Online Program

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

Sunday, November 1, 2015

Akilah Benton, MPH, AIDS Partnership Michigan, Detroit, MI
Clarence Peeples, BA, AIDS Partnership Michigan, Detroit, MI
Jennifer Konwaik, BA, AIDS Partnership Michigan, Detroit, MI
Ari Hampton, Wayne State University, The Horizons Project, Detroit, MI
Chunnika Hodges, AIDS Partnership Michigan, Detroit, MI
Lisa Taton-Murphy, BSW, AIDS Partnership Michigan, Detroit, MI
Josè Alvarez, OLHSA, Pontiac, MI
Laurel Sprague, MS, Global Network of People Living with HIV- North America, Washington D.C., DC
Emily Pingel, MPH, Center for Sexuality and Health Disparities (SexLab), University of Michigan School of Public Health, Ann Arbor, MI
Jimena Loveluck, MSW, President/CEO, HIV/AIDS Resource Center, Ypsilanti, MI
William VanHemert, MSW, AIDS Partnership Michigan, Detroit, MI
Jose A. Bauermeister, MPH, PhD, Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI

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.


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.


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.


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.

Learning Areas:

Advocacy for health and health education
Program planning
Public health or related research

Learning Objectives:
Discuss the benefit of having PLHIV leadership for community-based research Explain how to use empirical data to inform advocacy and policy chance around stigma for PLHIV Describe the study team’s initial outreach methods to garner diverse support from the metropolitan community

Keyword(s): Community-Based Partnership & Collaboration, HIV/AIDS

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a skilled public health professional with over 5 years of a diverse background of practical and research experiences working with people living with HIV. Currently, I am the Community Mobilization and Research Manager for AIDS Partnership Michigan.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 2030.0: Community-Based HIV Practice