Participation in HIV Behavioral Research: Unanticipated Benefits and Burdens.

Abstract

HIV behavioral research has provided an invaluable knowledge base for effective approaches to behavioral challenges along the HIV care cascade. Little attention has been paid to tracking unanticipated effects of research participation, whether negative or positive. We used qualitative methods to elicit impressions of unanticipated effects of participation in behavioral research. An instrument was developed and piloted to assess positive (emotional gains, practical gains, HIV prevention knowledge and skills gains) and negative (emotional stress, discomfort with research) unanticipated effects. Participants (N = 25) from five projects, including men who have sex with men, adults who use substances, and youth, reported multiple positive unanticipated effects (sexual and drug risk reduction, goal setting, improvements in self-esteem and mood, relationship gains, health care behavior gains, knowledge and introspection gains) and rare unanticipated negative effects. Developing a systematic tool of unanticipated positive and negative effects of participation in behavioral research is a crucial next step.