants from 14 U.S. cities associated with the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN). ATN staff recruited TGD youth from their patient population and through collaborative community-based agencies. Eligible participants were ages 16–24, with a gender identity not the same as their sex assigned at birth, and were able to provide informed consent/assent. For this analysis, participants were excluded if they were non-Hispanic White (n = 25), knew that they were living with HIV (n = 59), or did not identify as trans-masculine (i.e., assigned female at birth and identify as masculine) or trans-feminine (i.e., assigned male at birth and identify as feminine) (n = 42), resulting in 79 eligible participants. Focusing on youth of color allows for an understanding of how gender identity, race/ethnicity, and age play a role in healthcare experiences. Furthermore, since living with HIV may change healthcare experiences, these analyses focus on individuals who are not living with HIV. Finally, the number of participants identifying as gender diverse (e.g., non-binary, genderqueer), was too small to include as a separate group after including additional eligibility criteria described in Phase I of the analysis; this population is unique and cannot be included with other participants [49].
Procedures
The mixed methods data were collected using a Transformative Concurrent Mixed Methods approach [50, 51]. A transformative approach is one that uses a theoretical lens as the predominant foundation for the design of the mixed methods study; this often incorporates values from a variety of theoretical perspectives (e.g., critical analysis, feminist perspectives) and is especially useful for understanding experiences of stigma among diverse and marginalized populations [51]. A concurrent approach is one in which quantitative and qualitative data are collected simultaneously, without any analysis of data occurring in between the collection of the different types of data [51].
All participants completed computer-assisted in-person surveys and individual-in-depth interviews (IDIs). The process for developing surveys and IDIs is described in more detail in the parent study’s protocol paper [48]. Surveys took approximately 45 min to complete and addressed a range of topics, including stigma, gender affirmation, and healthcare use.
Immediately upon completion of the survey, all participants completed an IDI. IDI interviewers were staff at the different ATN sites (e.g., social workers, case managers, outreach workers, nurses, study coordinators); interviewers were racially/ethnically diverse (with 9 White interviewers, 8 Black interviewers, and 3 Latinx interviewers) and the majority were cisgender women. All interviewers were trained on qualitative research methods, the study objective and theoretical constructs, and the interview guide. Semi-structured interview guides were developed through an iterative process that involved obtaining community feedback and revising the guide based on that feedback. The guides were grounded in phenomenological and constructive frameworks [52], and addressed the participants’ experiences of gender identity development, positive aspects of gender identity, gender affirmation (including social, legal, and medical gender affirmation) [14, 43, 44], barriers and facilitators to accessing health care, and HIV prevention [48]. When describing healthcare experiences, a visual aid of the socio-ecological model [41] was used to assist participants in reflecting on their experiences of barriers and facilitators across multiple socio-ecological levels (i.e., intrapersonal, interpersonal, institutional/community, socio-cultural/policy). IDIs lasted approximately 90 min and were recorded, transcribed verbatim, reviewed for accuracy, and de-identified. Participants were compensated for their time based on local ATN standards. Study activities were approved by the Institutional Review Boards at all 14 ATN sites and the University of Michigan.
Data Analysis
This analysis used an interactive mixed methods design [53] and elements of a sequential exploratory mixed methods design [51], with a primary focus on the qualitative data. Instead of analyzing the qualitative and quantitative data independently, an interactive mixed-methods approach is an iterative analytic design that allows for the qualitative and quantitative data to interact with each other through a sequential process where each phase of the analysis involves examining a different type of data [53].
Analysis involved three phases. First, to best address the research question, the sample was limited to participants who quantitatively reported that gender affirmation within healthcare was important to them (i.e., individuals with a high need for gender affirmation in healthcare). This was determined based on responses to two scales capturing experiences of gender affirmation within healthcare, measuring need for and access to gender affirmation (Table 1). The scales were built using the gender affirmation framework [42], and were developed in collaboration with the study’s youth advisory board (YAB), comprised of a diverse group of TGD youth (ages 19–26) in Detroit, Los Angeles, and Boston (with 3–4 youth per city); diversity was based on age, race, ethnicity, gender identity, and HIV status. Since these scales (along with other measures in the survey) were developed as part of this study, the quantitative survey was pilot tested among the YAB to ensure feasibility and acceptability.
Description of gender affirmation within healthcare scales
| Scale | Number of items | Response options | How it is calculated | Score range | Sample items | Cronbach’s alpha |
|---|---|---|---|---|---|---|
| Need for gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “It is important to me that my preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.70 |
| Access to gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “My preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.94 |
| Scale | Number of items | Response options | How it is calculated | Score range | Sample items | Cronbach’s alpha |
|---|---|---|---|---|---|---|
| Need for gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “It is important to me that my preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.70 |
| Access to gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “My preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.94 |
Description of gender affirmation within healthcare scales
| Scale | Number of items | Response options | How it is calculated | Score range | Sample items | Cronbach’s alpha |
|---|---|---|---|---|---|---|
| Need for gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “It is important to me that my preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.70 |
| Access to gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “My preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.94 |
| Scale | Number of items | Response options | How it is calculated | Score range | Sample items | Cronbach’s alpha |
|---|---|---|---|---|---|---|
| Need for gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “It is important to me that my preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.70 |
| Access to gender affirmation within health care | 8 | Agree (0) to Disagree (3) | Mean score | 0–3 | “My preferred name and gender pronouns are always used at the places where I receive healthcare, including in the waiting room” | 0.94 |
Participants were included in the analysis if, on average, they “agreed” or “strongly agreed” that gender affirmation within healthcare was important to them. Participants were stratified by gender identity and access to gender affirmation within healthcare (Table 2). There was a disproportionate number of trans-feminine participants reporting higher access to gender affirmation in healthcare (n = 27), compared to other groups (e.g., trans-feminine participants with low access to gender affirmation), so 10 participants were randomly selected from this group to ensure equal distribution across stratification categories. In total, 33 participants were included in the analysis. As shown in Table 3, the final sample was racially and ethnically diverse, from all U.S. regions, and had an average age of approximately 21 (SD = 2.5).
Participants stratified by gender identity and gender affirmation access in healthcare
| Gender identity | ||||
|---|---|---|---|---|
| Trans-feminine (n) | Trans-masculine (n) | Total (n) | ||
| Gender affirmation access | High accessa | 10 | 5 | 15 |
| Low accessb | 10 | 8 | 18 | |
| Total | 20 | 13 | 33 | |
| Gender identity | ||||
|---|---|---|---|---|
| Trans-feminine (n) | Trans-masculine (n) | Total (n) | ||
| Gender affirmation access | High accessa | 10 | 5 | 15 |
| Low accessb | 10 | 8 | 18 | |
| Total | 20 | 13 | 33 | |
aBased on the eight items from the Access to Gender Affirmation in Healthcare scale, high access refers to all participants who reported that, on average, they agree or strongly agree that they have access to gender affirmation within healthcare.
bBased on the eight items from the Access to Gender Affirmation in Healthcare scale, low access refers to all participants who reported that, on average, they disagree or strongly disagree that they have access to gender affirmation within healthcare.
Participants stratified by gender identity and gender affirmation access in healthcare
| Gender identity | ||||
|---|---|---|---|---|
| Trans-feminine (n) | Trans-masculine (n) | Total (n) | ||
| Gender affirmation access | High accessa | 10 | 5 | 15 |
| Low accessb | 10 | 8 | 18 | |
| Total | 20 | 13 | 33 | |
| Gender identity | ||||
|---|---|---|---|---|
| Trans-feminine (n) | Trans-masculine (n) | Total (n) | ||
| Gender affirmation access | High accessa | 10 | 5 | 15 |
| Low accessb | 10 | 8 | 18 | |
| Total | 20 | 13 | 33 | |
aBased on the eight items from the Access to Gender Affirmation in Healthcare scale, high access refers to all participants who reported that, on average, they agree or strongly agree that they have access to gender affirmation within healthcare.
bBased on the eight items from the Access to Gender Affirmation in Healthcare scale, low access refers to all participants who reported that, on average, they disagree or strongly disagree that they have access to gender affirmation within healthcare.
Sample demographics (n = 33)
| Sample distribution | |
|---|---|
| Gender identity, % (n) | |
| Trans-feminine | 60.61 (20) |
| Trans-masculine | 39.39 (13) |
| Race, % (n) | |
| Non-hispanic Black | 42.42 (14) |
| Asian and Pacific Islander | 12.12 (4) |
| Latinx/Hispanic | 33.33 (11) |
| Multiracial | 12.12 (4) |
| Age, mean (SD) | 20.52 (2.45) |
| U.S. Region, % (n) | |
| Northeast | 18.18 (6) |
| Mid-Atlantic | 15.15 (5) |
| Midwest | 12.12 (4) |
| West | 24.24 (8) |
| South | 30.30 (10) |
| Sample distribution | |
|---|---|
| Gender identity, % (n) | |
| Trans-feminine | 60.61 (20) |
| Trans-masculine | 39.39 (13) |
| Race, % (n) | |
| Non-hispanic Black | 42.42 (14) |
| Asian and Pacific Islander | 12.12 (4) |
| Latinx/Hispanic | 33.33 (11) |
| Multiracial | 12.12 (4) |
| Age, mean (SD) | 20.52 (2.45) |
| U.S. Region, % (n) | |
| Northeast | 18.18 (6) |
| Mid-Atlantic | 15.15 (5) |
| Midwest | 12.12 (4) |
| West | 24.24 (8) |
| South | 30.30 (10) |
Sample demographics (n = 33)
| Sample distribution | |
|---|---|
| Gender identity, % (n) | |
| Trans-feminine | 60.61 (20) |
| Trans-masculine | 39.39 (13) |
| Race, % (n) | |
| Non-hispanic Black | 42.42 (14) |
| Asian and Pacific Islander | 12.12 (4) |
| Latinx/Hispanic | 33.33 (11) |
| Multiracial | 12.12 (4) |
| Age, mean (SD) | 20.52 (2.45) |
| U.S. Region, % (n) | |
| Northeast | 18.18 (6) |
| Mid-Atlantic | 15.15 (5) |
| Midwest | 12.12 (4) |
| West | 24.24 (8) |
| South | 30.30 (10) |
| Sample distribution | |
|---|---|
| Gender identity, % (n) | |
| Trans-feminine | 60.61 (20) |
| Trans-masculine | 39.39 (13) |
| Race, % (n) | |
| Non-hispanic Black | 42.42 (14) |
| Asian and Pacific Islander | 12.12 (4) |
| Latinx/Hispanic | 33.33 (11) |
| Multiracial | 12.12 (4) |
| Age, mean (SD) | 20.52 (2.45) |
| U.S. Region, % (n) | |
| Northeast | 18.18 (6) |
| Mid-Atlantic | 15.15 (5) |
| Midwest | 12.12 (4) |
| West | 24.24 (8) |
| South | 30.30 (10) |
Next, qualitative analysis of the 33 transcripts was conducted using a phenomenological approach and social constructivism as the epistemological interpretive framework. The analysis also used team-based coding with a thematic analytical approach. Phenomenological approaches explore the ways in which a specific group of heterogeneous individuals share a common experience or phenomenon [52], and a thematic analytical approach identifies patterns within the data [54]. Using this approach, this analysis provides insight into the common healthcare experiences shared by TGD youth of color, while also highlighting differences and unique experiences.
Team-based coding was conducted with three analysts (who were all trained in qualitative analysis as well as the specific aims of this research study). After close readings of several transcripts, a preliminary codebook was developed, including deductive and inductive codes. Provisional definitions were assigned to each code and all three coders applied the provisional codebook to the same transcript. Disagreements in coding were discussed among analysts until consensus was reached, and the codebook was edited when necessary. This process was repeated on four transcripts (one from each stratification category) until all analysts were consistently applying the codebook to the same transcript. Once the final codebook was established, the codes were applied to all 33 transcripts; all transcripts were double-coded and disagreements in coding were resolved based on consensus or, when appropriate, by the first author. After codes were applied to all textual data, focused readings of coded text produced thick descriptions for the themes, identifying common concepts, patterns, and unique perspectives in the data. These descriptions were then grouped into larger themes which are represented here (presented in Fig. 1). Key quotes were selected to represent themes and describe participants’ healthcare experiences, using pseudonyms for the participants.
Conceptual model describing the healthcare experience.
Finally, quantitative analyses were used to triangulate data, which included examining areas of agreement and disagreement between qualitative and quantitative findings [53]. Quantitative analyses focused on the access to gender affirmation in healthcare scale used to purposively stratify the sample. Instead of examining the scale as composite indices, individual scale items were examined, allowing for nuanced exploration of different aspects of gender affirmation within healthcare.
Comparisons in experiences of gender affirmation were made across the use of primary care and medical gender affirmation services. Primary care was measured based on whether participants postponed or did not use primary care in the past six months. Analyses of medical gender affirmation were based on lifetime use of services and only included individuals who reported wanting or needing to use this type of care. To account for the small sample size and the non-normal distribution of the gender affirmation scores, non-parametric statistics (Mann-Whitney U tests) were used to determine differences in experiences of gender affirmation across healthcare settings.
Results
First, we present qualitative results describing the healthcare experience and motivation to seek care. Next, quantitative data are presented for the purpose of triangulating data and further elucidating qualitative results.
The Healthcare Experience
Participants described their experiences across multiple healthcare settings, including primary care, medical gender affirmation services, mental healthcare, gynecological services, and other types of specialized care (e.g., emergency care, dentists, and care for chronic diseases). Across these types of care, participants did not exclusively experience stigma or gender affirmation, but instead described both negative and positive experiences. Participants who quantitatively reported having access to gender-affirming healthcare still described negative healthcare experiences. In addition, individuals who currently have access to gender-affirming and respectful care often described previous negative healthcare experiences.
Participants described multiple aspects of the healthcare experience, including interactions with the healthcare system that occur before, during, and after a healthcare visit (Fig. 1). For each aspect of the healthcare experience, participants highlighted how stigma (both inside and outside of healthcare) and gender affirmation within healthcare influenced access to and use of care in addition to healthcare decisions and responses to care, which ultimately were described as shaping future healthcare experiences and motivation to seek care.
Before the Healthcare Visit
Finding a Provider
Finding a provider was generally described as challenging. Participants explained that geography (i.e., state, region) mattered when trying to find providers, with many participants describing accessing care in more than one state and/or U.S. region. Participants compared these experiences, and generally described having more difficulty finding gender-affirming providers in the South and Midwest.
Participants who had positive healthcare experiences often found these providers through referrals. In some cases, referrals came from other social services (e.g., homeless shelters) or from providers (e.g., pediatricians); however, most participants discussed speaking with other TGD people to find their provider. In fact, talking to other TGD people was described as essential for finding respectful providers, and enabled participants to learn whether a provider is gender-affirming. Providers referred through social networks were typically those serving TGD patients or working at LGBTQ-specific health centers. These centers were often identified as the best option for receiving care, and for some participants, the only possible option, with participants making statements such as, “If I didn’t have that, then I do not think that I would wanna go to a doctor if I was feeling sick” (Brianna, trans-feminine, low access, age 19, Latinx). However, multiple participants also stated that these better options were often full and had long waiting lists.
Making a Healthcare Appointment
Only a few participants discussed the experience of setting up an appointment and when these experiences were discussed, they were typically negative. Making calls for scheduling an appointment or managing health insurance was described as requiring a lot of emotional energy and taking a toll on mental health, due to the experiences of stigma and mis-gendering that would occur throughout this process. Multiple participants explained that these negative experiences would contribute to avoiding primary care or even avoiding treatment when sick:
Would I rather go to a doctor when I’m sick or I can probably just wait it out… I don’t want to have to call someone to make an appointment… My name on my insurance didn’t match my legal name… I don’t want to have to explain my insurance and why my names were different, and are they going to call me by my correct name or are they going to call me by my name on my insurance… all the fears accumulate… it’s just easier if I just don’t (Charlie, trans-masculine, high access, age 21, non-Hispanic Black).
This highlights how even before the healthcare visit, concerns about experiencing stigma and being mis-gendered contribute to care avoidance and motivations to seek (or not seek) care.
During the Healthcare Visit
Waiting Room Experiences
Waiting room experiences were generally described as challenging. Participants described being mis-gendered and needing to explain their gender identity, especially when presenting a government-issued ID or health insurance card. Participants encountered problems in waiting rooms when there were inconsistencies between documents, electronic health records, and their gender presentation. Participants stated that having to “explain” their gender identity to administrative staff meant having to “come out” during every healthcare visit. This experience was perceived as uncomfortable and unsafe because it was unclear how administrative staff would react. Participants were also concerned about being outed to others in the waiting room; being outed was described as uncomfortable, awkward, stressful, and unsafe because it attracts unwanted attention with “People staring you up and down, like are you the right person?” (Daniel, trans-masculine, low access, age 24, Latinx). Participants also described how safety concerns can influence motivation to seek care:
I am really afraid… people have clocked me [identified me as transgender], and it is scary, but if I am going through the day and I am not stopping, and I am not doing anything, nothing to call attention to me, I am not seen. So, those instances where I have to show my ID or show a legal documentation of who I am, it’s hard and it is scary and every time I have to think of what is going to happen… do I want to spend the energy today or any other day to do it? (Laura, Trans-feminine, low access, age 22, Latinx).
In some cases, discrepancies between identity documents, insurance cards, and gender presentation resulted in not getting care, even when participants were sick. Some participants described being refused care because of these discrepancies, while others described being disrespected and choosing to leave the healthcare setting.
Provider interactions
Provider interactions were described as both negative and positive. Typically, participants differentiated between a negative and positive interaction based on if they were treated with respect, how much knowledge the provider had about TGD experiences and healthcare needs, and the level of support that was provided when trying to navigate the healthcare system.
Respect
Respect from providers was described as necessary for a positive healthcare experience. In a few cases, using correct names and pronouns was enough to identify a healthcare experience as respectful and positive, but mostly, participants identified multiple ways in which communication with the provider demonstrated respect or disrespect. For example, signs of respect and disrespect were identified as both verbal and non-verbal. Disrespect was described as saying inappropriate things, but multiple participants referred to providers using a tone or a look representing a provider’s judgement and confusion. These acts of disrespect generally involved displays of provider discomfort, in a way that was de-humanizing, with participants often using words like “creature,” “alien,” and “specimen” to describe how they were treated. These experiences of being disrespected and de-humanized can be a deterrent from getting care:
I remember there was an incident where I got mugged and I had to go to the ER where the doctors were kind of looking at me weird like, “how do we deal with this person?”… No one was outwardly negative to me, but I could see in their faces this, “what are you?”… I could see this judgement and confusion in their eyes… I just got mugged an hour ago. Someone just shoved their knee in my face, can you not worry about my gender right now? Can you just worry about making sure I’m not fucking dying? (Brianna, trans-feminine, low access, age 19, Latinx).
According to multiple participants, when providers are so focused on their patient’s gender identity and are unable to be comfortable around them, it becomes difficult for the focus to be on the health issue that brought the patient into the healthcare setting in the first place.
When participants were asked to offer recommendations for healthcare providers, some participants simply explained that they wanted to be treated with respect, like a human, and that they wanted providers who are non-judgmental and do not look at them like they are “a freak.” One participant (Sam, trans-masculine, low access, age 21, API) expanded on this and stated that he feels that it is the responsibility of a provider to be an advocate for their patient, to make sure that they are not disrespected at any point within the healthcare environment.
When participants did feel as though they were respected by their provider, they described feeling good about their healthcare experience:
They treated me with the correct respect… called me by my preferred pronouns. They were very nice about it… I was dating a trans guy… and they were very respectful of his pronouns, and his name… that was something that really helped me in terms of my healthcare journeys. It gave me a lot of confidence in speaking to my healthcare providers about me being trans (Michael, trans-masculine, low access, age 20, Latinx).
Having positive and respectful experiences in care helped participants to not only perceive that experience as beneficial, but it also gave them the confidence to navigate the healthcare system and to be open about their gender identity with other healthcare providers.
Provider knowledge
Providers and healthcare staff who lacked knowledge were described as treating their patients poorly. For example, Daniel (trans-masculine, low access, age 24, Latinx) explained how a lack of staff and provider knowledge contributed to a “really bad” healthcare experience, where the provider was “super nervous” and “super uncomfortable,” and was switching between multiple pronouns:
[The provider] starts saying, “I”m sorry… I don’t know much about this and I just never worked with anybody that looks like you’…It was unprofessional… it’s like I was a creature in her room…not friendly… not respectful… unknowledgeable… clearly there is not enough sensitivity or trainings that you’ve [the health center] done with your physicians.
A lack of knowledge also resulted in providers asking inappropriate and offensive questions. For example, one participant described an ER doctor who asked to see her genitals when her healthcare visit was unrelated to that. Participants also discussed needing to teach their provider about their gender identity. These experiences were upsetting, but they were also identified as a barrier for accessing care; participants explained that when a healthcare visit is spent answering inappropriate questions and teaching providers about gender identity, there is no time to address their needs: “Are we actually getting at the fact that I came here for a specific reason?” (Charlie, trans-masculine, high access, age 21, non-Hispanic Black).
Though participants recognized that how they were being treated was inappropriate and problematic, some highlighted that providers were not purposely being malicious. Instead, they attributed these experiences to a lack of provider training. The need for provider training was a salient theme across participants. Participants explained that provider training should be about more than learning what gender identity is and the importance of pronouns, but should also include how social and political environments play a role in healthcare experiences. Participants highlighted the importance of these trainings and stated that it is “really not that hard” to learn about these experiences and be respectful towards TGD people.
Participants described how positive healthcare experiences involved trust and open communication with providers. This type of patient-provider relationship was often influenced by participants’ perceptions that their provider had knowledge about their experiences and care. When participants had providers who understood their health needs and who were “sensitive” to TGD health issues, they explained that they felt more “comfortable,” and described having more trust in their provider: “[My primary care provider] knows what she’s talking about, and she makes me feel like, OK, I’m in good hands” (Andrea, trans-feminine, low access, age 21, Latinx). Participants described how they were more likely to continue seeing providers who had more knowledge about their experiences. Additionally, some also explained that having sensitive providers who had more knowledge about TGD experiences more broadly encouraged them to seek healthcare and navigate healthcare settings.
Healthcare system navigation
Often, participants discussed how their providers and healthcare settings assisted them in accessing medical gender affirmation services; this was discussed not only for providers who directly provided those services, but also when describing other types of physicians (e.g., primary care providers, gynecologists) who assisted in navigating the healthcare system. One way that providers assisted in attaining medical gender affirmation services (when desired) was to provide appropriate referrals. For example, one participant (Dominique, trans-feminine, high access, age 22, non-Hispanic Black) described a supportive provider who helped her access hormones, despite not being able to prescribe them:
She’s just there for me. She was on it before I was even on it. Like when I first mentioned it [my gender identity] to her, she was listing down things I needed…so I was okay… she’s not able to prescribe hormones. I had to go to a doctor that specializes in hormone therapy replacement, but they built a care team around me so that way I’m completely covered.
This participant’s experience highlights that even if a provider is unable to address a healthcare need, they can still provide support in navigating the process.
Participants also described positive experiences when their providers helped them to navigate insurance companies. Dealing with insurance, especially when trying to access medical gender affirmation services, was highlighted as a huge barrier for accessing care. When providers offered support in this process, participants felt more positive about their care experience and had a better understanding of how to access care. This type of support included having providers offer education on how to navigate insurance companies, and also included having providers advocate on behalf of their patients to ensure coverage.
After the Healthcare Visit
Pharmacies were often described as a healthcare barrier, especially when participants were trying to access hormones. Some participants stated that pharmacists were unsure of how to “deal with” them because of their gender identity. Similar to experiences in waiting rooms, participants encountered challenges with mis-gendering and incongruences between the participant’s gender and identity documents, health insurance cards, and/or electronic information systems; these challenges sometimes resulted in pharmacies refusing to provide medications, especially hormones. One participant (Dominique, trans-feminine, high access, age 22, non-Hispanic Black) explained how she advocated for herself when her pharmacy refused to fill her hormone prescription: “I called [the pharmacist’s] manager, I called my doctor’s office, and I called the corporate [pharmacy] number, and I complained. I raised hell and the doctor came into the store and actually met with the people.”
In contrast, some participants described having positive pharmacy experiences. During these encounters, participants described being treated with respect, which included having pharmacists use their correct names and pronouns, assist with reminders to pick up medication and hormones, and help with navigating health insurance. Pharmacies that challenged insurance companies and advocated for their clients were perceived as especially supportive.
Motivation to Seek Care
Motivation to seek care varied across types of care. Generally, participants stated that having positive experiences and establishing regular care providers enabled them to have continuous access to care. On the other hand, negative care experiences and the expectation of negative care experiences contributed to healthcare avoidance.
Though negative healthcare experiences occurred across all types of care, participants stated that these experiences made them avoid primary care more than any other type of care, with participants highlighting that getting primary care was not always worth the effort:
Even when I want a flu shot, I can’t get that because I am afraid of getting violence against me in the form of mis-gendering, misleading me and invalidating my experience… to even know that might be a possibility, I’d rather not, I will just go through three weeks of the flu (Laura, Trans-feminine, low access, age 22, Latinx).
Conversely, many participants described trying to access medical gender affirmation services (including attaining a mental health referral, use of hormones, and surgery [top and/or bottom]), despite any concerns about encountering stigma in these healthcare environments. Instead, motivation to seek medical gender affirmation services was influenced by factors occurring outside of healthcare settings. For example, participants expressed delaying medical gender affirmation because of concerns about family acceptance; participants were especially hesitant to access this care if they relied on families for their housing or health insurance, were not out to their families, and/or believed their parents would reject them. Participants also expressed delaying medical gender affirmation if they were working or attending school in less accepting environments (e.g., the military, religious all-girls school). Lack of insurance coverage was also described as a huge barrier to accessing medical gender affirmation, and, in some cases, deterred participants from even trying to find a provider.
For trans-masculine participants, some recognized the importance of gynecological services, while others were unsure about their gynecological care needs. In general, participants recognized that trans-masculine people are often hesitant about visiting gynecologists. Gynecology offices were described as female spaces. This creates barriers for accessing these services, even when providers are gender-affirming:
I know I should… but I’m never going to go to a freaking gynecologist… Walking into what’s typically a women’s only center as a guy, is incredibly uncomfortable… But even if they’re great, even they’re really nice and respect your pronouns… there’s no way to get around how awkward that is (Sam, trans-masculine, low access, age 21, API)
Role of Identity
Trans-feminine and trans-masculine participants had similarly diverse and nuanced healthcare experiences that included both stigmatizing and gender-affirming experiences. However, participants discussed accessing different types of care. Only trans-masculine participants discussed experiences with gynecologists. Trans-feminine participants discussed having more experiences with HIV prevention services, and, in some cases, these services linked them to other healthcare settings. A few trans-feminine participants described being in support groups; these groups focused on HIV, but they provided additional mental health and social support, and helped participants to get linked with healthcare-related resources.
Race and ethnicity were not included in the semi-structured interview guide, so interviewers did not probe on race/ethnicity. However, some participants still discussed how their race/ethnicity shaped their healthcare. Race/ethnicity was sometimes identified as the primary reason for being denied care; these experiences were often described as geographically specific, with participants describing more enacted and anticipated racist stigma occurring in the South and Midwest.
Triangulating the Data
Quantitative analyses mostly confirmed qualitative findings. Despite participants describing many challenging healthcare experiences, the median score for six of the eight items on the access to gender affirmation scale indicated that participants had access to gender affirmation (Table 4). When comparing participants who used medical gender affirmation services with those who did not, there were no differences in experiences of gender affirmation within healthcare. However, when comparing participants across use of primary care, there were differences in experiences of gender affirmation. Participants who avoided primary care reported having less gender affirmation related to three scale items: Having providers use appropriate words for body parts (p = .047), having access to gender-neutral bathrooms (p = .003), and having a provider who can offer referrals (p = .046). This confirms qualitative findings, which highlight that positive and negative experiences during the healthcare visit have an influence on the motivation to seek primary care, while other factors outside of the healthcare experience influence the motivation to seek medical gender affirmation services.
Mann–Whitney U tests examining differences in access to gender affirmation across types of care (n = 33)
| Delayed/did not use primary care in the past 6 months | Ever used medical gender affirmation servicesb | |||||||
|---|---|---|---|---|---|---|---|---|
| No (n = 23) | Yes (n = 10) | U | p-value | No (n = 9) | Yes (n = 24) | U | p-value | |
| Access to gender affirmation, median (IQR)a | ||||||||
| Correct pronouns are used in healthcare setting | 3.0 (3.0,4.0) | 2.0 (1.0,3.0) | −197.5 | .052 | 3.0 (2.0,4.0) | 3.0 (2.0,4.0) | 81.5 | .540 |
| Provider apologizes if they make a mistake related to name or gender pronouns | 3.0 (3.0,4.0) | 3.0 (2.0,3.0) | −178.0 | .241 | 3.0 (2.0,4.0) | 3.0 (3.0,4.0) | 79.5 | .589 |
| Intake forms are inclusive | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −193.5 | .078 | 3.0 (3.0,4.0) | 2.0 (1.5,3.0) | 79.5 | .544 |
| Provider asks about appropriate words for body parts | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −199.0 | .047 | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | 79.5 | .404 |
| Gender neutral bathroom is available | 3.0 (2.0,4.0) | 1.5 (1.0,2.0) | −222.0 | .003 | 3.0 (3.0,4.0) | 2.5 (1.0,3.0) | 79.5 | .141 |
| Provider is knowledge about TGD populations | 3.0 (3.0,4.0) | 2.5 (2.0,3.0) | −190.0 | .099 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 53.0 | .551 |
| Provider can offer resources and referrals | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | −199.0 | .046 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 43.5 | .323 |
| Provider is knowledgeable about insurance needs of TGD people | 3.0 (2.0,4.0) | 2.0 (2.0,3.0) | −190.0 | .102 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 38.5 | .230 |
| Delayed/did not use primary care in the past 6 months | Ever used medical gender affirmation servicesb | |||||||
|---|---|---|---|---|---|---|---|---|
| No (n = 23) | Yes (n = 10) | U | p-value | No (n = 9) | Yes (n = 24) | U | p-value | |
| Access to gender affirmation, median (IQR)a | ||||||||
| Correct pronouns are used in healthcare setting | 3.0 (3.0,4.0) | 2.0 (1.0,3.0) | −197.5 | .052 | 3.0 (2.0,4.0) | 3.0 (2.0,4.0) | 81.5 | .540 |
| Provider apologizes if they make a mistake related to name or gender pronouns | 3.0 (3.0,4.0) | 3.0 (2.0,3.0) | −178.0 | .241 | 3.0 (2.0,4.0) | 3.0 (3.0,4.0) | 79.5 | .589 |
| Intake forms are inclusive | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −193.5 | .078 | 3.0 (3.0,4.0) | 2.0 (1.5,3.0) | 79.5 | .544 |
| Provider asks about appropriate words for body parts | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −199.0 | .047 | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | 79.5 | .404 |
| Gender neutral bathroom is available | 3.0 (2.0,4.0) | 1.5 (1.0,2.0) | −222.0 | .003 | 3.0 (3.0,4.0) | 2.5 (1.0,3.0) | 79.5 | .141 |
| Provider is knowledge about TGD populations | 3.0 (3.0,4.0) | 2.5 (2.0,3.0) | −190.0 | .099 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 53.0 | .551 |
| Provider can offer resources and referrals | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | −199.0 | .046 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 43.5 | .323 |
| Provider is knowledgeable about insurance needs of TGD people | 3.0 (2.0,4.0) | 2.0 (2.0,3.0) | −190.0 | .102 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 38.5 | .230 |
aThe access to gender affirmation scale is on a 4-point scale ranging from 1 to 4, with 1 indicating strongly disagree and 4 indicating strongly agree to the gender affirmation in health care scale items.
bAll participants quantitatively reported having plans to use medical gender affirmation services at some point.
Bolded values are statistically significant at p < .05.
Mann–Whitney U tests examining differences in access to gender affirmation across types of care (n = 33)
| Delayed/did not use primary care in the past 6 months | Ever used medical gender affirmation servicesb | |||||||
|---|---|---|---|---|---|---|---|---|
| No (n = 23) | Yes (n = 10) | U | p-value | No (n = 9) | Yes (n = 24) | U | p-value | |
| Access to gender affirmation, median (IQR)a | ||||||||
| Correct pronouns are used in healthcare setting | 3.0 (3.0,4.0) | 2.0 (1.0,3.0) | −197.5 | .052 | 3.0 (2.0,4.0) | 3.0 (2.0,4.0) | 81.5 | .540 |
| Provider apologizes if they make a mistake related to name or gender pronouns | 3.0 (3.0,4.0) | 3.0 (2.0,3.0) | −178.0 | .241 | 3.0 (2.0,4.0) | 3.0 (3.0,4.0) | 79.5 | .589 |
| Intake forms are inclusive | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −193.5 | .078 | 3.0 (3.0,4.0) | 2.0 (1.5,3.0) | 79.5 | .544 |
| Provider asks about appropriate words for body parts | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −199.0 | .047 | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | 79.5 | .404 |
| Gender neutral bathroom is available | 3.0 (2.0,4.0) | 1.5 (1.0,2.0) | −222.0 | .003 | 3.0 (3.0,4.0) | 2.5 (1.0,3.0) | 79.5 | .141 |
| Provider is knowledge about TGD populations | 3.0 (3.0,4.0) | 2.5 (2.0,3.0) | −190.0 | .099 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 53.0 | .551 |
| Provider can offer resources and referrals | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | −199.0 | .046 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 43.5 | .323 |
| Provider is knowledgeable about insurance needs of TGD people | 3.0 (2.0,4.0) | 2.0 (2.0,3.0) | −190.0 | .102 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 38.5 | .230 |
| Delayed/did not use primary care in the past 6 months | Ever used medical gender affirmation servicesb | |||||||
|---|---|---|---|---|---|---|---|---|
| No (n = 23) | Yes (n = 10) | U | p-value | No (n = 9) | Yes (n = 24) | U | p-value | |
| Access to gender affirmation, median (IQR)a | ||||||||
| Correct pronouns are used in healthcare setting | 3.0 (3.0,4.0) | 2.0 (1.0,3.0) | −197.5 | .052 | 3.0 (2.0,4.0) | 3.0 (2.0,4.0) | 81.5 | .540 |
| Provider apologizes if they make a mistake related to name or gender pronouns | 3.0 (3.0,4.0) | 3.0 (2.0,3.0) | −178.0 | .241 | 3.0 (2.0,4.0) | 3.0 (3.0,4.0) | 79.5 | .589 |
| Intake forms are inclusive | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −193.5 | .078 | 3.0 (3.0,4.0) | 2.0 (1.5,3.0) | 79.5 | .544 |
| Provider asks about appropriate words for body parts | 3.0 (2.0,4.0) | 2.0 (1.0,2.0) | −199.0 | .047 | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | 79.5 | .404 |
| Gender neutral bathroom is available | 3.0 (2.0,4.0) | 1.5 (1.0,2.0) | −222.0 | .003 | 3.0 (3.0,4.0) | 2.5 (1.0,3.0) | 79.5 | .141 |
| Provider is knowledge about TGD populations | 3.0 (3.0,4.0) | 2.5 (2.0,3.0) | −190.0 | .099 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 53.0 | .551 |
| Provider can offer resources and referrals | 3.0 (2.0,4.0) | 2.0 (1.0,3.0) | −199.0 | .046 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 43.5 | .323 |
| Provider is knowledgeable about insurance needs of TGD people | 3.0 (2.0,4.0) | 2.0 (2.0,3.0) | −190.0 | .102 | 3.0 (3.0,4.0) | 3.0 (2.0,4.0) | 38.5 | .230 |
aThe access to gender affirmation scale is on a 4-point scale ranging from 1 to 4, with 1 indicating strongly disagree and 4 indicating strongly agree to the gender affirmation in health care scale items.
bAll participants quantitatively reported having plans to use medical gender affirmation services at some point.
Bolded values are statistically significant at p < .05.
Discussion
Findings demonstrate the ways in which experiences of gender affirmation serve as a resilience resource for accessing healthcare, including before, during, and after the healthcare visit. Most research aimed at understanding healthcare experiences among TGD populations focus on the patient and provider interaction [11, 20, 40]; however, it is important to understand how stigma and gender affirmation play a role through multiple aspects of the healthcare experience to guide clinical care, healthcare setting protocols (e.g., in the waiting room), and pharmacy experiences. Through understanding both stigma and gender affirmation across the healthcare experience, these findings highlight how resilience resources can be a positive response to stigma, as a way to improve healthcare access and healthcare experiences for TGD youth of color. This specific focus on resilience resources (rather than resilience assets) places the burden for fostering resilience on the healthcare settings (and other systems/institutions), instead of on TGD youth of color [41].
Understanding Stigma and Gender Affirmation Across the Healthcare Experience
For the qualitative findings, even though all aspects of care were discussed, discussions of the patient/provider interaction included the richest data. Participants described providers who are not knowledgeable and either intentionally or unintentionally engage in stigmatizing behaviors towards their patients. On the contrary, participants also described providers who can meet their basic gender affirmation needs, highlighting ways in which providers can play a role in fostering resilience. The most positive patient/provider interactions included those in which providers helped their patients navigate the healthcare system (including health insurance and pharmacies); were accepting and understanding; made themselves available; and helped their patients navigate potentially difficult experiences occurring outside of the healthcare setting. At the very least, participants felt that it was important for their provider to use the correct pronouns, treat them with respect, and have some basic knowledge about TGD experiences and healthcare. Findings from this analysis are consistent with recommendations made in previous research examining healthcare experiences with TGD youth, such as the importance of increased provider knowledge and the consistent use of correct names and pronouns [11, 39, 44]. The current study builds on extant literature by further elucidating the role that stigma and gender affirmation play for TGD youth of color across the entire healthcare experience and across multiple healthcare settings.
Anticipated Stigma and Motivation to Seek Care
Healthcare experiences played a role in the motivation to seek care for all healthcare settings, but to varying degrees. These discussions support the conceptualization of stigma in Minority Stress Theory [27–30], which understands stigma as occurring through multiple mechanisms, including both enacted and anticipated stigma. However, these findings build on our understanding of anticipated stigma within healthcare settings, by highlighting that the response to anticipated stigma can vary depending on the type of healthcare that is needed. Participants described being more likely to avoid primary care due to anticipated stigma, especially when compared with medical gender affirmation services.
Differences in motivation across types of care was confirmed by quantitative findings, which found significant associations between gender affirmation within healthcare and avoidance of primary care, but no associations with use of medical gender affirmation. For those seeking medical gender affirmation, outside factors beyond the healthcare experience played a larger role in decisions to seek care. For example, participants discussed concerns with other social environments (e.g., home, work, school). Some research has focused on healthcare avoidance due to fears of mistreatment [8]; however, it is also important to understand how experiences and treatment outside of healthcare environments may also play a role in healthcare avoidance.
Health insurance was another factor that played a large role in the ability or motivation to seek care, especially for medical gender affirmation services. Previous studies have demonstrated that TGD people are less likely to have health insurance than cisgender people [55], and that negative experiences with health insurance are common [8]. Although research has quantitatively explored TGD people’s experiences with health insurance companies and a lack of access to healthcare due to the inability to pay for care [8], findings from this study provide a more nuanced understanding of the role of health insurance. Insurance coverage often enabled or prohibited a participant’s ability to pay for medical gender affirmation services. Participants described receiving coverage through their parents; in these cases, parental support and outness to parents played a large role in healthcare decisions. Beyond simply being concerned about having coverage to pay for care, experiences with health insurance were often described as challenging, with concerns about mis-gendering in insurance records. As such, further research is warranted to examine how insurance companies and providers can help TGD youth navigate health insurance to achieve their gender-affirming needs.
Variation Across U.S. Region
Many participants described having more difficult healthcare experiences in the U.S. South and Midwest, compared with other regions. This perspective was often described by participants who had received healthcare in more than one location in the USA, and were not necessarily living in the South or Midwest at the time of the study. These findings demonstrate that physical, social, and political state environments may play a role in experiences of stigma and gender affirmation within healthcare settings. While stigma for TGD youth of color is present across the entire USA, experiences with stigma and cultural norms can vary. For example, this is evident through state-level US policies specific to TGD populations, with state laws varying in non-discrimination protections, religious exemption laws, health insurance policies, bathroom bills, and rules for changing legal documents [52, 56]. Previous research has identified that these state-level policies (and the cultural ideologies that are both perpetuated by these policies and allow these policies to exist) are associated with access to healthcare, with more stigmatizing policies (often in the U.S. South and Midwest) being associated with less healthcare use, and more protective policies being associated with more healthcare use [52, 53]. These social and political environments may play a role in both anticipating and experiencing stigma within healthcare settings.
Gender Identity and Race/Ethnicity
There were not many differences in experiences of stigma and gender affirmation by gender identity, with the exception of seeking different types of care (e.g., HIV prevention, gynecological care). Race/ethnicity was not a salient theme throughout most IDIs; however, when discussed, participants described experiences of racism in their healthcare experiences. Though more work is needed to understand the role of both racism and transgender-related stigma in TGD youth of color’s healthcare experiences, this finding is aligned with intersectionality frameworks [31, 32] and previous research [40] that describe how multiple and interacting aspects of social identity are differentially shaped by social power and contribute to health inequities.
It is likely that race/ethnicity was not a more salient theme because this was a secondary analysis of a study examining experiences that TGD youth more generally have across the HIV continua of prevention and care [48]. The larger study over-represented TGD youth of color (comprising 86.49% of the total sample); however, a focus on race/ethnicity was not a primary aim of the study. As a result, these findings can be interpreted as being specific for TGD youth of color, but it cannot be determined if findings are unique to TGD youth of color. More work aimed at understanding the specific experiences of TGD youth of color, both inside and outside of healthcare, is needed. Research applying an intersectionality framework [31, 32], that explores the experiences of having multiple marginalized identities, may help to further understand the specific needs of TGD populations and inform public health interventions aimed at improving access to healthcare and reducing health inequities.
Implications
Findings demonstrate the need for healthcare interventions to go beyond simply training providers. Since stigma occurs across different aspects of healthcare experiences, it is critical to consider the multiple facets of gender affirmation in healthcare experiences and environments. Findings from this study are consistent with previous research that demonstrate that training for providers on TGD health is inadequate [54, 55], and can contribute to an increase in the perpetration of stigma targeted at TGD patients [40]. Current findings build on this to highlight how training must also include the larger social and political context for TGD youth of color.
Cultural humility training should be considered not only for providers and nurses, but also for administrative and front desk staff, pharmacists, and staff at health insurance companies. Distinct from cultural competency, cultural humility is an ongoing lifelong process of critical self-reflection and self-evaluation of the power dynamics occurring between providers and their patients who hold various marginalized identities [57]. This training recognizes that providers can never become fully competent in the experiences of others; however, they can practice empathy and listen to their TGD patients from a place of understanding, acceptance, and respect and with the recognition that imbalanced power dynamics exist.
Changes to healthcare environments should also extend beyond training to include physical changes to the healthcare environment and healthcare systems. For example, based on participants’ experiences, healthcare environments should include TGD-inclusive and gender-affirming intake forms and safe and thoughtful standards for how to call names in waiting rooms. Healthcare settings and health insurance companies should also provide inclusive and gender-affirming electronic medical records that allow for gender identity options beyond a male/female binary, enable patients to include their correct gender and name even if it is incongruent with their government ID, and allow for changes to gender and names to easily occur within these systems.
Many of participants’ most stigmatizing and challenging healthcare experiences occurred within emergency rooms and urgent care clinics. For example, in these settings participants described being refused care or being asked incredibly inappropriate questions. This is especially problematic because previous research demonstrates that TGD populations are more likely to utilize emergency services, compared to the general population [55]. As providers and healthcare staff begin to get more training on cultural humility, it is important to include these emergency care environments. Training and changes to healthcare settings should not only occur in environments where TGD youth have opportunities to build lasting relationships with providers and staff, but also within healthcare settings where urgent care is provided.
Finally, interventions can consider ways to reduce experiences of stigma and increase gender affirmation outside of healthcare settings in order to address the motivation and ability for TGD youth of color to seek needed care. Experiences with families, schools, and work all influenced participants’ motivation and ability to seek care, especially medical gender affirmation services. Therefore, interventions should aim to increase education and acceptance among families, peers, and co-workers, in addition to within healthcare settings. Acceptance among parents/guardians is especially important, since TGD youth often rely on parents/guardians for resources such as housing, transportation, and healthcare payment. These interventions should be developed through collaborative partnerships with TGD youth of color to ensure that they are based on the lived experiences of these communities.
Limitations
Caution should be taken before generalizing findings because this is a purposive sample. Though the parent study included other gender diverse youth (e.g., non-binary), after limiting the sample based on other criteria, there were not enough of these individuals to include in the analysis. In addition, even though the parent study recruited a diverse sample of TGD youth, comprised mostly of TGD youth of color, the overall study focused on more general experiences of TGD youth. Therefore, there were not specific quantitative measures or qualitative probes on experiences of race/ethnicity and racism. Additional research is needed to further explore how race/ethnicity and racism influence stigma and gender affirmation within healthcare.
We also restricted our analyses to participants who indicated that gender affirmation was important to them in order to better understand gender affirmation experiences. However, gender affirmation is a fluid and dynamic process whereby salience and needs may vary over time [43, 44]; therefore, future research is warranted to understand gender affirmation across diverse samples of TGD populations, including those who do not report that gender affirmation is important. Finally, due to funding constraints, we were unable to conduct member checking after analysis. All authors are immersed in trans-led community-engaged research; the lack of community engagement in the analyses and interpretation is a limitation and important area for future research.
Conclusions
Despite limitations, findings build on previous research to highlight TGD youth of color’s experiences of stigma and gender affirmation across all aspects of the healthcare experience. More work focusing on gender affirmation as a resilience resource, both inside and outside of healthcare, is needed to fully understand the experiences of TGD youth of color. Identifying gender affirmation as a resilience resource (rather than a resilience asset) places the responsibility of fostering resilience on systems and institutions, including healthcare settings, instead of placing this burden on TGD populations. Public health interventions that foster gender affirmation across all aspects of healthcare, and also outside of the healthcare environment, may help to increase access to healthcare and reduce health inequities experienced by TGD youth of color.
Acknowledgements
This work was supported by The Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) from the National Institutes of Health (U01 HD 040533 and U01 HD 040474) through the National Institute of Child Health and Human Development (B. Kapogiannis, S. Lee), with supplemental funding from the National Institutes on Drug Abuse and Mental Health. This research also received support from the Population Research Training grant (T32 HD007168) and the Population Research Infrastructure Program (P2C HD050924) awarded to the University of North Carolina at Chapel Hill by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
The authors would also like to thank the investigators and staff at the following sites that participated in this study: University of South Florida, Tampa (Emmanuel, Straub, Bruce, and Kerr), Children’s Hospital of Los Angeles (Belzer, Tucker, and Franco), Children’s National Medical Center (D’Angelo, Trexler, Carr, and Sinkfield), Children’s Hospital of Philadelphia (Douglas, Tanney, DiBenedetto, Franklin, and Smith), John H. Stroger Jr. Hospital of Cook County and the Ruth M. Rothstein CORE Center (Henry-Reid, Bojan, and Balthazar), Montefiore Medical Center (Futterman, Campos, Wesp, Nazario, and Reopell), Tulane University Health Sciences Center (Abdalian, Kozina, Baker, and Wilkes), University of Miami School of Medicine (Friedman and Maturo), St. Jude’s Children’s Research Hospital (Gaur, Flynn, Dillard, and Hurd-Sawyer), Baylor College of Medicine (Paul, Head, and Sierra), Wayne State University (Secord, Cromer, Walters, and Houston), Johns Hopkins University (George-Agwu, Anderson, and Worrel-Thorne), Fenway Institute (Mayer, Dormitzer, Massaquoi, and Gelman), University of Colorado Denver (Reirden, Hahn, and Bernath). Network, scientific, and logistical support was provided by the ATN Coordinating Center (C. Wilson and C. Partlow) at The University of Alabama at Birmingham and the ATN 130 protocol team. Network operations and data management support was provided by the ATN Data and Operations Center at Westat, Inc (G. Price). The authors are grateful to the members of the Affirming Voices for Action (AVA) Youth Advisory Board for their insight and guidance. We would like to thank the trans youth who raised their voices and shared their experiences with us. We hear you.
Compliance with Ethical Standards
Authors’ Statement of Conflict of Interest and Adherence to Ethical Standards Authors Tamar Goldenberg, Kristi E. Gamarel, Sari L. Reisner, Laura Jadwin-Cakmak, Gary W. Harper declare that they have no conflict of interest. All procedures, including the informed consent process, were conducted in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.
Authors’ Contributions
T.G. conceptualized the secondary data analysis, conducted the analysis, drafted the initial paper, and revised the manuscript. K.E.G. provided guidance on the analysis, assisted with drafting the initial paper, and revised the manuscript. S.L.R. conceptualized the study, provided guidance on the analysis, and provided feedback on initial paper and revised manuscript. L.J.-C. oversaw the study procedures and data collection, and provided feedback on the initial paper and revised manuscript. G.W.H. conceptualized the study, assisted with conceptualization of the data analysis, provided guidance on the analysis, assisted with drafting the initial paper, and revised the manuscript.
Ethical Approval
Study activities were approved by the Institutional Review Boards at 14 ATN sites and the University of Michigan.
Informed Consent
All participants provided informed consent.
