Status: Recently completed
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.
Support group members described:
At the programme level the study reported:
October 2019 – September 2021