Community stigma and desired social distance towards people affected by leprosy in Chandauli District, India

Objective: To collect baseline data on community stigma against leprosy and leprosy-related knowledge and ideas, with a view to develop contextualised community education and stigma reduction interventions. The data will also be used to evaluate subsequent stigma-reducing interventions. Methods: Community members (n = 371) in Chandauli District, India, were interviewed, using a knowledge questionnaire, the EMIC Community Stigma Scale (EMIC-CSS) and Social Distance Scale (SDS). In the latter two scales, a higher sum score indicates a higher level of stigmatizing and negative attitudes of community members towards leprosy-affected people. Linear and quantile regression analyses were applied to explore the relation between (sociodemographic) covariates and the level of negative attitudes. Results: Community members indicated that avoidance of people affected by leprosy, problems with (prospective) marital life, concealment, and shame and embarrassment are present. Linear regression showed that knowing people affected by leprosy and being a government employee significantly increased ones mean EMIC-CSS score, whereas a higher level of education significantly decreased this. Additionally, community members reported a desire to create social distance between people affected by leprosy and their children. Quantile regression showed that increased leprosy-specific knowledge and religion were associated with significantly decreased SDS scores, whilst housewives had significantly increased SDS scores. Knowledge was poorest regarding the transmission and cause of leprosy: only 8.1% and 10.5% knew the correct route of transmission and cause of leprosy. Conclusion: The level of negative attitudes of the community towards leprosy is high in Chandauli District, which may affect many aspects of the lives of people affected by leprosy. Community members knew least about the transmission and cause of leprosy and these domains should, therefore, be considered when designing stigma-decreasing interventions.