Rural perceptions, barriers, and facilitators to rural minority participation in clinical trials

Minorities in rural communities are disproportionately affected by HIV/AIDS but are underrepresented in HIV/AIDS trials. We present perceptions of HIV/AIDS research, perceived barriers and facilitators for participation identified by persons living with HIV/AIDS (PLWHA), service providers, community leaders, and a Community Advisory Board (CAB).

We conducted 35 individual interviews with PLWHA (30 English, 5 Spanish), 11 focus groups with community leaders and service providers (10 English, 1 Spanish), and supplemented these data with 5 Community Advisory Board (CAB) meetings. The CAB is comprised of leaders in the specified groups. Audio-taped and transcribed sessions were analyzed in a back/forth approach between discovery and verification of findings, and triangulated between sets of respondents.

Positives of HIV/AIDS research and HIV/AIDS clinical trials included vaccine development, opportunities for education, altruism, and possibilities of finding a cure. Negatives included lack of opportunities to participate, fear of placebos, being “used” as a guinea pig, negative institutional affiliations, and distrust of HIV/AIDS statistics and research protocols. Facilitators included access to HIV/AIDS medications, health screenings, and other resources like support groups and case management. Barriers to participation included lack of monetary incentives, lack of coordination with other health services, invasive procedures, conflicts with employment, lack of transportation, side effects, impersonal treatment by study staff, and discontinuation of services after the trial.

Historical associations of minority communities with HIV/AIDS research and concepts of clinical trials influence participation. Understanding how communities think about research, investigators can tailor protocols to fit community expectations, enhance acceptability, and increase minority participation.