Case study: People with disabilities as co-researchers in Liberia

The aim of the Redress project, run by the Liverpool School of Tropical Medicine, was to improve care, and reduce stigma, for those affected by severe stigmatising skin diseases.

It employed a participatory action research approach in its design, development, implementation and evaluation.

The research used people-centred approaches and, for example, trained and employed people with lived experience of skin-related neglected tropical diseases (NTDs), alongside community health service staff, as co-researchers. It used mixed methods to help with the planning, design and implementation.

Findings that fed into the stigma reduction design included:

• Health staff lacked knowledge and motivation, and held stigmatising attitudes toward people affected by NTDs
• There were significantly higher levels of mental health conditions (anxiety and depression) among people with NTDs, and particularly high amongst women
• An assessment of power dynamics helped the team develop a more effective community engagement strategy to address social stigma. For example, understanding the leadership structures in the affected communities, and what spaces people have to participate and be heard
• During the research process, the co-researchers supported others with the same condition, which helped them to feel valued, and supported treatment adherence, helping to address internalised stigma as part of the process