Background
Leprosy reactions (LR) are serious complications of leprosy that can cause nerve damage, disability, and long-term pain. Although treatments exist, they often comes with adverse effects — such as skin problems, diabetes, tuberculosis, mental health issues, and in severe cases, even death. Reactions can occur before, during, or even after completing multi-drug therapy. This makes them a constant source of stress that affects not only health but also quality of life and economic opportunities.
While several studies have aimed to improve the management of LR, few have taken a truly participatory and qualitative approach — actively involving people who experience LR. In 2018, through consultations with people affected by LR in Indonesia and India, the project identified an urgent need for stronger patient support systems. The affected individuals, health professionals and other involved stakeholders suggested creating a patient forum using digital platforms, where people could share experiences and self-care strategies in real time.
The PIONEER Project then responded to this call by asking the question: How can we improve the management of LR through peer counselling, participatory video, and telehealth forums in two different settings — a hospital in Surabaya and community clinics in Madura, Indonesia?
Objectives
Our project is carried out in two phases, each with different objectives.
Phase 1: Understand the experiences of individuals living with leprosy reactions in India and Indonesia
- Explore the impact of leprosy reactions on people’s daily lives, health, and well-being.
- Identify perspectives and barriers faced by people affected by LR in accessing and completing treatment.
- Lay the groundwork for better solutions by actively involving people affected by LR in discussions about how care could be improved.
Phase 2: Co-Design and Pilot Interventions at two settings in Indonesia
- Co-design three interventions — peer counselling, telehealth forum, and participatory video — together with affected individuals, health professionals, and leprosy experts.
- Pilot, refine, and compare interventions to understand what works, what doesn’t, and how to make them feasible and acceptable.
- Empower people with LR by involving them as co-implementers (e.g., peer counsellors, video creators, telehealth discussion facilitators).
- Build capacity and foster co-learning through training of trainers and exchanges between communities in Cirebon, Surabaya, and Madura.
- Develop practical recommendations and a guide for adapting these interventions to other settings.
Approach
Together with the affected individuals, health professionals, and experts, we use a participatory approach to co-design and develop practical solutions that respond to the needs of people with LR. The experiences and perspectives of people with LR are placed at the center of this work. Their stories contribute to more nuanced and in-depth understandings of how leprosy reactions impact their lives and what support they need. Interventions that truly reflect their voices were then piloted in both hospital and community settings in Indonesia in order to learn what works best. Practical recommendations were then formulated so others can use and adapt the approach to their given context.
Athena’s role
The Athena Institute coordinates the project and co-leads research activities including training and preparation, data collection, piloting intervention, integration and dissemination of findings in Indonesia and India.