Project coordination
Hope Rises International
Partners
Ghana National Leprosy Control Program
IDEA-Ghana
Leper’s Aid Initiative (Catholic NGO)
Aim: The primary research question of the project was: How can persons affected by leprosy support early case detection and DMDI in rural settings, specifically in the Upper West Region of Ghana?
Full project title:
The role of persons affected as agents of change in their community: leprosy peer mentors to support case detection, DMDI and stigma reduction.
Final project summary:
Leprosy continues to cause new infections and disability in Ghana, with an average of 267 new cases reported annually between 2017 and 2021. Most cases are still detected through passive case finding, meaning that individuals seek care only after noticing symptoms, often following long delays. This project explored whether people who had experienced leprosy and successfully completed treatment could take on a more active role within their communities by helping to identify and refer new cases, supporting newly diagnosed patients, and addressing the stigma associated with the disease.
The study was conducted in the Ashanti and Upper West Regions of Ghana between 2023 and 2026. It was led by Hope Rises International (formerly American Leprosy Missions) in partnership with the Ghana National Leprosy Control Programme, IDEA Ghana, the Leper's Aid Initiative, and the Father Campbell Foundation.
The project was implemented in four phases. During the first phase, interviews with 23 people affected by leprosy and 61 health workers revealed that an informal peer referral system already existed within communities. Notably, 91% of interviewed patients reported having referred someone with possible leprosy symptoms for care before any formal programme had been established.
In the second phase, researchers interviewed 30 patients and 22 peer mentors, assessed the mentors' knowledge of leprosy, and evaluated 61 health facilities to determine their readiness to receive referrals. The third phase brought together people affected by leprosy, health workers, programme focal persons, and partner organisations in a co-creation workshop held in July 2025. Together, they developed a community-based peer mentor model tailored to the local context.
The model was implemented during the fourth phase, when 22 trained peer mentors worked across six districts between August 2025 and March 2026. During this eight-month period, peer mentors identified 105 people with suspected leprosy. Of these, 41 individuals (39%) were laboratory-confirmed as having leprosy in districts where case detection had previously stalled.
The model proved particularly effective in reaching groups that had been underrepresented in the formal health system. Women accounted for 64% of suspected cases identified through peer mentors. Among confirmed cases, women had been living with symptoms for an average of two years before being identified—twice as long as men.
Peer mentors also demonstrated significant gains in knowledge during the project, with average scores increasing from 78.0% at baseline to 89.4% at the end of the study. A key feature of the model was the willingness of peer mentors to share their own experiences of leprosy. Twenty-one of the 22 mentors reported openly discussing their past illness with people they supported. Mentees frequently described these personal stories as the factor that convinced them to seek care. As one health worker observed, the peer mentor became “the bridge between us.”
The study demonstrated that a community-based peer mentor approach can support early case detection, reduce stigma, and create meaningful roles for people affected by leprosy within disease control efforts. The findings also highlight the potential value of lived experience in improving community engagement and encouraging timely access to care.
Future scale-up of the model will depend on several factors, including reliable drug supplies, structured compensation for peer mentors, and continued investment in stigma research and long-term follow-up.