Family care for children with sickle cell disease / Cuidados de familiares a crianças com doença falciforme

Resumo

Objective: To analyze the care of families with children who have sickle cell disease. Methodology: A descriptive, exploratory  and qualitative study. It was used a record  of fifteen semi-structured interviews with family members of children under 14 years with sickle cell disease enrolled in August and September 2011 in the pediatric  hospitaI Lucidio Portella. Results: We observed a lack of parents' knowledge about the disease, and as a result in children’s care. Conclusion: The care of chronic illness patient should be extended until the household context, and it must be effective, providing better quality of life for these children. Descriptors: Sickle cell anemia, child care, chronic illness.