Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.

OBJECTIVE: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives. METHODS: The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients. RESULTS: In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection. CONCLUSION: Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.

Dealing with stigma: experiences of persons affected by disabilities and leprosy.

Persons affected by leprosy or by disabilities face forms of stigma that have an impact on their lives. This study seeks to establish whether their experiences of stigma are similar, with a view to enabling the two groups of people to learn from each other. Accounts of experiences of the impact of stigma were obtained using in-depth interviews and focus group discussion with people affected by leprosy and by disabilities not related to leprosy. The analysis shows that there are a lot of similarities in impact of stigma in terms of emotions, thoughts, behaviour, and relationships between the two groups. The main difference is that those affected by leprosy tended to frame their situation in medical terms, while those living with disabilities described their situation from a more social perspective. In conclusion, the similarities offer opportunities for interventions and the positive attitudes and behaviours can be modelled in the sense that both groups can learn and benefit. Research that tackles different aspects of stigmatization faced by both groups could lead to inclusive initiatives that help individuals to come to terms with the stigma and to advocate against exclusion and discrimination.

The meaning of leprosy and everyday experiences: an exploration in cirebon, indonesia.

It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people's experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be "cured."