'He who knows it, feels it.' Stepping stones towards fulfilling a peer-advocate role among people with chronic stigmatising conditions in Liberia.

Abstract

Background: People affected by skin neglected tropical diseases (NTDs) are often stigmatised, experiencing discrimination in consequence of their condition. Peer advocates can help progress a person-centred agenda for people affected by NTDs, however, evidence gaps in the steps to becoming an advocate persist.

Methods: We wanted to understand the steps towards a peer advocacy role for skin NTDs. We used the participatory Stepping Stones method to identify steps on the journey to becoming an advocate with 48 participants, followed by three in-depth life histories with peer advocates for other stigmatising chronic conditions (e.g. disability, mental health, Ebola survivors).

Results: We found study participants frequently experience stigma and discrimination in consequence of their condition. The peer advocate role includes awareness raising and advocacy and providing mutual peer support. Among peer advocates, personal acceptance of their condition, vocational training and family support are important steps along the pathway to becoming a peer advocate. Outcomes of the role include personal determination and increased confidence for peer advocates, provision of help and support for others with similar conditions and broader change in understanding, attitudes and policy within the community and country.

Conclusions: We find that when appropriately enabled, peer advocates can themselves be empowered and play a key role in person-centred care.