Understanding the African American research experience (KAARE): Implications for HIV prevention

Despite recognition that the African American population is underrepresented in studies of health and mental health treatment and prevention efforts, few investigations have systematically examined barriers to African American research participation. Without their participation, treatment and prevention strategies designed to curtail the spread of HIV in their communities will be bound to achieve less than optimal outcomes. Based on the assumption that successful recruitment of African Americans requires knowledge of (a) their beliefs about research, (b) their perceptions of the research process and researchers, (c) their motivations to participate, and (d) the historical and social factors that may be the source of at least some ambivalence, the current study undertook semi-structured interviews with 157 African American, low-income mothers residing in a large urban community where they and their children were at high risk for HIV. Given the sensitive nature of the research topic, members of the community were trained to conduct the interviews. Qualitative and quantitative analyses of the interview content suggest that despite having been consented, many participants (a) are not aware of their rights under informed consent and (b) lack knowledge of how the research will be used. Despite this and the subtle suspicion of White researchers held by some, many decide to participate for altruistic reasons. The implications for recruitment of participants in general and African Americans in particular into HIV prevention studies are discussed as are the implications for service providers directly or indirectly involved in the development and delivery of these interventions.