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 limit the attainment of World Health Organisation (WHO) 2030 roadmap progress. Evidence on stigma related to skin NTDs pertains largely to leprosy, and experiences focus on the micro level, with limited consideration of the broader meso and macro social and structural conditions underpinning experiences of stigma. This study sought to explore experiences of stigma and violence among persons affected by skin NTDs in Liberia, within the context of an integrated skin NTD programme, including the application of intersectionality theory, considering how experiences change over time and in in relation to gender and condition, and making evidence-based recommendations. 

METHODS: This participatory action research study used participatory methods (e.g., photovoice) and worked with persons affected as co-researchers. We drew on longitudinal qualitative data (n=649 participants) from three distinct timepoints during 2019-2023 with respondents from across the health system, prioritising perspectives of persons affected. We conducted gendered thematic framework analysis, guided by a conceptual framework, drawing on the WHO violence typology, stigma forms and the social ecological model. 

FINDINGS AND DISCUSSION: Stigma and violence, commonly attributed to myths and misconceptions, are hindering participation and inclusion. Stigma and violence seem to have reduced, however, emotional violence and internalised stigma remain prevalent. There has been a reported decline in stigmatising attitudes held by formal health workers, but some informal providers (traditional and faith healers) continue to perpetuate harmful myths. Harmful myths and gender shape the manifestation and determinants of violence, often mirroring gender norms and converging with other forms of inequalities, with women disproportionately impacted. Leprosy was associated with the most distressing and de-humanising accounts. The relationship between skin NTDs, stigma and violence is complex and multifaceted - we propose a framework to strengthen understanding. Addressing stigma and violence is paramount in the delivery of equitable, person-centred care, with implications beyond NTD programmes. More evidence is needed to deliver tailored, gender transformative interventions that engage informal providers and community-based groups (CBGs).