Transgender Youth Experiences and Perspectives Related to HIV Preventive Services

A purposive sample of transgender youth was recruited via advertisements posted on Facebook and with transgender-serving youth organizations (eg, the Gay, Lesbian, and Straight Education Network, a national education organization for lesbian, gay, bisexual, and transgender [LGBT] issues; and the AGLY Network, an alliance of LGBT youth) for online focus groups. Organizations posted advertisements on Listservs and social media pages. Advertisements were developed with input from a youth community advisory board (YCAB). The YCAB, convened by the research team, met monthly for 2 years and provided a forum for community input into the development of the research project. The YCAB, recruited from local youth organizations and health centers, was comprised of 28 diverse LGBT-identifying youth aged 13 to 18 years (eg, 50% transgender, 7% gender nonconforming, 38% African American, 18% Hispanic, and 7% Hispanic African American). Eligibility criteria for the online focus groups included the following: (1) age 13 to 24 years, (2) identify as transgender or gender identity differs from sex assigned at birth, (3) able to understand and/or read English, and (4) have access to a computer and/or Internet during the study dates and times. Protocols were approved by the Fenway Health Institutional Review Board. Participants were remunerated $30.

Interested youth completed an online eligibility screener and electronic informed assent or consent. Parental permission was waived for youth <18 years of age. Participants were invited to 1 of 2 3-day continuous, asynchronous, online focus groups. The online asynchronous methodology was selected because of its convenience and flexibility in time of day when youth can engage in the discussion and ease of use among a population that has fully integrated technology into their lives, thus reducing barriers to participation and increasing geographic diversity in a cost-effective manner.²⁰  The 2 groups were divided by age: younger participants (13–17 years old) in 1 group and older participants (18–24 years old) in another. Reminders were sent via phone, e-mail, and/or text message. Participants were assigned a pseudonym and given instructions on attending their assigned group (date, time, and login information) as well as how to use the platform. Participants were asked to engage in the online discussion at least 2 times per day, answer all of the posted questions, and engage with each other by responding to each other’s posts. Questions were posted each morning, and as youth responded to the questions, additional probing questions were added throughout the day. Youth could join in the discussion from different time zones before or after school and other activities at their convenience.

The focus groups were conducted in March 2018 and April 2018, and InsideHeads (the owner and operator of the online platform) provided technical support. One investigator led the discussions, and 3 investigators observed throughout the day, taking field notes and suggesting additional probing questions. Demographic data were collected online by using Qualtrics.

Demographic data included age, sex assigned at birth, gender identity, sex of sexual partners (if sexually active), sexual attraction, sexual orientation, race, and ethnicity. Sexual orientation and gender identity response options were offered to participants by using established best practices of sexual orientation and gender identity data collection²¹  and were ultimately determined by participant self-report. Sexually active was defined as having had oral, vaginal or frontal, or anal sex. Our discussion guide, which was informed by leading experts in the field and available literature, was developed to uncover how gender identity contributes to or intersects with HIV risk and HIV prevention; we explored the following: (1) identity formation and social support, (2) forming romantic and/or sexual relationships, (3) sexual education, and (4) knowledge and/or attitudes related to HIV prevention and experiences with HIV preventive services (Table 1). We sought to understand how youth communicated with family, friends, romantic and/or sexual partners, and health care providers about sexual activity. We asked about where they obtained sexual health information, their views on sexual health education, and their experiences with accessing or obtaining HIV preventive services.

Transcript data were downloaded from the online platform and managed by using NVivo 11 (QSR International). Content analysis was used to objectively engage the data and identify thematic patterns.^22,23  Three investigators (H.B.F., T.W., and S.G.) conducted preliminary coding and developed a topical codebook. Two investigators (T.W. and S.G.) continued coding the complete data set and routinely met to review codes, definitions, and concepts to ensure accuracy across coders. Then, the entire analysis team (H.B.F., T.W., S.G., S.R.C., and B.P.W.) reviewed coded data, examined relationships, and combined codes into broader categories and themes. Ongoing discussion and reexamination led to the development of final themes. Descriptive analysis of demographic data included means for continuous variables and percentages for nominal data.

A total of 30 transgender youth participated (Table 2): 11 13- to 18-year-olds and 19 18- to 24-year-olds. The average age was 18.6 years. The racial and/or ethnic demographics were 70% white, 7% African American, 3% Asian American, 17% multiracial, and 3% other; 10% identified as Hispanic. Participants were given multiple options for how to self-identify their gender by using recommended terms. Reported identities were 27% transgender male, 17% transgender female, 10% transgender, 10% genderqueer, and 7% male; 27% used ≥1 term, and 3% identified as unsure. The majority reported being assigned female sex at birth (80%) and being sexually active (70%). Youth reported a wide range of sexual orientations. There was representation from all geographic regions of the United States, with about half of the respondents residing in the Northeast.

Youth were active participants in the online discussions. Including additional probing questions from the research team, a total of 55 questions were asked, and the mean response rate was 54.7 responses. Plus, youth averaged an additional 7 responses from comments from other participants. It was evident that youth spent meaningful amounts of time articulating their responses because typed words per question or probe ranged appropriately, depending on the type of question, from 1 to 400 words and averaged 31 words. Level of engagement did not differ on the basis of participant age or which group they attended.

Four common themes emerged: (1) barriers to self-efficacy in sexual decision-making; (2) safety concerns, fear, and other challenges in forming romantic and/or sexual relationships; (3) need for support and education; and (4) desire for affirmative and culturally competent experiences and interactions. Themes were consistent across individuals and age groups. Themes and exemplar quotes are detailed in Table 3.

Participants expressed a need for services to help them build communication skills for sexual consent. The majority described communication with their romantic and/or sexual partner as challenging. Several had difficulty with self-advocacy, particularly when negotiating sexual preferences with cisgender partners. When discussing condom use and safer behaviors, one participant shared, “I almost never ask for things because of what I think is internal pressure to be grateful. In my head, I’m like, ‘They’re already willing to have sex with me; I shouldn’t push my luck,’ which is terrible, but as a result, I ask for as few things as possible.”

Participants’ primary reason for delaying or avoiding sex was dissatisfaction with their body. Youth mentioned feelings of self-hate, feeling uncomfortable with their body, and needing to be in the “right headspace” to engage sexually. Participants noted that sex requires more communication when experiencing gender dysphoria, and inability to negotiate safe behaviors might lead to feeling “abused or taken advantage of.” Participants reported seeking other transgender partners who could relate to their experiences.

Participants viewed access to care, including access to condoms and lubricant, as more difficult for transgender youth. Insightfully, one noted that transgender youth are “more likely to be homeless, impoverished, mentally ill,” and these structural issues would be barriers to care and resources.

Participants voiced concerns related to fear and safety in forming romantic and/or sexual partnerships. Several recalled harassment and perceived discrimination on social media and dating applications (apps). One described, “On [this dating app], while some gay men will ignore transgender people, many of them have been blatantly transphobic to me by sending threatening messages, slurs, and telling me to leave the app.” Others described being ignored or told they “aren’t gay” and “should not use the app.” Challenges related to being fetishized or threatened by prospective cisgender partners were also discussed. Participants wanted others to understand that dating as a transgender person is “scary as hell.”

Participants did not relate to narrow heteronormative definitions of sex taught by health care providers, parents, and schools “because they don’t apply to LGBT people.” Youth described experiences with cisgender persons (both partners and/or providers) who believed that sex must include penetration. This disconnect exacerbated the existing barriers to effective communication with peers and providers about sex.

The participants’ definitions of sex were fluid and broad because “every couple is going to have a different balance of what they’re comfortable with and what they’re, like, physically capable of doing, so sex is going to mean a different thing for basically any encounter.” Youth wanted sex definitions to be inclusive of transgender identities and broad ranges of sexual behaviors. This undefined nature of sex led to difficulties in dating cisgender people who did not relate to the experience of being transgender.

Youth wanted comprehensive sexual health education with “gender-neutral language, representation of different types of relationships, and information/statistics on LGBT health” facilitated by an adult who is able to foster “open, honest discussion, someone who’s willing to acknowledge the silliness of the topic without invalidating how important the information is.” Participants frequently asserted that sexual assault and consent should be a part of curricula.

Participants wanted social support for their sexual, gender, and racial and/or ethnic identities. Some mentioned support from school but identified the need for “more representation and education for LGBT identities in school and media,” and they “would like more people to have conversations with them about sexuality while being nonbinary.” Those who also identified as a member of a racial and/or ethnic minority expressed a need for support associated with multiple minority statuses and intersectional identities. One found support from other “black, genderqueer, nonbinary people” and recognized how critical it is to have role models in their own identity formation.

Participants frequently discussed the need for affirmation and cultural competency in 4 contexts: (1) HIV prevention services, (2) interactions with health care providers, (3) interactions with parents and/or other adults, and (4) accessing information online.

Participants had variable levels of HIV prevention techniques, including condoms and/or lubricant, finding nonpenetrative ways to be intimate, HIV testing, HIV preexposure prophylaxis (PrEP), and effective communication with partners. Primary barriers to services were accessibility and affordability and a fear of exposing their sexual activity, gender identity, and/or sexual orientation to parents. Participants noted difficulty in delaying sex and/or engaging in low-risk behaviors with potential partners, especially cisgender men, because they viewed penetration as a sexual requisite. Many described difficulty in communicating with and negotiating sexual acts with partners. One mentioned learning about nonpenetrative forms of sex primarily from LGBT community spaces.

Participants reported a general understanding of the importance of HIV testing. The youth described facilitators of HIV testing as learning how to ask their partners to obtain an HIV test, having a free clinic nearby that is open late (after school), and viewing HIV testing messages at community events, such as LGBT Pride. Barriers included cost, accessibility, and fear of others learning of their sexual behaviors. One suggested that advertisements for testing should be in locations frequented by the people at greatest risk, with an online emphasis. Many participants were aware of PrEP; however, one described a health care provider dissuading PrEP use because they “would not like the side effects.”

Youth emphasized the need for gender-affirming care. Important aspects of gender-affirming care included inclusive intake forms (section for gender identity) and providers who were open and assessed their unique care needs. Participants wanted pamphlets and/or brochures with transgender representation and the use of sensitive and/or inclusive sexual health assessment questions.

Participants experienced negative and dismissive interactions with providers. Additionally, structural and/or institutional barriers hindered seeking care, including feelings of marginalization and lack of LGBT and cultural competence. One participant described a provider who did not “get the difference between gender and sexual orientation.” Another described a provider who stated that sex “isn’t really sex if you’re both girls, is it?” These experiences, participants felt, devalued their gender identities and definitions of sex. Most reported fear of encounters with disrespectful and uninformed providers and wanted “doctors [who] will be helpful and respectful.”

Youth verbalized a desire to feel affirmed by adult caregivers. One wished to hear from their parent, “I see and affirm that this is who you are and am grateful that we have this level of trust that you’re sharing this information with me. I am happy that you feel free to live life as your truest self. Please tell me more about your identity so I can understand it better. I’m gonna do some research as well so we can have clearer, better conversations about this. And most importantly, I love you.”

Participants identified a relationship between their parents’ level of support of their sexuality, gender identity, and/or sexual activity and the likelihood that they would receive appropriate sexual health information. Some were fearful that parents would find condoms, which would lead to an angry conversation about sex. Youth wanted parents to be open to discussing romantic relationships in a way that was not cisgender normative and heteronormative, but most reported experiences with “no room for the use of [transgender-friendly terms, such as] partner, significant other.” Other adult role models, such as a therapist or a transgender adult, were important. One participant asked their transgender role model “questions about hormones and [sexual health] things before [they] turn to [their] doctor.”

Participants routinely accessed educational resources and social support online. However, one participant noted, “Many teens aren’t equipped to determine which sources are reputable and which ones aren’t.” Another mentioned, “porn [pornography] was [their] biggest teacher,” and others agreed. Positively, one participant emphasized, “Community [transgender online community] has been essential to me becoming who I am and who I am becoming.”

This study highlights multiple approaches to improving transgender youth experiences with HIV prevention, including (1) providing transgender health education for providers to increase knowledge and skills in providing affirming care; (2) addressing barriers to services, such as lack of accessibility, stigma, and discrimination; and (3) expanding sexual health education to be inclusive of all gender identities, sexual orientations, and definitions of sex. Building partnerships between health care institutions and community organizations, including schools, is an important strategy to address youth desire for increased HIV prevention education, access to services, and creative ways to promote mentorship (role modeling).

Educational programs for providers and/or professionals who support transgender youth are needed. Programs should include education on health disparities, stigma and/or discrimination, and how microaggressions and macroaggressions (interpersonal and system level, respectively) affect health outcomes and health-seeking behaviors.^15,24–27  Programs should provide education on language and definitions used by sexual and gender minorities and ways to engage youth and ask questions about sex and sexual partners that are affirming. Lastly, programs should include sexually transmitted infection (STI) and HIV prevention strategies, including discussion of safer sexual behaviors, negotiation and consent, sexual and physical assault, condoms, lubrication, STI and HIV testing, human papillomavirus vaccination, and PrEP. The Food and Drug Administration approved PrEP use by adolescents at high risk for HIV in 2018.²⁸  However, participants noted that many providers did not know about PrEP and/or were unwilling to prescribe PrEP. Instead, participants reported learning about PrEP, as well as other HIV prevention strategies, from community spaces, dating apps, and pornography.

Many of this study’s findings are consistent with what is known about transgender adults. However, our results also offer insight into the unique role that parents, teachers, and school nurses have in the HIV prevention experiences of youth. Participants voiced the need for their parents and/or guardians to obtain skills and competence in providing affirmation and support. Providers, including school nurses, who have developed transgender competency can work with community partners to develop educational resource lists for youth and their parents and/or guardians. Similar to other reports,^24,29  this study highlighted a need for sexual health education to be inclusive of sexual and gender minorities. Participants described how the lack of inclusive education affected their ability to negotiate safer sexual behaviors with partners and communicate effectively with providers.

Creative, transgender-affirming ways to increase youth comfort, access, and knowledge about STI- and HIV preventive resources (including HIV testing) identified in this study include advertisements for services (including youth-friendly clinic operating hours and transportation options) at community events (eg, Pride Week) and online (eg, Facebook pages, social media apps, or dating apps). These efforts could increase access for youth who are unaware of services and/or not seeking services because of negative past experiences. Similarly, Steinke et al’s²⁴  qualitative report on perspectives of sexual education among sexual and gender minority youth also supports the development of digital ways to provide sexual health education that foster positive identity development, a sense of community and/or belonging, and appeal to diverse sexual, gender, and other intersecting identities held by youth.

Participants discussed important concerns associated with safety and low self-advocacy in dating, communication, and engaging in sexual activities, which increased their HIV risk. Other investigators have documented high rates of victimization (forced sex and physical dating violence)¹  as well as stigmatization and concerns for safety (in person and online) among transgender youth.²⁴  Education and resources related to safety, dating violence, sexual consent, and negotiation and advocacy skills for safer sexual behaviors, including condom use, are needed. Feeling unsafe and not being able to articulate sexual health needs are major barriers to HIV prevention.

Our study yielded rich data, providing valuable insight into transgender youth experiences. Over 3 days, we recruited and retained a national sample of understudied adolescents in a youth-friendly and effective manner. The convenience (ability to login and engage in online, asynchronous discussions at times that are convenient for youth and nondependent on time zones and school schedules, which are barriers with synchronous discussions) and privacy of online discussions facilitated participation. Participants were aware that the study was being conducted by researchers affiliated with Fenway Health, which is a known sexual- and gender-minority–friendly health center. This possibly could have an effect on youth willingness to participate and share openly, although we think many youth outside of Boston would not be familiar with Fenway Health.

Limitations included a necessity for computer and/or Internet access and exclusion of non–English-speaking youth (eg, Hispanic and Latino). Participants were predominantly white, non-Hispanic, and assigned female sex at birth. Recruiting youth of greater racial and/or ethnic diversity and youth assigned male sex at birth (a priority population for HIV prevention) remained challenging. Insights, specifically from adolescent transgender females of color, may differ from our findings. Future recruitment strategies would benefit from prolonged development of trusting relationships with transgender youth–serving organizations and key peer influencers (specifically transgender females and youth of color) as well as additional youth input for online advertisements and/or recruitment.³⁰  Lastly, we believe greater financial remuneration or small transgender-female–specific gifts (eg, makeup from transgender-popular brands) would increase participation and, potentially, diversity of participants.³⁰ 

It is important to elicit transgender youth experiences and perspectives related to HIV risk and preventive services. This study provided a greater understanding of barriers to and facilitators of youth obtaining HIV preventive services and sexual health education. Results will inform the development and testing of affirming, culturally competent, and youth-driven HIV prevention tools and educational resources for adults who provide health care and support services. Tools should include basic transgender education for providers and other youth-serving professionals; address barriers, including stigma and discrimination, to transgender youth access to services; and expand sexual health education to cover consent for sexual activity, physical and emotional safety, and self-advocacy and to be inclusive of all gender identities and sexual orientations.

app

application

LGBT

lesbian, gay, bisexual, and transgender

PrEP

preexposure prophylaxis

STI

sexually transmitted infection

YCAB

youth community advisory board