A qualitative exploratory study of injection drug users' participation in a long-term epidemiological study of HIV

An exploratory study was conducted with 15 current or former injecting drug users to gain an understanding of the motivations for and reactions to participating in ALIVE (AIDS Link to Intravenous Experiences), a longitudinal natural history study of HIV among urban drug users in Baltimore, Maryland. Semistructured qualitative interviews explored participants' perceptions of ALIVE and of its benefits and the factors that might influence accuracy of self-report. Participants described benefiting from the study in many tangible and intangible ways. ALIVE was the sole source of health care for many, as only a third of the participants had health insurance. Participants' biggest challenge in the ALIVE survey were questions related to sexuality, which were perceived as too personal or elicited shame. Results indicate the importance of qualitative research in understanding how and why people are motivated to participate in epidemiological studies and how these perceptions might relate to their responses in survey research.