This study looks at how the management of leprosy reactions be improved by the implementation of peer-counselling, participatory video and teleconsultation in Indonesia.

Improving the management of leprosy reactions and the quality of life of persons affected: developing and testing three interventions in Indonesia

Project coordination

• Vrije Universiteit Amsterdam
• Dr Soetomo General Hospital
• London School of Hygiene & Tropical Medicine

Partners

• Forum Komunikasi Difabel Cirebon
• Mimi Institute

Project summary

Leprosy reactions are serious complications of leprosy which lead to nerve function impairment, disability and other long-term consequences such as pain. In 2018, this team conducted an LRI funded study in India and Indonesia that aimed to improve the management of leprosy reactions by identifying the experiences and perspectives of people with this condition. Based on the inputs of Indonesians with leprosy reactions, three promising hypotheses of interventions were identified: peer-counselling, participatory video and teleconsultation. This study aims to co-create, pilot, evaluate and adjust these interventions in two different settings in Indonesia, to manage leprosy reactions.

The interventions will be piloted separately and as a package in leprosy endemic area in Indonesia (Surabaya and Madura) to better understand the mechanism of each idea, the interactions between them, the role of context and the advantage and disadvantage of the proposed interventions in relation to different groups of people with leprosy reactions. The aim is to involve 8 persons affected by leprosy reactions as co-implementers. All will be involved as participants in a participatory video (makers of the video). On each study site, a team of 2 will become peer counsellors, and another 2 will co-organise the participatory video gatherings and facilitate the teleconsultation groups in parallel. All will receive the complete training package. The success of the pilot will be measured through surveys, interviews and focus groups discussion before and after the implementation. The survey measurements will allow to assess how much participants in the pilot are better able to deal with issues relating to the different measured domains, and the interviews and focus groups part will explore the participants’ experience and perceptions of the intervention, what is working and what is not, for what reason and how we can improve.