• To establish a community-based support system to improve the health and wellbeing of people affected by stigmatising skin diseases and their caregivers in Kaduna and Kwara State, Nigeria

The study addressed the distress caused by neglected tropical diseases (NTDs) to affected people and their caregivers because of direct impact, stigma and discrimination. The study partnered with affected people, caregivers, and programme implementers to support the co-design and implementation of community-based support groups, focusing on both physical and psychosocial wellbeing.

The study was split into four phases: Phase 1 (Reflect) sought to understand both the experiences of affected people and caregivers and existing/possible support structures. Phase 2 (Plan) involved collaborative action planning meetings to co-design community-based support groups. Phase 3 (Act) saw the implementation of support group intervention over five months. Phase 4 (Observe) involved a process and outcome evaluation.

Using community-based participatory research (CBPR), affected people and caregivers were actively involved as co-researchers in all stages of the research process. Photovoice was used as a creative participatory method, to explore lived experiences of stigma, psychological wellbeing and support.

Kaduna and Kwara states were selected as study sites because of their endemicity for two of more NTDs affecting the skin, their geographic variance and established case detection processes.

Key findings

Support group members described:

• strengthened social connection and stigma reduction
• improved physical and mental wellbeing, including improved self esteem
• and a strengthened skill base.

At the programme level the study reported:

• improved referral
• improved ability of local government area coordinators to identify needs and assist promptly
• and growth in membership and indication of sustainability.

Policy and practice implications

• Anticipated integration into Federal Ministry of Health policy (under development) for care and support of people living with stigmatising skin diseases
• Anticipated adoption of the community-based support intervention as a standard practice for skin NTDs

• Read the project summary
• Read the manual ‘Establishing community-led support groups for people affected by skin NTDs’
• Kaduna skin stories – photovoice booklet
• Kwara skin stories – photovoice booklet
• Read ‘Evaluating the impact of community-led support groups in Kwara and Kaduna’
• Watch a presentation of the findings (at minute 40 of the ‘Lessons from COUNTDOWN’ webinar, 28 September 2021)