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

Partners
Forum Komunikasi Difabel Cirebon
Mimi Institute

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

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

Final project summary:
Leprosy reactions (LR) are serious complications of leprosy that can cause nerve damage, disability, pain, and other long-term health problems. Beyond the physical effects, people experiencing LR often face emotional distress, anxiety, stigma, and financial hardship. In 2018, people affected by LR in Indonesia highlighted the need for better peer support and suggested creating a digital platform where patients could share experiences, access information, and support one another.

In response, this project developed and tested three complementary peer-support interventions: peer counselling, a telehealth forum, and a participatory video. People who had recovered from leprosy reactions played a central role in all three interventions. They served as peer counsellors, facilitated discussions in the telehealth forum, and helped create and act in the participatory video. The study explored how these approaches could improve the management of leprosy reactions in both an urban hospital setting in Surabaya and rural primary healthcare clinics in Bangkalan, Madura.

Using a participatory mixed-methods approach, the study was conducted between November 2022 and July 2023. It involved people undergoing treatment for leprosy reactions, their family members, peer co-implementers with lived experience, and healthcare workers. Surveys, interviews, and focus group discussions were used to assess changes in knowledge, self-care practices, treatment motivation, mental well-being, stigma, and the feasibility of the interventions.

A total of 127 participants took part in the study. People affected by leprosy who served as co-implementers showed strong commitment to supporting others and sharing accurate information about leprosy reactions. Following the pilot, several additional participants expressed interest in becoming peer supporters, highlighting the potential for a sustainable peer-support network.

All three interventions were found to be feasible and well accepted by participants, family members, healthcare workers, and peer facilitators. However, peer counselling had the greatest overall impact. Participants reported better understanding of leprosy reactions, increased motivation to continue treatment, reduced feelings of isolation, lower levels of internalized stigma, and improved mental well-being. Many explained that speaking with someone who had experienced similar challenges helped them feel understood, supported, and less alone.

The telehealth forum also produced positive results by improving access to information and enabling participants to connect with others experiencing LR. For many, the opportunity to communicate in real time reduced feelings of isolation and strengthened treatment engagement. However, its impact on stigma and mental well-being was less pronounced than that of peer counselling. While participants in Surabaya considered the telehealth forum a promising addition to routine care, those in rural Bangkalan reported barriers such as poor internet connectivity and limited digital literacy.

The participatory video provided a powerful platform for people affected by LR to share their experiences and encourage others. Video screenings increased knowledge among patients and family members and stimulated discussion in clinic waiting rooms. Although its impact on stigma and mental well-being was more limited, it helped raise awareness, promote understanding, and facilitate conversations about living with LR.

Overall, the interventions complemented one another. Peer counselling offered the most personalised support, telehealth expanded access to information and peer connections, and participatory video created opportunities for learning and discussion through shared experiences.

The study also identified several important considerations for future implementation. Sustained peer counselling would require reliable funding, transport support, and regular scheduling. The telehealth model may be more suitable in urban areas where internet access and digital skills are stronger, while greater involvement of healthcare workers would help address participants' clinical questions. For participatory videos, participants recommended covering a broader range of topics and producing shorter videos to maintain audience engagement.

The findings demonstrate that peer-support interventions can play an important role in improving the lives of people experiencing leprosy reactions. All three approaches increased knowledge and treatment motivation, while reducing isolation and internalized stigma. Of the interventions tested, peer counselling showed the strongest overall impact and should be considered a priority for future scale-up. Any expansion of these approaches should actively involve people with lived experience of leprosy reactions in both the design and implementation of the programme to ensure it remains relevant, effective, and responsive to patients' needs.

Impact

Putri, A. I., de Sabbata, K., Agusni, R. I., Alinda, M. D., Darlong, J., de Barros, B., ... & Peters, R. M. (2022). Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries. PLoS neglected tropical diseases, 16(6), e0010476.

Maulana, A. T., Putri, A. I., Mengistu, B. S., Walker, S. L., & Peters, R. M. (2025). Development, validation and reliability of knowledge, attitudes and practice questionnaire for people affected by leprosy reactions. Global public health, 20(1), 2501163.

Putri, A. I., Peters, R. M., De Sabbata, K., Mengistu, B. S., Agusni, R. I., Alinda, M. D., ... & Zweekhorst, M. B. (2025). A socio-ecological model of the management of leprosy reactions in Indonesia and India using the experiences of affected individuals, family members and healthcare providers. BMC health services research, 25(1), 196.