Participant Observation at a Youth HIV Conference, Rena Greifinger et al., Qualitative Social Work (2013)

This study sets forth the findings of participant observers at the One Love Project, a five-day conference for young people living with HIV and their allies from across the country. Observers – including the Founding Director of the One Love Project, a clinical psychologist and qualitative researcher, and two observers with experience in adolescent HIV disease – recorded notes during day-long observations of group sessions. Data reflected discussions on a wide array of topics, including support (or lack thereof) from peers, difficulties of disclosure, familial and romantic relationships, and adherence to medication. For many of the youth, the conference was their first opportunity to connect with and receive support from other young people living with HIV.

Based on conference observations, the authors provided several recommendations for other groups working with and developing programs for HIV affected youth: program design should be youth-led and peer-based; practitioners should be cognizant of the complexities around disclosure, stigma, and trust and self-esteem within interpersonal relationships; and messaging around adherence should be shifted away from the 'do it because it is good for you' paradigm and towards discussions of how adherence may affect young people's peers and sexual partners. The authors emphasize that the meaningful, direct input of HIV affected youth is crucial to designing supportive programming.