The primary research question is: how can persons affected by leprosy support early case detection and DMDI in rural settings, specifically in the Upper West Region of Ghana?

The role of persons affected as agents of change in their community: leprosy peer mentors to support case detection, DMDI and stigma reduction.

Project coordination

• American Leprosy Missions

Partners

Project summary

The primary research question for this study will explore how individuals who have previously been diagnosed with leprosy and effectively treated can support early case detection for new cases and support disease management, disability, and social inclusion.

This proposed study is the result of findings from an on-going study where the research team identified that these individuals are already serving an organic role as peer-mentors and supporting case detection, referral, and health education. Based on these initial findings, there is a need to learn more about what is already happening with peer-mentors at the community level and assess ways in which persons affected could be encouraged and supported to continue to serve this role as agents of change in their community and support overall leprosy targets and program objectives.

The role of peer-mentors to support positive health behaviors has been documented in other disease settings, such as HIV and maternal and child health. Furthermore, the role of peer mentors has been well documented in terms of stigma reduction for leprosy, but not necessarily in terms of case search and disease management. Globally, across the leprosy community, there is a focus on cost-effective cases search, active engagement of personas affected, activities to support early case detection to prevent leprosy related disability, and an overall priority on stigma reduction.

Secondary research questions of this study include understanding what may already be happening in communities in terms of peer-engagement and what a realistic model to improve peer mentoring could look like. The research team will also assess how a peer-based model for case search may impact individual empowerment and well-being as well as overall stigma within the community.

The study will be implemented through four phases. The first phase will involve interviews with existing mentors and health workers to understand the current role persons affected play in case search, referral, disease management and inclusion. The goal is to identify a number of individuals who are already serving a mentor role and invite them to participate in the subsequent phases of the study. Phase 2 will involve more in-depth interviews with both mentors and new cases to learn more about their experience and perceptions, as well as successful and challenges. During Phase 2, the research team will also conduct a health facility assessment to understand the capacity of facilities to receive referred patients. Based on the findings from Phase 1 and 2, phase 3 will involve planning workshops to design an optimal model for community-based peer mentoring and case search. Phase 4 will involve a pilot implementation of the recommended model, including an evaluation and dissemination of the success and lessons learned.

Results from this study will be valuable to a number of stakeholders and can be used to test similar approaches in other settings.

Co-financer: St. Francis’ Leprosy Guild