Minority HIV Patients’ Perceptions of Barriers and Facilitators to Participation in Clinical Research

Caitlin      Wolak; Sarah      B. Bass; Ellen      Tedaldi; Mary      Vandenburg-Wolf; Caitlin      Rohrer

Abstract

HIV clinical trials play an essential role in producing new HIV medications, developing guidelines for the appropriate timing of antiretroviral treatment, and evaluating behavioral interventions that aim to increase the quality of life of HIV-infected individuals. It is critical to have participation from all demographic groups, yet minorities are disproportionately underrepresented in HIV clinical research. This study assessed HIV+ minority patient perceptions of the barriers and benefits of participating in HIV clinical trials in an HIV clinic of a large, urban teaching hospital. Twentysix, age-eligible (18-65), minority patients were recruited and participated in three focus groups, separated by clinical research participation status. Results suggest differences in perceptions between those who had and had not participated. Facilitators for those who had participated included doctor recommendation and receiving extra medical attention. Those who had not participated indicated disclosure of HIV status, fear of losing the stability that their current medication regimen provided, distrust of the medical system and doubt about the origin of HIV were major deterrents of participation. Both groups indicated a need to better educate minority patients about what clinical research is and its benefits. To increase minority participation, it is vital to examine the perceptions of minority HIV-infected patients and develop culturally competent, developmentally appropriate messages that address these barriers.

Keywords: HIV/AIDS clinical research, minority clinical trial participation, patient perceptions of clinical research, medication, participate, barrier, information, experimentation, status, minority