Leprosy: meanings and experiences among adolescents with the disease and their family members

This research aimed at understanding the social representations of leprosy constructed by adolescents with the disease and their family members, including their perception about the impact of the disease in their daily life. Data of semi-structured interviews with 19 adolescents aged 12-18 years receiving medical treatment for leprosy and with 18 family members who lived in the same address were collected. Data were treated with thematic content analysis. Results showed that the emotion of fear and beliefs about contagion and prejudice were important elements of the leprosy representations. Participants perceived important negative changes in their daily life after diagnosis confirmation including suffering caused by the routine of medical procedures and physical pain. Patients perceived discrimination in the relationship with family members and friends, associated to the fear of contagion, and reported practices of concealment of signs of the disease to their peers. It was concluded that, given the permanence of a the archaic view of the disease and the impacts caused on the daily life of adolescents with leprosy and their families, it is necessary to expand information about the disease, to rethink health practices and to establish dialogic meetings in order to enable the reflection and construction of new meanings in relation to the disease, improving their quality of life.