Perceptions of Barriers and Facilitators to Participation in Clinical Trials in HIV-Positive Latinas: A Pilot Study

Abstract

Women of color comprise a growing proportion of U.S. HIV/AIDS cases and are poorly represented in HIV/AIDS clinical trials. Improved understanding of reasons for low Latina representation in HIV/AIDS clinical trials is needed to promote participation and improve study generalizability. We studied barriers and facilitators to HIV/AIDS trial participation in HIV-positive Latinas in the U.S.-Mexico border region. Forty HIV-positive Latinas, 10 HIV/AIDS service providers, and 4 HIV/AIDS trial recruiters were consented and received interviewer-administered structured surveys. Fisher's exact tests were used to explore differences between women who had and who had not participated in clinical trials. Latinas were Mexican born (70%), preferred health information in Spanish (62.5%), had a mean age of 38 years (range 21-60), had a household income < or = 15,000 dollars/year (62.5%), crossed the border at least once/month (45%), and reported residing in Mexico (15%). We found no significant differences between women who participated in a clinical trial (60%) and those who had not (40%) across language, age, education, and border crossing (p > 0.05). Sixty-three percent of Latinas perceived individual-level barriers (e.g., fear, shame, and stigma), and 10% mentioned system-level barriers (e.g., lack of transportation or language-appropriate services); 70% of providers mentioned system barriers. HIV stigma was not reported as a barrier by providers. The role of stigma in recruitment of HIV-positive Latinas into clinical trials and differences in perceptions of barriers between Latina participants and service providers merit further exploration. Improved understanding of individual and system barriers to clinical trials participation in a binational context is warranted.