Towards Shared and Effective Self-Care: A User-Centric Framework for Enhancing HIV Prevention

Background: Despite a declining trend in Human immunodeficiency virus (HIV) prevalence across sub-Saharan Africa, specific vulnerable groups continue to be disproportionately impacted (29.9% for sex workers, 12.9% for gay men having sex with men (MSM) vs 5.9% for adults). In the face of this challenge, it is critical to tailor demand creation for prevention, in particular self-care, for maximum impact and cost-efficiency. This study seeks to provide a behavioral understanding towards HIV prevention that shape the efficacy of prevention strategies among priority populations (female sex workers, MSM and adolescent girls and young women) in southern and eastern Africa. Methods: This study involved a literature review of 110 articles, focusing on HIV prevention in priority populations, behavioral interventions, and policy priorities from governments and funders. Additionally, insights were gained from 11 in-depth interviews and a workshop with 10 experts at the AIDS Impact 2023 conference. Participants included behavioral researchers and program leaders from Global Fund, United States Agency for International Development (USAID), U.S. President's Emergency Plan for AIDS Relief (PEPFAR), Bill and Melinda Gates Foundation, FHI360, Population Services International and Genesis Analytics. A user-centric behavioral framework was devised to identify actionable drivers and barriers in HIV prevention during the consultation exercise. Results: The study highlights the importance of shared and effective self-care in enhancing HIV prevention, particularly in vulnerable groups. The behavioral framework integrates the decision-making contexts and the health ecosystem layers to inform research and demand strategy. Key findings include: (1) effective self-care is not the same as continuous use of Pre-exposure prophylaxis and therefore, programs and policies need to measure them differently; (2) users exercise choice through a combination of prevention products and focus on a few may be sub-optimal, and (3) perceived risk is transient and hence risk-based messaging lacks sustained relevance. Conclusion: Effective self-care strategies extend beyond overcoming access and availability issues. Examining the underlying factors causing the barriers is essential. The behavioral framework presented here suggests that: (a) Self-care is a shared responsibility between the user and healthcare system and (b) demand creation should be de-medicalised, away from products and towards meeting the needs and preferences of users.