Families’ experience in managing children with sickle cell anemia: implications for care

Abstract

Objective: to understand families’ experience in managing children with sickle cell anemia. Method: this qualitative study of 14 families of children with sickle cell anemia was conducted by semi-structured interviews addressing the families’ management, experiences and coping from diagnosis to illness. The narrative technique was used and Symbolic Interactionism gave the theoretical framework. Results: the families’ experiences revealed that they are constantly vigilant and protective, and have to face challenges from the moment their children are diagnosed with sickle cell anemia. Their progress was hindered by health personnel’s lack of knowledge about the disease, lacunae in the health care system, and a lack of information about the disease, which imposed a reworking of family dynamics. Conclusion: health services and personnel must be trained to meet the needs and demands of children with sickle cell anemia and their families, and to provide information to strengthen them.