Health-related stigma is an important problem in the field of public health. It affects the lives of patients, and often their families, and plays a role in the control and management of stigmatized conditions. A wide range of stigma-reduction interventions have been developed and implemented across different fields, such as HIV/AIDS and mental health. However, the efficacy of stigma-reduction interventions is not self-evident. Various studies have shown that increasing public knowledge about a health condition alone is insufficient. Interventions that bring about a change in the perceptions, behaviours and actions of people, and that enable such changes to be sustained over time, are needed. In the case of leprosy, the disease and the stigma share a very long history.
The aim of the SARI Project was to reduce leprosy-related stigma in the community of Ceribon district, Indonesia, and to reduce its impact among persons affected by leprosy and their families. Specifically, the project assessed the effectiveness of three stigma-reduction interventions: counselling, contact between the community and affected people, and socio-economic development (including micro-credit). These interventions were selected based on their potential as described in the existing literature on stigma reduction.
The SARI project was carried out by a research team that included researchers, research assistants and three PhD students, from Indonesia as well as from the Athena Institute. Mixed methods were applied, including different scales, interviews and focus group discussions. The project employed an action research methodology to develop and continuously refine stigma reduction interventions during the project implementation. People affected by leprosy or disability were involved in every aspect of the project, and capacity-building for individuals and organizations was a key co-objective of this project.
This project resulted in three PhD dissertations and 13 scientific articles, and the results were presented in various conferences. The research was undertaken in collaboration with Universitas Indonesia and Disability Studies in the Netherlands. The study was supported by grants from Netherlands Leprosy Relief, Sasakawa Memorial Health Foundation, the American Leprosy Missions and effect: hope (formerly The Leprosy Mission Canada). Afterwards, the NGO involved in the project, FKDC, built on the findings and products of the project, and continued working for people with leprosy.