Perceived social restriction in leprosy-affected inhabitants of a former leprosy colony in Northeast Brazil

In Brazil, isolation of individuals affected with leprosy was compulsory by law from 1920 to 1962, but in reality, confinement of patients to leprosaria continued until the 1980s. The social participation restriction of people still living in these institutions has never been investigated systematically. To examine the extent and type of participation restriction perceived by former leprosy patients living in the Centro de Convivência Antônio Diogo (CCAD), a previous leprosy colony in rural Northeast Brazil, by using the Participation Scale. Forty (51-9%) out of 77 individuals reported significant participation restrictions, mainly related to work and mobility. Perceived participation restriction was significantly higher in people living in nursing units of the CCAD (P = 0-001), if diagnosis of leprosy was made before 1982 (P = 0.002), in the presence of walking limitation (P < 0.001) and visible physical alterations (P = 0-002), such as foot deformities (P = 0.002), saddle nose (P = 0.03) and blindness (P = 0.04), and in those individuals who did not receive visitors (P = 0.004). Social rehabilitation, especially in the areas of work and mobility, is strongly needed together with prevention of debilitating physical sequelae and reduction of stigmatisation.