The daily routine of the adolescents who live with sickle cell anemia

Abstract

Sickle cell anemia is an ancient, hereditary, ancestral and ethnic disease, highly prevalent among us. The disease
is considerably restrictive due to its manifestations and clinical implications, particularly during adolescence. This is a qualitative, descriptive and exploratory study, based on the comprehensive sociology of Michel Maffesoli, aimed to understand the daily routine of adolescents with sickle
cell anemia, and their strengths, through the description of their way of life. Six adolescents aged between 10 and 19 years took part in the survey. They were registered at sickle cell anemia reference centers in the city of Salvador, Bahia, Brazil. The data were collected through semi-structured interviews and the content analysis technique was used. As a consequence, four categories emerged: The discovery of the disease; Living with the disease: clinical manifestations; Using masks and The Interference of the disease on the daily routine. Regarding to the infirmity, most of the adolescents were not diagnosed early and, despite being aware of its symptoms and the various ways of alleviating them, the interviewed were unfamiliar with sickle cell anemia. The findings of the study indicate that is essential to train nurses to deal with individuals with sickle cell anemia, creating educational strategies that enable the empowerment of the patients, encouraging self-care and minimizing, thus,
the complications of the disease.