The day-to-day life of families with children and adolescents with sickle cell anemia

Abstract

Sickle cell anemic is a common disorder among hemoglobinopatias, characterized by a genetic mutation which affects the function of the red blood cells, causing episodes of vaso-occlusion and predisposing sufferers to infections. This study aims at describing the day-to-day life of families with children and adolescents with sickle cell anemia. This was a descriptive, exploratory, qualitative investigation. Data collection was achieved by recording semi-structured interviews with relatives of ten under 18-year-old patients with sickle cell anemia attended in the Hemope Clinic in October 2006. The selection criteria of interviewees were that they lived with and were first degree relatives of the patient. The exclusion criterion was that the patient was at risk of death. The sample size followed the criteria of saturation discussed by Mynaio. The technique of "Analysis of Content" described by Bardin was used in the evaluation. The interviews were completely transcribed and grouped according to their similarities, searching for relevant feelings originating from codes and themes: 1. Theme: Involvement of the family (Exclusiveness of attention; codes: overprotection, relinquishing other roles, overload of mother, learning with the illness); 2: Theme: Impact of the illness (chronic illness affecting family; codes: non-acceptance, fear of death); 3. Theme: Facing challenges (Support networks, Healthcare services; codes: spiritual, professional, and family support; hospital structure). We verified difficulties in the acceptance of the illness by the family and the burden of the mother with necessary patient care. In conclusion, healthcare assistance models should allow the family to act as a co-participant in the care of the patient in order to facilitate the patient's adaptation to the disease.