“Nothing about us without us”: The importance of PLHIV leadership in community-based research projects

background

The Global Network of People Living with HIV has implemented The Stigma Index in over forty-five countries, excluding the United States. A coalition led by people living with HIV (PLHIV) and their allies piloted The Stigma Index in the Detroit Area.  A primary goal of implementation was integrating PLHIV into each phase of the research process, including data collection, analyses, and advocacy.

methods

The project team recruited five PLHIV interviewers from a diversity of metropolitan communities. The interviewers were trained to distinguish various types of stigma, to consider the role each person plays in improving quality of life for PLHIV, to employ basic interview skills and create a supportive interview environment. Based on interviewers’ networks and affiliations, key populations were assigned (e.g., MSM, homeless, IDU, sex workers) to recruit and interview.

results

The application of participatory-action research by PLHIV facilitated the recruitment of hard-to-reach populations. Participants (n=70 PLHIV) were recruited and interviewed over 4 months. A major challenge was the pre-screening process for interviewees, in which multiple contact people were required, ultimately creating confusion.  A modified system was therefore implemented for later recruitment. The PLHIV leaders determined domains of interest for analysis that were communicated to the research team who then analyzed and presented the data.

 conclusions

Having diverse well-respected interviewers was a strong advantage for this study. We highlight key lessons learned and discuss the importance of engaging PLHIV in stigma-related research and advocacy. This framework will be used to disseminate the Stigma Index in other continental states.