The Acceptability of Three Co-Created Peer Support Interventions for People Living with Leprosy Reactions in Indonesia: A Mixed-Methods Pilot Study

Background

Leprosy reactions (LR) are immune-mediated complications associated with disability, emotional distress, and social isolation. We identified a gap in affected-individual-informed interventions that aim to improve the management of LR in healthcare settings. To address this gap, we assessed the acceptability of three peer-support interventions co-created with people affected by LR in Indonesia.

Methods

Using an interactive learning and action approach, we co-created peer counselling, telesupport groups, and participatory video interventions which were piloted in an urban hospital and 13 rural community clinics. A mixed-methods design was applied with interviews, focus group discussions, and pre–post assessments involving four participant groups. Data were analyzed thematically using an acceptability framework.

Results

One hundred participants were enrolled, and 92 completed the pilot intervention between November 2022 and July 2023. Qualitative findings showed that all interventions were acceptable. Peer counselling provided emotional reassurance through shared experiences and was perceived as trustworthy and supportive. Perceived burdens differed by setting, with time constraints in urban facilities and geographical barriers in rural clinics. Knowledge improved significantly among participants of peer counselling and telesupport groups in rural settings. Telesupport groups facilitated connection, information exchange, and continuity of care. Digital access and literacy limited participation for some, particularly in rural areas. The participatory video was perceived as reassuring and informative. Improvements in knowledge, attitude, practices, and mental well-being domain scores were observed among urban participants, but responses in rural settings showed less change. Participants and co-implementers reported increased self-efficacy, participants’ confidence to perform required behaviors within peer support interventions, with effects shaped by intervention and setting.

Conclusions

The three co-created peer-support interventions were acceptable for individuals with LR in diverse healthcare settings. These outcomes highlight the importance and effectiveness of selective, and context-sensitive implementation of one or more peer-support modalities.

Author summary

People affected by LR may experience severe physical, psychological, and socioeconomic impacts, including pain, nerve damage, emotional distress, stigma, and loss of income and social roles[1,2]. LR place a significant burden on leprosy services as they require prolonged treatment and may adversely affect the lives of those affected. Our findings from an earlier study revealed a need for holistic interventions to improve the management of LR in Indonesia[1,2]. Most studies have focused on treatment of LR, with less exploration of tailored psychosocial approaches in healthcare settings for affected individuals. Peer counselling has been effective in reducing stigma and improving quality of life in various health contexts, including HIV, mental health, and leprosy in general. Telesupport groups are effective for remote health support. Participatory video has shown promise in empowering marginalized groups and reducing stigma. However, the three interventions have not yet been developed for individuals affected by LR.

To our knowledge, this is the first study to develop and pilot tailored peer counselling, telesupport, and participatory video for individuals experiencing LR in hospital or community clinic settings. We demonstrated that peer support interventions were acceptable in all the healthcare facility settings. Interventions were reported by participants to improve knowledge, self-motivation, and treatment adherence through sharing experiences. There were measurable improvements in knowledge, attitude, and willingness to disclose their leprosy diagnosis in particular for urban participants. Observed variation in facilitating factors of intervention’s acceptability across study sites highlights the influence of infrastructure, digital access, literacy, and healthcare capacity on intervention uptake and impact.

This study provides evidence that peer-support approaches complement clinical management of LR and improve stigma-sensitive care. Integrating these interventions into routine leprosy services could strengthen patient education, motivation, and social reintegration. Implementation should include peer counsellor training, investment in digital infrastructure, and sustained collaboration between health workers and affected stakeholders to promote holistic, person-centered care in leprosy and other neglected tropical diseases.