The purpose of this study is to 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 African American research participants who receive their health care at an urban clinic specializing in the treatment of HIV/AIDS. The quantitative component will use structured scales and survey questions to measure motivating influences in 200 clinical research participants. Relationships among variables will be identified for studies representing both high and low risk. The qualitative component will elicit information from 50 participants, using semi-structured, indepth interviews. Data will be triangulated to produce a complete picture of decisions to participate. Understanding decisions to take part in HIV/AIDS research is essential to enhance individuals' access to the benefits of clinical research. The public's health is dependent on high-quality health care informed by high-quality research that will provide the best evidence for guiding clinical treatment, disease prevention and health policy. High-quality research and public support for research are aided by the recruitment of participants who are informed, motivated and representative of the target population. Knowledge of participants' motivations influencing their participation in research is critical for determining the best methods for investigators to enhance subjects' participation while maintaining optimal rigor in both research methods and human subject protections.
This proposed research will use mixed methods to study underserved HIV positive African Americans' decisions to participate in HIV/AIDS-related clinical research. Motivations underlying decisions to participate will be elicited through the conduct of 200 structured surveys and 50in-depth interviews.
|Slomka, Jacquelyn; Kypriotakis, Georgios; Atkinson, John et al. (2012) Factors associated with past research participation among low-income persons living with HIV. AIDS Patient Care STDS 26:496-505|
|Slomka, Jacquelyn; Ratliff, Eric A; McCurdy, Sheryl A et al. (2008) Decisions to participate in research: views of underserved minority drug users with or at risk for HIV. AIDS Care 20:1224-32|
|Slomka, Jacquelyn; Ratliff, Eric A; McCurdy, Sheryl et al. (2008) Perceptions of risk in research participation among underserved minority drug users. Subst Use Misuse 43:1640-52|