Understanding Willingness to Participate in HIV Biomedical Research: A Mixed Methods Investigation

Biomedical research often enrolls people living with HIV (PLWH) receiving effective treatment to complete invasive procedures. This mixed methods study characterized determinants of willingness to undergo specific biomedical procedures among PLWH. In 2017, 61 participants (77% Black) from Miami completed a quantitative assessment examining willingness to participate. A subset of 19 participants completed an in-depth qualitative interview. Across all procedures, there was greater willingness to participate if asked by a primary care provider and if experimental results were shared. However, half of participants reported that they would experience undue influence (i.e., excessive persuasion) to participate from their primary care provider. In thematic analyses, altruism and personal benefit were identified as facilitators while medication changes, confidentiality, and perceived stigma were identified as barriers to participation in HIV biomedical research. Addressing participants’ expectations and mitigating potential undue influence from primary care providers could optimize the ethical conduct of HIV biomedical studies.