Operationalising people-centred community-led self-help groups to improve mental health and wellbeing for people with skin-neglected tropical diseases : a case study from Kasai, DRC

Introduction: People affected by skin-neglected tropical diseases (NTDs) may experience stigma and discrimination due to visible physical impairments, negatively affecting their mental health, wellbeing, and quality of life. To address these challenges, our partnership used a community-based participatory research (CBPR) approach to co-develop, test, and evaluate a community-led intervention that included self-help groups. In this article, we critically evaluate the intervention implementation process, to provide clear implementation considerations when operationalising self-help groups for NTDs, a missing component of the evidence base. 

Method: Photovoice activities with self-help group members and leaders explored the experience of peer-support amongst people affected by skin NTDs. Additional data included reports from self-help group meetings and reflective sessions, in-depth interviews with group members, and key-informant interviews with stakeholders. Data were analysed using framework analysis using NVivo 12. Results: Five interrelated elements were identified as central to people-centred community-led self-help groups for people affected by skin NTDs in Kasai, DRC: 1) relevant and actionable needs-based activities; 2) a shared purpose amongst group members; 3) inclusivity and equity in roles, responsibilities, and benefits; 4) committed leadership; and 5) continuous capacity strengthening and support from research and implementing partners. 

Conclusion: This is one of the first studies presenting insights from people affected by skin NTDs on how community-led self-help groups can be operationalised in a people-centred way. The findings highlight key implementation considerations that may inform the design and delivery of self-help group interventions in low-resource settings, potentially supporting sustainability and user-led engagement.