Transgender Adolescents’ Experiences in Primary Care: A Qualitative Study

Abstract

Purpose

Transgender adults may avoid medical settings due to concerns about discrimination or past experiences of maltreatment. Emerging evidence shows improved outcomes and psychosocial functioning when transgender adolescents receive gender-affirming care, but little is known about transgender adolescents’ experiences in primary care. The objective of this study was to learn about the experiences in primary care of transgender and gender nonconforming (TGN) adolescents and their recommendations for primary care practices and clinicians.

Methods

Participants were recruited from primary care clinics, gender care clinics, and list-serves. Semi-structured qualitative interviews were conducted with 20 TGN adolescents aged 13-21 years (75% White/non-Hispanic, average age 16.7 years). Participants answered questions about primary care experiences, how to improve care, suggestions regarding how to ask about gender identity, and recommendations for making offices more welcoming for TGN adolescents. Interviews were transcribed verbatim, coded, and analyzed for themes.

Results

Overall, participants reported positive experiences in primary care. Most participants commented on distress resulting from being called the incorrect name or the incorrect pronoun. Several concrete recommendations emerged from the interviews, including asking all patients about their gender identity and pronouns at every primary care visit, and not asking about gender identity when caregivers are in the room. Participants emphasized the importance of using their affirmed name and pronouns and wanted providers to be knowledgeable about transgender health.

Conclusion

Delivery of primary care services for transgender adolescents may be optimized if offices provide a welcoming environment, use correct names and pronouns, and discuss gender confidentially with patients.

Implications and contributions

Emerging evidence shows improved outcomes and psychosocial functioning when transgender adolescents receive gender-affirming care. Overall, transgender adolescents in this study had positive experiences in primary care. However, many transgender adolescents experienced being called the incorrect name or pronouns, which may compromise patient-provider trust and care.

Introduction

Estimates by the Williams Institute at the University of California, Los Angeles School of Law put the transgender (gender minority) adult population at 0.58% of the population, or a total of nearly 1.4 million Americans,[1] with an estimated 150,000 transgender youth in the United States.[2] For transgender and gender nonconforming (TGN) adolescents who have a gender identity different than their sex assigned at birth, the prevalence of adverse health exposures and outcomes is alarming. Compared to their cisgender peers, transgender adolescents are at higher risk for numerous adverse outcomes, including depression, bullying victimization, and substance use.[3–5] These significant health disparities may be related to social stigma and discrimination associated with being TGN. [6]

It is common for transgender individuals to avoid medical settings due to concerns about discrimination or past experiences of maltreatment.[7,8] A survey of transgender adults in the United States found that one-third of respondents had a negative experience with a health care provider (such as being verbally harassed or refused treatment), and nearly one-fourth avoided medical care due to fear of being mistreated due to their gender identity. [7] It is not known how many of these experiences occurred in childhood. Negative experiences with providers may be related to a lack of exposure to transgender health among clinicians. An average of only five hours is dedicated to lesbian, gay, bisexual, transgender, and queer (LGBTQ) health in medical school,[9] and medical students’ self-knowledge of transgender health is significantly lower than their self-knowledge of lesbian, gay and bisexual health.[10] Clinicians may be unaware of resources for caring for transgender patients, such as the National LGBT Health Education Center[11] and the University of California San Francisco Center of Excellence for Transgender Health.[12]

Quality care for adolescents in general calls for special attention to the unique health needs of this age group.[13,14] Barriers to preventative care for adolescents include transportation and privacy/confidentiality.[15] In order to decrease health disparities for TGN adolescents specifically, it is essential that clinical experiences are positive. A focus group of transgender youth in New England sought advice on how doctors should behave in medical appointments. [16] They mentioned the importance of using the affirmed name and pronoun and the importance of puberty blockers but did not explore the participants’ experiences in primary care. The aim of this study was to learn about TGN adolescents’ experiences in primary care and their recommendations for primary care offices and clinicians.

Patients and Methods

We conducted in-person, semi-structured qualitative interviews with a convenience sample of TGN adolescents from June 2016 through February 2017. Participants were recruited primarily from adolescent primary care and gender clinics in Boston, Massachusetts and Providence, Rhode Island. Patients were referred by their provider or recruited through clinic by a research assistant. Participants were also recruited from TGN-specific Facebook groups, LGBTQ list-serves, related studies at Boston Children’s Hospital, and via snowball sampling. Participants were required to identify as TGN and speak English. This protocol had a waiver of parental consent and was approved by the Boston Children’s Hospital Institutional Review Board.

Participants

Twenty TGN adolescents, ages 13-21 years (M = 16.7 years), completed interviews (see Table 1 for demographics). Self-reported race/ethnicity was 75% White/non-Hispanic, 20% multiracial, and 5% White/Hispanic. Participants reported their gender identity as follows: 4 transgender girls/women, 12 transgender boys/men, and 4 genderqueer/gender nonconforming/non-binary individuals. Of the 4 genderqueer/gender nonconforming/non-binary individuals, 2 were assigned a male sex at birth and 2 were assigned a female sex at birth. Participants lived in Massachusetts, Rhode Island, and New Hampshire.

Table 1:

Demographics of Transgender and Gender Nonconforming Adolescents who were Interviewed Regarding their Experiences in Primary Care, N=20

Age, mean (± standard deviation)	16.7 years ± 2.4 years
Age, n	13 years: 2
	14 years: 1
	15 years: 4
	16 years: 5
	17 years: 1
	18 years: 2
	19 years: 2
	20 years: 1
	21 years: 2
Sex assigned at birth, n (%)	Female: 14 (70)
	Male: 6 (30)
Gender identity,a n (%)	Female/ trans female/trans woman: 4 (20)
	Male/trans male/trans man: 12 (60)
	Gender queer/gender nonconforming/non-binary: 4(20)
Race/ethnicity,b n (%)	White: 16 (80)
	Mixed: 4 (20)
Hispanic, n (%)	Yes: 2 (10)
	No: 18 (90)
Doctor visit in the past year, n (%)	Yes: 14 (70)
	No: 6 (30)
Primary care visit in the past year, n (%)	Yes: 17 (85)
	No: 3 (15)

^a:“What is your current gender identity? (check all that apply)” with response options of male, female, trans male/trans man, trans female/trans woman, genderqueer/ gender nonconforming, different identity (please state).

^b:Responses for race/ethnicity were: Black/Native American/Alaskan Native /White; Asian/White; Native American/Alaskan Native/White.

Data Collection

Participants completed a brief demographic questionnaire that included questions about 1) age in years; 2) gender identity: “What is your current gender identity? (check all that apply)” with response options of male, female, trans male/trans man, trans female/trans woman, genderqueer/gender nonconforming, different identity; and 3) whether they had seen a doctor or their primary care provider in the past year. Participants completed a single semi-structured interview that asked them to describe their experiences in primary care, imagine their ideal physician visit and office setting, and provide recommendations for how primary care providers and offices should ask about gender identity. Interviews were conducted in person or via Vidyo, a secure video platform, and lasted 30-75 minutes.

Data Analysis

Interviews were audio recorded and transcribed verbatim and coded using Dedoose,[17] an online program for mixed methods analysis. A thematic analysis approach[18,19] was used to identify themes across interviews. Thematic analysis contains three steps: immersion in the topic, identification of possible themes, and reviewing of themes.[18] Using a sample of interview transcripts, research team members independently identified initial themes and developed code book drafts before reaching consensus on a final codebook that most parsimoniously captured common ideas from the interviews. Each interview was coded by two research team members. Throughout these processes, the research team regularly met to consult about code book development, discuss discrepancies, and recode transcripts as needed until final coding was reached.

Results

Several themes emerged from the interviews, and were divided into two “experiences” themes, which described previous experiences in primary care, and three “recommendations” themes that described recommendations for future experiences in primary care (see Table 2). Examples from each theme are described in greater detail below. Gender identity labels used for the results were chosen by the participants.

Table 2:

Themes, subthemes, and codes from interview transcripts

Experiences Themes	Subthemes
1. What makes primary care experiences affirming, positive, or neutral?	Primary care provider Other office staff Office space or clinic environment
2. What makes primary care experiences non-affirming or negative?	Primary care provider Other office staff Office space or clinic environment
Recommendations Themes	Codes
1. Recommendations for health care settings	Recommendations about office forms Recommendations about office form privacy Recommendations for office Recommendations about physical office space
2. Recommendations for health care staff	Recommendations for office staff Recommendations for providers Recommendations about privacy Recommendations for communication Recommendation for knowledge Recommendations regarding gender identity Recommendations about name use Recommendations about pronoun use
3. Recommendations for the physical exam	Recommendations for the genital exam

Experiences Theme 1: What makes primary care experiences affirming, positive, or neutral?

Overall, participants reported positive, affirming experiences with their primary care providers. Positive or neutral experiences were categorized into three subthemes: primary care provider, other office staff, and the office space or clinical environment. One 14-year-old female/trans female/trans woman participant described her primary care provider, “When I first told him that I was trans, he just, like, chuckled a little bit. Like, at first he didn’t really know what to think, and then he just, like, he said, ‘Oh, you’re serious?…In that case, what do you want your name to be?’… And then ever since then, he called me [my affirmed name]. He’s the one that doesn’t mess up ever.” The participants also emphasized that they liked being treated like any other patient, rather than providers focusing on their gender identity. An 18-year-old trans male/trans man said, “… [the doctor] treated me like a normal person and respected what I said, took me seriously because transgender or not, that’s hard to come across when you’re kind of a teen, kid person.” Established and trustworthy relationships with doctors made participants feel welcome in the medical office. Affirming provider responses to gender were described as important for continuing to see a particular provider. An 18-year-old male/trans male/trans man participant said that with regards to using his affirmed name, “… [my pediatrician] was cool with it. There was no, like, negative reaction or anything, which would have sucked if there had been. I probably would not still be seeing her.”

Participants also described neutral interactions with providers. One participant had never been called the wrong name “Because my full name is unisex and I don’t plan on changing it” (19-year-old male/transmale/trans man participant). Another respondent said “… In terms of, like, specifically feeling welcoming, I don’t necessarily think that there’s an abundance of materials about women’s issues, or LGBT issues, or something…. But they’re not, like, unwelcoming. It’s not like I have had specifically negative experiences in those spaces.” (21-year-old gender queer/gender nonconforming participant).

The physical space of the clinic also created a welcoming environment for participants. An 18-year-old male/trans male/man said, “You know what does make me feel welcome, I realized, is because there are pamphlets and stuff out. It’s nice when they put out trans-related pamphlets, even just regular LGBT pamphlets.” Other comments were not specifically related to gender identity or sexual orientation. For example, participants found colorful walls, posters, and fish tanks to be welcoming.

Experiences Theme 2: What makes primary care experiences non-affirming or negative?

Although participants reported affirming experiences overall, nearly all participants also reported non-affirming experiences. These experiences were categorized into three subthemes (see Table 2). When non-affirming experiences occurred, participants described experiencing associated emotions, ranging from frustration to fear for safety. A 14-year-old female participant recalled an experience with a medical office receptionist, “And she kept calling me [my birth name], and my mom and I corrected her several times, and she kept on trying to scream out [my birth name]…but I’m kind of scared because, like, what if that happens [and] I get weird looks from people. And if, like, there’s people that don’t like trans people and they hear a nurse call me [my birth name] even though I’m wearing makeup and heels, I’m scared that could happen.”

Several participants had the experience of needing to teach their pediatrician about transgender health. One 20-year-old male participant described, “[My previous doctor] was not experienced [with transgender health] and it was a little frustrating at first. She was basically learning through me, and so that was tough.” Another 18-year-old male/trans male/trans man said, “[My pediatrician] didn’t really say anything about [me being transgender], which I guess is a good thing and not the best thing, because I would have loved to hear some informative stuff from my pediatrician, to know that I’m not the one educating my doctor or something.”

For the office space or clinical environment, participants noted that having to wear bracelets with the wrong name or lack of a gender-neutral bathroom contributed to negative experiences.

Some participants reported enduring others’ use of their given name rather than their affirmed name. As a 15-year-old gender queer/gender nonconforming/non-binary participant described, “…It was more annoying than anything else. I guess it hurts a little bit but you get used to it, especially when you are first transitioning, then people are constantly calling you by the wrong name, you kind of just don’t feel as sensitive to it after a while.” Another participant (16-year-old trans male/trans man) said, “I didn’t really know how to say anything about it because I had not come out to these doctors…so it was really kind of like silencing the cringing pain of being called the wrong name and stuff.” Some adolescents also reported non-affirming experiences with pronoun use. Another 16-year-old transgender male said, “I think the only thing was that, like, they used my first name, but they didn’t use the pronouns I preferred. And I wasn’t sure if they forgot or they didn’t know that I had changed pronouns or anything. But that was kind of frustrating to me.”

Of the three participants who did not have a visit with their primary care provider in the past year, one person (a 14-year-old female) reported non-affirming experiences with office staff who repeatedly used the incorrect name and pronouns. This led the participant to avoid medical care on one occasion: “One time I came home from school because I felt really sick, and like, it wasn’t like a regular sick or stomach bug… And I didn’t tell my mom to take me to the doctor because I didn’t know what they were gonna say or, like, call me or anything… I was pretty much petrified.”

Recommendations Theme 1: Health Care Settings

Participants had several recommendations for how to make primary care offices more welcoming for TGN adolescents (see Table 3). Nearly all participants liked the idea of adding a question about gender identity and/or pronouns on intake forms at medical offices. As an 18-year-old male/trans male/trans man participant described, “I feel like [pediatrician offices] should definitely do that, especially if people aren’t really ready to come out or something. If they still have that option of letting their doctor know, that’s a really good start, because I wish I could have done that, because it would have been nice to have the backing support of my doctor to explain [being transgender] to my mom.” Having this information on a form would also be a way to start the conversation for patients, “Because sometimes people are afraid to speak up for the first time” (18-year-old trans male/trans man).

Table 3:

Recommendations on How to Make Primary Care Offices More Welcoming to Transgender and Gender Nonconforming Adolescents

Ask all patients at every visit about gender identity. Providers should discuss gender identity with patients without caregivers in the room. All staff should ask about pronouns (and because pronouns can change, ask at all visits). Genitalia/biological terminology can be distressing for patients. Use gender neutral language to describe genitalia and biology. Providers can acknowledge that they do not know everything and that they want to be corrected if they make a mistake. Be ready with resources and referrals for patients who are transgender or gender nonconforming. Have brochures in the office that are diverse, including diverse gender identities. If you mis-gender someone or use the incorrect pronouns to address a patient, apologize. Have a gender neutral bathroom available.

However, participants also mentioned concerns about privacy related to having gender identity on intake forms. A 14-year-old female participant stated that with regards to forms in clinic, “I do feel that privacy is a big thing that we should have.” She suggested a checkbox on forms to indicate wanting to speak with the doctor in private. Another option was suggested by a 15-year-old trans male/trans man participant: “I think a safer bet would be to do it [collect gender identity] while maybe [the patient is] alone in the room with the doctor.” When asked about the best time to discuss gender identity, an 18-year-old trans male/trans man replied: “Probably privately because you don’t know how those parents are gonna react, because I personally have experienced having a parent in the room reacting very badly with the trans stuff and…he yelled at the doctors and stuff. So I feel like if you are in front of parents, you’re really putting the patient at risk of a lot of emotional and, you know, who knows, physical, verbal, just abuse because a lot of parents aren’t ready for that, or they will, they just have to take their time. Not every patient has a supporting, loving family.”

With regards to the clinic space, participants liked LGBTQ-specific posters or pamphlets in the waiting area. Signs of an affirming clinic did not always need to be large. One 16-year-old male/trans male/trans man participant said, “I feel like [rainbow lanyards] are going to welcome a lot of non-gender, transgender, nonconforming kids…I see some rainbow, not posters, but little flags, little things, but as a trans person it just immediately sticks out.”

Recommendation Theme 2: Health Care Staff

Participants also had recommendations for health care interactions during clinic visits. An 18-year-old trans male/trans man participant stated: “Sometimes, like, biological terminology is kind of bothersome. If there’s just a way to generalize what you’re talking about… just being like, ‘genitalia,’ you know? Because your doctor knows what your biological sex is. But I don’t know, just hearing it can be really uncomfortable and, like, stressful.” Health care staff should take note of a patient’s affirmed name and pronouns and use them, as well as recording them in the electronic medical record. Additional recommendations for health care interactions are listed in Table 3.

Recommendation Theme 3: The Physical Exam

Participants mainly had suggestions for the physical exam with regards to the genital exam. A 16-year-old male, trans male/man said,” when doing simple procedures, always check if it’s okay to touch a person somewhere.” A 15-year-old genderqueer gender nonconforming participant said exams “involving the genitals should be as quick as possible because you tend, people tend to feel kind of dysphoric when those are brought up.” That participant recommended that “the exam portion of, like, genital regions and your chest should probably just go by as quick as possible and nobody mentions anything.”

Discussion

The aim of this study was to learn about TGN adolescents’ experiences in primary care and their recommendations for primary care offices and clinicians. The results provide valuable insights into a vulnerable population’s health care experiences and offer guidance for future care. Previous research on the experiences of adolescent health care in general can provide context for the current study. Previous research on adolescent-friendly care found staff attitude, communication, and medical competency to be important,[20] similar to what participants in this study described. However, other domains noted to be important for adolescent care, such as guideline-driven care and health outcomes[20] did not arise in the current study. Primary care centers can better care for patients by being “LGBTQ friendly” in addition to being “adolescent friendly.”[21] These findings build on the recommendations from a focus group of TGN adolescents by specifically examining TGN experiences in primary care.[16]

We know from adult literature that the majority of TGN individuals have non-affirming experiences in health care settings, making the findings from the current study unexpected because the majority of TGN youth participants had positive and affirming health care interactions. Surveys of TGN adults have found that fears of discrimination and maltreatment may cause them to delay primary care[22]; other barriers are insurance coverage and affordability.[23] A survey of health care providers found that they overall held positive attitudes toward TGN individuals; compared to a prior study conducted several decades ago, attitudes have improved drastically.[24] It is not clear why a gap exists between providers viewing themselves as accepting and TGN adult patients perceiving maltreatment. Providers and adult TGN patients may have different ideas of what it means to be affirming, highlighting the importance of interviewing TGN individuals about their experiences, as the current study has done.

Emerging evidence shows improved outcomes and psychosocial functioning when TGN individuals, particularly adolescents, receive gender affirming care, meaning that care is supportive and respects the individual’s gender identity.[25–27] It is essential that providers educate themselves if they feel they lack training as a way to provide patient-centered care to LGBTQ patients.[28] Some resources already exist to assist health care professionals, including the National LGBT Health Education Center publications [11] and the American Medical Association.[29] Primary care providers can play a significant role in connecting TGN adolescents to gender affirming services, such as mental health therapy, psychiatry, and specialty clinics,[30] provide social support to patients and families,[31] and lay the groundwork for future affirming experiences in adult health care. There are improved outcomes with using TGN individuals’ affirmed name, including decreased depressive symptoms, suicidal ideation and suicidal behavior.[32] However, primary care providers cannot provide support if they are unaware that their patient is TGN or if they lack the skills and knowledge to effectively care for TGN patients. Thus, adolescents must have the opportunity to disclose their gender identity in the clinic and they must feel that they are receiving care from knowledgeable and accepting health care providers.

This study has limitations. Participants were recruited from cities in New England; their experiences may not be generalizable to rural settings or other parts of the United States. Our sample was primarily White non-Hispanic, which did not allow for examination of how TGN adolescents who hold several marginalized identities (such as being Black and transgender) experience primary care visits. This would be a valuable future direction to better understand how to care for a more diverse population. The majority of the participants (n=12) identified as trans male/trans man. The experiences of trans-feminine and non-binary adolescents are underrepresented. Moreover, most participants reported overall positive experiences with primary care, which may be the result of selection bias of adolescents who were recruited at places where providers were better trained to care for TGN patients. Patients in these settings may have felt more comfortable joining the study than TGN patients in settings where providers had less training. Notably, the lack of reporting negative health experiences does not necessarily mean that they did not exist among this study’s participants and among TGN adolescents more broadly. The cultural context of TGN adolescents in the United States is one of immense stigma and discrimination.[22,33–35] Participants in this study may not have felt comfortable sharing negative experiences.

Despite these limitations, this study has several strengths. The 20 TGN adolescents who were interviewed for this study provided valuable insights in their own words regarding ways that their gender identity has affected their medical care. The concrete recommendations participants gave may be easily implemented in primary care offices, and at very low cost. Low cost recommendations include posters, lanyards, pins, training in communication styles for clinicians and staff, and allowing additional time during clinic visits for confidential conversations. Future directions include evaluation of these practices in terms of ease of implementation in the medical practice and perceived effectiveness by TGN adolescent patients. Additionally, findings from this study provide justification for electronic medical records to allow for affirmed names, gender identity, and pronouns in documentation. Research demonstrates that asking these questions in an adult clinic population is acceptable and provides helpful information to providers.[36,37] This study extends these findings to TGN adolescent patients.

Conclusion

Results from this study demonstrated that although the majority of TGN adolescents reported positive experiences with their primary care provider, adolescents still reported some non-affirming experiences, especially related to name and pronoun use. In addition, TGN adolescents in this study offered several recommendations to improve care in their medical home to better meet their needs. Primary care providers need to be ready to care for all patients in an affirming and welcoming manner. The significance of gender affirming care in the clinical environment to TGN adolescents is becoming increasingly clear.[38] Professional organizations, such as the American Academy of Pediatrics and Society for Adolescent Health and Medicine, have policy or position statements on the urgent need for gender affirming care, stating that “transgender adolescents need to be supported and affirmed.”[30,39] It is unacceptable for TGN adolescent patients to report negative or discriminatory experiences due to invalidation of their gender identity. Delivery of primary care services for transgender adolescents may be optimized if gender identity is routinely assessed and discussed confidentially with patients.

Abbreviations:

TGN

transgender and gender non-conforming

LGBTQ

Lesbian, gay, bisexual, transgender and queer