Eliciting community perspectives on research with older adults living with HIV through focus groups

Approximately half of all people living with HIV in the US are age 50 and older. Existing research highlights the health challenges of these individuals, but little work has focused on gathering input about concerns in participating in HIV and aging research. Prior to designing a prospective cohort study on HIV and aging, we elicited feedback from potential participants on general attitudes toward participation in a prospective HIV cohort study, and perspectives on important research topics relevant to older adults living with HIV. Three qualitative focus groups were formed. Three focus groups (5–7 participants each; N = 18) were held with older adults living with HIV. All discussions were audiorecorded and transcribed. Transcripts were analyzed using content analysis. Participants emphasized the importance of data confidentiality, shared concerns about study biases arising from sponsored research, and suggested that conflicts of interest should be independently assessed by “representative” boards made of community members. They urged researchers to be mindful of research “burnout,” because many people with HIV participate in multiple research studies. A number of priority research areas emerged, including the gap in provision of end-of-life services. Many older adults with HIV are knowledgeable about the research process and offer valuable insights to researchers. Addressing participant concerns can facilitate inclusion and enhance HIV research success.