From initial awareness to sustained involvement: using social and behavioral stage models to better understand engagement in HIV cure efforts in the Netherlands, France, Australia, and sub-saharan Africa

Abstract

HIV remains a persistent global health challenge, emphasizing the urgent need for an effective cure. Meaningful engagement of affected communities is essential for advancing HIV cure efforts. Using stage theories of behavior change, this paper investigated engagement as a dynamic process. Engagement was highlighted with five interconnected stages: awareness, perceived relevance, decision-making, participation, and sustained involvement. These stages were used to understand how individuals and communities engage with HIV cure efforts across diverse contexts. Drawing predominantly, but not exclusively, on our own work in the Netherlands, France, Australia, and plans for work in Sub-Saharan Africa, we identified common patterns and local variations in engagement. Previous research underscored the importance of tailoring engagement strategies to lived experiences and sociohistorical contexts, moving beyond one-way information sharing to foster deeper, more meaningful involvement and engagement. Applying social and behavioral stage models in further interdisciplinary research may help pinpoint key opportunities for intervention and promote sustainable engagement with affected communities. Thus, this structured lens of engagement holds potential to advance the ethical and effective development of HIV cure efforts, ensuring that diverse perspectives shape its future trajectory.