Tensions in empowerment- or community-based HIV prevention interventions: lessons learned from ETOILE,a collaborative France–US self-study project

Abstract

In most high-income countries, human immunodeficiency virus (HIV) has concentrated among minoritized, discriminated against, or otherwise marginalized communities, such as queer people, people who migrated, people who exchange sex and/or use drugs, poor people and people of color. Suboptimal prevention and treatment uptake has led to the implementation of community-based and/or participatory research integrating ‘empowerment’ approaches in an effort to reach marginalized groups in high-income countries. Here we present results of a cross-national examination of how national contexts influence implementation of empowerment-based HIV prevention research projects in the United States (US) and France. ETOILE was a qualitative, self-reflective study collaboration conducted between 2019 and 2022. Three study teams (two from the US and one from France) engaged in self-reflective focus groups and intervisitations where both HIV prevention scientists and community-based organization partners discussed the following topics: HIV and community-based research landscapes, the notion of empowerment in traditional research contexts, within-project tensions around hierarchies/power, positionality and racial representation, and economic resources. We applied a grounded analytic approach to identify key emergent themes. The ability to communicate around structural racism differed across study teams; the French team had greater difficulty managing within-project tensions, reflecting the national context and history of community-based research. Whether and how epidemiological data is broken down (or not) by ‘race,’ ethnicity, and social class shape both research and popular understandings of HIV epidemics. The roles of community-based organization members and Black researchers in accessing communities and vouching for research is particularly challenging. Representation of Black researchers on study teams can critically influence research project implementation. We found that national contexts matter. We identified recommendations for conducting community-based research based on empowerment and participatory approaches in disempowering contexts.