Minority Adolescents' and Parents' Views about Pre-Exposure Prophylaxis (PrEP): The Deep Roots of Medical Mistrust

Background. Approximately 22% of new HIV diagnoses are represented among youth aged 13 to 24 years old. Only 10% of U.S. adolescents report ever getting an HIV test. Black and Latino(x) adolescents experience disproportionate rates of HIV infection. For decades, condom use has been the primary method for reducing HIV transmission among sexually active adolescents and adults. Recent biomedical preventions such as Pre-Exposure Prophylaxis (PrEP) also offer protection against transmission. PrEP uptake has been slow in communities most affected by the virus. In this study, we use preliminary findings to examine the effects of parent-child medical mistrust on biomedical HIV prevention uptake.

Methods. Utilizing an ecological systems framework our community-based study Who’s on Board uses a mixed methods approach (i.e., integration of qualitative and quantitative data) to identify adolescent and parent/guardian attitudes, beliefs, and receptivity towards adolescent PrEP uptake. Adolescent recruitment goal was 200 HIV-negative or status unknown aged 13-17 Black and Latino(x) adolescents who attend an adolescent medicine clinic in the Bronx and completed an online survey assessing sexual history and behaviors, interests and awareness of PrEP, and sociodemographic characteristics. 25 parents of adolescents participated in three separate focus groups to garner insight about attitudes, beliefs and receptivity to PrEP uptake. We used SPSS for quantitative analysis and NVivo qualitative software.

 Results. The study sample consisted of 47 Black (25.5%) and Latino(x) (74.5%) adolescents from lower income families. Mean age was 16 years old. 53.2% described gender as male and 2.1% transgender man. From self-described sexual orientation categories, 27.7% preferred not to say, 25.5% heterosexual, 19.1% other, and 17.0% bisexual.  

Adolescents. 53.2% had been tested for HIV and 2.2% thought they might be HIV positive but not medically confirmed. 18.2% had ever taken PrEP and 21.7% would definitely take PrEP. Questions about government involvement in the HIV/AIDS epidemic included: There is a cure for AIDS and the government is keeping it from the public, 47.8% reported “don’t know”; AIDS was created in a government laboratory, 63% reported “don’t know”; and The government promotes the use of condoms in order to limit the number of births of certain groups, 54.3% reported “don’t know”.

Parents. Parents of youth have strong feelings about the U.S. government involvement in the HIV/AIDS epidemic and other health issues disproportionately affecting underrepresented minority populations. Medical mistrust of the government and health care system were deeply rooted among parents. Parents voiced skepticism about the uptake of PrEP as a biomedical HIV prevention strategy and its targeted focus on minority populations. These belief systems are communicated to their children that they might be aware of the misleading information given by providers and promoted by the government.

 Implications. Minority adolescents and parents have reservations about PrEP. Unethical and unjust current and historical health care practices influence attitudes, beliefs and receptivity to PrEP uptake. Implications for practice include the medical community consciously engaging in trust-building within communities to assure persons of just and safe health practices. Further research on implementing restorative justice and trust in medicine is needed.