The history life and work of people with leprosy users of the Health Service in the State of São Paulo

Abstract

This work began with a pilot project for professional empowerment or semi-professionalizing courses developed between 2001 and 2002, with eleven users of the health services of the State of São Paulo. These users were people with leprosy and his contacts. After the subject’s selection, a qualitative research was performed during which the researchers tried to rescue the life history and the working status of those users, seeking to establish the changes occurred after the leprosy diagnosis, specially at work. The used tools were a form and the topic life history. The data analysis showed following categories: life quality; perceptions and representations about the disease; social condition changes due to the diagnosis; leprosy and working relations; and leprosy and the health system. Among other aspects, it was noted that: the users think that lying or omitting the disease is necessary in order to get or to keep a job, since prejudice, discrimination and isolation resulting from
the stigma still exist; also noted was the great benefit the subjects had when they enhanced their self-esteem thanks to the provided empowerment course. On the other side, the reports showed that most professionals of the health area are still unprepared to identify and diagnose leprosy patients. The suggested proposals are: to intensify the clarification campaigns for the population; to make a research in order to understand the user’s route to the health unit and the leprosy diagnosis; the continued education of the health system’s professionals; to intensify the training during the regular courses and post-doctoral courses of the future health professionals about how to suspect, diagnose and treat leprosy; and to outreach the empowerment courses to other units in the State of São Paulo.