Effects on the daily lives of children and teenagers who lived with leprosy

Abstract

The study aims to understand the effects of the disease on the daily lives of children and teenagers affected by leprosy. This was a qualitative research based on the theoretical framework of ‘The Sociology of Erving Goffman’. We interviewed 14 participants individually, nine children and five teenagers, who underwent treatment for leprosy and were cured. A semi-structured interview was used, covering sociodemographic information and guiding questions about the participants’ experiences with the disease, family, social aspects, and perceptions derived from the experiences. The data were analyzed by the sociology of Erving Goffman. The narratives emphasized the effects on daily life related to leprosy discovery, interaction networks, such as family and health professionals, health care, overcoming strategies and expectations. It was verified that the predominant element of the research is anchored in the fear of being discovered and discredited, in the perspective of having their identity of health resignified, by the illness, and by the evidence in view of the participant’s experience due to prejudice, anonymity, and secret. This symbolically suggests that the participants experienced a certain construction of negative social life around leprosy. The illness directly interferes with their daily life and development, especially in the participant’s social relationships.

Experiences of social stigma of people living with Hansen's disease in Brazil: silencing, secrets and exclusion

“…Hansen's disease interferes not only with the lives of patients or former patients, but also with their families, friends and the people they live with. 17 In general, people associate the disease with Hansen's disease, which refers to an incurable disease, with extensive and disfiguring lesions, that affected impure people and separated them from their families, from their acquaintances, isolating them. 18 This denotation means that the disease is associated with terrifying and negative stigmas.…”