A temporal and sociocultural exploration of the stigma experiences of leprosy patients in Brazil

Summary

Objective: Primary aim: To explore the stigma experiences of current and ex-leprosy patients in Brazil. Secondary aim: To explore these stigma experiences in the sociocultural context of Brazilian society. Method: Twenty seven semi-structured face-to-face interviews were conducted at Instituto Lauro de Souza Lima, Bauru, Sa˜o Paulo, Brazil. Results: Three main themes emerged regarding leprosy stigma in Brazil: 1) Changing attitudes towards leprosy patients, 2) Acts of discrimination experienced by leprosy patients and 3) The complications of disability caused by leprosy. Conclusions: The majority of the study participants were low-income Brazilians, which coincides with national statistics on people affected by leprosy in Brazil. Participants reported suffering from stigma and discrimination. But overall, patients in this sample believe that national attitudes toward leprosy patients are improving, and stigmatising attitudes are less severe than in the past. Friends and families are usually supportive. Patients suffer negative mental health consequences and internalisation of stigma from the effects of some treatments for leprosy reactions, and from visible deformities. Patients were ill prepared for the severe physical and mental effects of leprosy reactions and seqeulae. It is recommended that patients are informed about the chronicity of leprosy and the potential for disease reactivation, as well as the required treatments and the side-effects of these. Additionally, faster disease diagnosis should help prevent the development of sequelae and disabilities. Media and educational campaigns, facilitated by a changing context of narrowing (but still very wide) socio-economic inequalities in Brazil, are needed to help reduce stigma and discrimination for leprosy.