CUSTÓDIO, L. L. Doença falciforme: a vivência e o significado nas mãos e vozes das crianças e adolescentes [Sickle cell disease: experience and meaning in the hands and voices of children and adolescents]. 120 p. Master’s Dissertation. Universidade Estadual Do Ceará. Fortaleza (CE), 2016.
Available on: LÍVIA LOPES CUSTÓDIO.pdf (uece.br)
Sickle cell disease (DF) is a chronic disease that is part of a group of common hereditary hemolytic anemias, causing a change in the beta globin gene from normal hemoglobin (Hb A), which replaces an abnormal hemoglobin molecule called hemoglobin S ( Hb S). This hemolytic erythrocyte disorder causes damage to organic tissues with complications of signs and symptoms of acute painful crises triggering pilgrimages in various hospitals and specialties, complications, treatments, and intercurrences in search of care. The goal was to understand how children who are diagnosed with sickle-cell disease experience and signify the process of becoming ill. This is a qualitative descriptive study developed in a pediatric unit of a public hospital specialized in a tertiary unit of the State of Ceará, in agreement with the Unified Health System (SUS), located in the city of Fortaleza. Sixteen children and adolescents with sickle cell disease, aged five to 15 years, participated in the study. The data were collected from May to July 2016, through two semi-structured interviews, the first one being applied to the parents to characterize the participants, and the second was directed exclusively to children and adolescents, who responded through Drawing-and-Story Procedure or speech, and the analysis was based on the basic assumptions of Bardin content analysis. The research was submitted for submission, appreciation and approval under opinion number 1,547,314 of the Research Ethics Committee of HIAS and UECE. As a result, the characterization of the research participants was carried out; and a major thematic category: Children and adolescents: analyzing drawings and voices, which was subdivided into two: Having sickle cell disease means; and Representation of Pain: The pain that hurts, hurts a lot. It was learned that the majority of the participants were children, with more emphasis on drawing production, presenting difficulties to verbalize their emotions, feelings or even to explain their productions. It was concluded that sickle-cell disease is a chronic disease that has many consequences with changes not only in the lives of children or adolescents, but also in that of their relatives or guardians, since this event requires the establishment of a long and complex treatment that requires Care and constant care, considering the complications that the disease imposes.