Facilitators and Barriers to Participation in PrEP HIV Prevention Trials Involving Transgender Male and Female Adolescents and Emerging Adults

Abstract

Despite the disproportionate burden of HIV facing transgender youth, they continue to be under-represented in studies designed to provide an empirical basis for pre-exposure prophylaxis (PrEP) programs that can meet the unique needs of this population. This study examined facilitators and barriers to participation in a PrEP adherence study. Ninety transgender male (TM) and 60 transgender female (TF) 14 – 21 year olds attracted to cisgender male sexual partners completed an online survey to examine (a) gender identity, age and family disclosure; (b) sexual experience, HIV/STI testing history and perceptions of HIV risk; (c) prior health services and (d) perceived PrEP research risks and benefits (e) and the relationship of these factors to the likelihood of study participation. Approximately 50% were likely to participate in the PrEP study. Participation facilitators included prior sexual and health service experiences (i.e. number of sexual partners, STI testing history, comfort discussing sexual orientation and HIV protection with health providers) and study access to PrEP and health services (i.e. daily HIV protection, not having to rely on a partner for protection, regular health check ups). Participation barriers included lack of concern about HIV, potential medication side effects, the logistics of quarterly meetings, remembering to take PrEP daily and reluctance to discuss gender identity with study staff. Requiring guardian consent was a participation barrier for youth under 18. Results suggest that successful recruitment and retention of transgender youth in PrEP prevention studies warrant protocols designed to address youth's underestimation of HIV risk, concerns regarding medical risk and study logistics, and their need for gender and sexual orientation affirming health services.

Patient–Provider Communication Barriers and Facilitators to HIV and STI Preventive Services for Adolescent MSM

“…Although this concern was particularly salient among youth who were not out to parents, our data indicate that providers should not conclude that parents who are aware of their son’s sexual orientation identity are accepting of the patient’s sexual orientation or behaviors nor that youth who are out would be unconcerned about their physician sharing such information with parents. These results contribute to a limited but growing empirical literature on the complex relationship between parental support and health among sexual minority adolescents 382939403541 . While some research suggests that parental support for youth who disclosed their sexual orientation is associated with better health results, 4243 other research suggests that parental monitoring of and communication about same-sex sexual activity may actually be associated with increased sexual risk behaviors 44 .…”

“…Eighteen items examining participant attitudes and experiences with sexual health care services were developed and refined from our items included in prior online focus group and survey on healthcare experiences among bisexual female adolescents and attitudes toward HIV prevention research among adolescent and young adult MSM and transgender females 21,29,30 , review by a youth advisory council, and online piloting with a sample of 30 AMSM. All questions were introduced as follows: “The following questions ask about your experiences as an LGBTQ person receiving services from medical health care providers.…”

‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA

“…TW emphasised the need for transcompetent research environment, consistent with prior research 7–9 21. Transgender people often ‘scan for safety’ meaning look for cues that indicate safety and competency to them.…”

“…TW perceived a lack of transparency and clarity in communication from researchers which heightened community mistrust. Non-transparency was mentioned in relation to defining study eligibility and substantiates previous research 7–9 21. Presenting information about study inclusion and exclusion criteria in a clear manner that is respectful is crucial for building trust.…”

Assessing Knowledge of HIV Vaccines and Biomedical Prevention Methods Among Transgender Women in the New York City Tri-State Area

“…[10][11][12][13][14] Moreover, very limited data exist on the barriers and facilitators to knowledge of and participation in prevention studies and only one addresses participation in preventive HIV vaccine trials. [15][16][17][18] To address these gaps, we conducted a series of focus groups among transgender women in the New York City tri-state area (NY, NJ, and CT) to evaluate knowledge of HIV prevention and to assess the barriers and facilitators to participation in HIV vaccine clinical trials among HIV-negative transgender women. The participants also advised on the development of community engagement materials that are inclusive of the transgender community.…”