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.