Experiences of stigma and violence among persons affected by skin neglected tropical diseases (NTDs): longitudinal analysis from an integrated intervention in Liberia

Background Persons affected by skin neglected tropical diseases (skin NTDs) commonly face stigma and violence, which perpetuates social exclusion, mental health issues, poverty and impedes health-seeking behaviour. Thus, stigma and violence towards persons affected by skin NTDs risks World Health Organisation (WHO) 2030 roadmap progress. Liberia is among the first countries to launch an integrated skin NTD programme; and through REDRESS (Reducing the Burden of Severe Stigmatising Skin Diseases), has co-developed and evaluated an enhanced integrated skin NTDs case management programme, which includes stigma reducing components. This study sought to address existing evidence gaps, by exploring experiences of stigma and violence among persons affected by skin NTDs, including how their experiences change over time; in relation to gender and condition, and making evidence-based recommendations. Methods This study used a participatory action research approach, which used participatory methods (e.g., photovoice) and worked with persons affected as co-researchers. We drew on longitudinal qualitative data (n = 207) from three distinct timepoints during 2019–2023 with respondents from across the health system, with data from the perspective of persons affected prioritised. We conducted thematic framework analysis, and applied gender analysis, building on our conceptual stigma and violence framework. Findings and discussion Stigma and violence, commonly attributed to myths and misconceptions, are hindering participation and inclusion. Stigma and violence have qualitatively reduced, however, emotional violence across all levels and internalised stigma remain prevalent. There has been a decline in stigmatising attitudes held by formal health workers, but some informal providers (traditional and faith healers) continue to perpetuate harmful myths. Gender shapes the manifestation and determinants of violence, often mirroring gender norms, with women disproportionately impacted. Leprosy was associated with the most distressing accounts, with persons affected feeling stripped of their identities as humans.