Visualizing stigma and HIV service engagement: a participatory approach using causal loop diagrams

HIV stigma continues to undermine efforts to reduce HIV incidence and improve care outcomes in the United States, particularly among communities disproportionately impacted by the epidemic. While stigma is a known barrier to care, how it operates across HIV prevention, testing, and treatment remains difficult to characterize within complex service systems. This study employed a participatory systems science approach to map these dynamics across the HIV care continuum.

We conducted three virtual group model building sessions (10-15 participants per session) with stakeholders from city and state health departments and community-based organizations across Ending the HIV Epidemic priority jurisdictions to develop causal loop diagrams (CLDs). Literature-informed base diagrams for HIV prevention, testing, and treatment were iteratively expanded during facilitated discussions to identify key factors, causal relationships, and feedback loops. Diagrams were then refined and validated with academic experts; feedback loops were synthesized into core system domains and integrated into a comprehensive CLD.

The resulting CLDs highlighted interrelated feedback loops across three key domains: (1) personal health attitudes and care navigation, (2) provision of quality services, and (3) community influences on HIV-related health and care. Anticipated and internalized stigma were found to weaken social support and personal resilience, while enacted stigma from providers reduced care quality and compromised health data. Community-level stigma was described as highly context-dependent - reinforced by social isolation or reduced through visibility and inclusive norms in others. Overall, stigma was traced in pathways across individual, social, and structural subsystems.

Participatory systems methods can help visualize how socio-behavioral determinants, such as HIV stigma, dynamically shape engagement across HIV prevention, testing, and treatment. CLDs offer an intuitive framework for identifying leverage points for stigma mitigation, which can inform the design of multi-level interventions to support progress towards EHE goals.

Clinical trial number: not applicable.