Sightsavers Reports

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

Status: Recently completed

Main Objectives

This study aimed 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.

Summary

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 persons, caregivers, and programme implementers to support the co-design and implementation of community-based support groups, focusing on both physical and psycho-social wellbeing.

The study was split into four phases: Phase 1 (REFLECT) sought to understand both the experiences of affected persons 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 5 months. Phase 4 (OBSERVE) involved a process and outcome evaluation.

Using Community Based Participatory Research (CBPR), affected persons 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 well-being – 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

Main Contact

Tosin Adekeye
Team Lead
Sightsavers
[email protected]

Partners

Liverpool School of Tropical Medicine
Federal Ministry of Health, Nigeria
State Ministry of Health (Kaduna & Kwara)

Funder

Duration

October 2019 – September 2021

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