Development of a rights-based counselling practice and module to reduce leprosy-related stigma and empower people affected by leprosy in Cirebon District, Indonesia

Objectives: Leprosy-related stigma remains a major and difficult challenge to tackle. This study charts the development of a counselling practice and module in which stigmatised individuals are involved as lay and peer counsellors. The practice and module aims to reduce leprosy-related stigma in Cirebon District, Indonesia. Results: An exploratory study including 53 interviews and 5 focus group discussions aimed to understand the characteristics of people affected by leprosy and the views of the community. Findings were used to develop a draft counselling practice which was then piloted. Sixty-two clients and several family members received counselling during the pilot study. The results of the exploratory and pilot study led to a counselling practice, comprised of an integration of individual, family and group counselling. The provision of medical knowledge about leprosy played an important role in combatting stigma at different levels. Responding to views expressed during the pilot, the proposed module focuses less on feelings of stigmatisation and more on taking action among others by raising awareness of human rights. This study showed that five counselling sessions can trigger clients to move from a seemingly hopeless situation into a place where one feels hope, takes initiatives and experiences less internalised stigma. Conclusion: Despite the context-dependent nature of stigma, the counselling module has potential as a stigma-reduction intervention for Indonesia and other countries where leprosy-related stigma is widespread. The counselling module presented here should be adjusted to a new context and tested before it can be scaled up.