This study will investigate motivations underlying the decisions of underserved minority individuals to participate in HIV/AIDS clinical research. From an ethical perspective, the study of decisions to take part in research often focuses on participant knowledge and understanding within a philosophy-based framework of informed consent. This study explores the use of a behavioral framework to examine decision making in this vulnerable population. A greater understanding of motivations surrounding decision making is needed because minority populations are disproportionately affected by HIV/AIDS, yet are under-represented in HIV/AIDS clinical research (Gifford et al., 2002; Djomand et al., 2005; Sullivan et al., 2007). This study will build on a previous study of motivations for participating in hypothetical research among underserved African American drug users with or at risk for HIV/AIDS. The specific aims are 1) to elicit and describe perceptions of severity of illness on decisions to participate; 2) to elicit and describe benefits of participating in clinical research as perceived by participants; 3) to elicit and describe burdens (inconveniences, discomfort, risk of harm) of participating in clinical research; 4) to elicit and describe 'cues' or 'triggers' for decisions; and 5) to elicit and describe "self-efficacy" in research decisions—defined in this proposed study as a belief in one's ability to control the research process to one's benefit.
The study design is mixed method, with quantitative and qualitative components. The target population is 250 HIV positive Caucasian, African American and Hispanic participants who receive their healthcare at an urban clinic specializing in HIV/AIDS treatment. The quantitative component will use structured scales and survey questions to measure motivating influences in 200 individuals with HIV. Relationships among variables will be identified in studies representing both high and low risk. The qualitative component will elicit information from 50 participants, using semi-structured, in-depth interviews. Data will be triangulated to produce a complete picture of decisions to participate. |