SICKLE CELL DISEASE AND ITS PSYCHOSOCIAL ASPECTS: THE LOOK OF PATIENT AND CAREGIVER FAMILY

Introduction: Sickle Cell Anemia is a genetic and inherited disorder characterized by chronic hemolytic anemia and vaso-occlusive crises causing acute tissue damage and organ progressively. In Brazil, it is a genetic disease and most prevalent hereditary and occurs primarily in African descent due to African genetic heritage, because it is a disease originating in Africa. Materials and Methods: A descriptive exploratory research with a qualitative approach, carried out in the municipality 197 km from Salvador, Bahia, Brazil, the state capital. The study included ten people, including five patients with sickle cell disease and five family members. Data collection occurred during the months of July and August 2012, with the completion of semistructured interview with a tape recorder. The analysis of data was left of the Technical Content Analysis proposed by Bardin (2009). Results: Four categories emerged from the analysis namely: feelings related to the condition of chronic disease; social relations; living with sickle cell anemia and its limitations; knowledge of family members of sickle cell anemia. Discussion and Conclusions: The patients showed the presence of psychosocial obstacles, which together with the chronic condition, change their quality of life. Besides that, it became clear that the social and economic factors influence the quality of life, unemployment being one of the most impactful, contributing negatively to dissatisfaction with their quality of life. Conluie that it is necessary to (re) construction of effective measures for the control of psychosocial disorders that adversely affect the quality of life of patients with sickle cell anemia.