Project coordination
Armauer Hansen Research Institute

Partners
McGill University
German Leprosy and TB Relief Association (GLRA)
Leprosy Mission International- Ethiopia
NLR - until No Leprosy Remains
College of Medicine and Health Sciences, Haramaya University

Aim: The project aims to explore how contextualised, modified training materials can contribute to the participation of persons affected by leprosy, lymphatic filariasis, and podoconiosis in decision-making, the effectiveness of NTD programmes, and the reduction of stigma.

Full project title:
Amplifying the Voices of Persons Affected by Leprosy, Lymphatic Filariasis, and Podoconiosis through Contextually Adapted Training Materials: A Participatory Approach to Reducing Stigma and Enhancing Participation in Neglected Tropical Disease Programmes in Ethiopia

Project summary:
Leprosy, podoconiosis, and lymphatic filariasis are neglected tropical diseases that can cause severe physical disability and social stigma, particularly in poor and underserved communities. Leprosy is often associated with disability and social exclusion. Similarly, podoconiosis disproportionately affects impoverished farming communities, while lymphatic filariasis can lead to stigmatizing conditions such as hydrocele in men and swelling of the legs. Despite significant global efforts to control these diseases, they continue to place a substantial burden on affected individuals and communities, particularly in endemic countries such as Ethiopia.

This study seeks to answer the question: How can contextually adapted training materials for people affected by leprosy, lymphatic filariasis, and podoconiosis improve visibility, reduce stigma, and enhance participation in NTD-related programmes in Ethiopia?

The study will use a Participatory Action Research (PAR) approach to develop and evaluate training materials tailored to the needs and experiences of people affected by these diseases. The research will begin with a needs assessment involving people affected by leprosy, lymphatic filariasis, and podoconiosis, as well as health workers and community leaders. This assessment will identify barriers to participation and explore the social determinants that influence health outcomes and experiences of stigma. The findings will help identify gaps and inform the adaptation of existing advocacy and leadership training materials to the local context.

Based on these findings, culturally and linguistically appropriate training materials will be developed. Their effectiveness will be assessed through pre- and post-implementation surveys, together with participant feedback, to evaluate changes in knowledge, participation, and experiences of stigma.

Six months after the intervention, a follow-up evaluation will assess the extent to which participants have taken on advocacy and leadership roles and examine longer-term outcomes related to empowerment, knowledge, participation, and stigma reduction.

The findings will be shared internationally to support efforts in other countries facing similar challenges related to neglected tropical diseases, disability, and stigma.