Children's knowledge of illness and treatment experiences in hemophilia

The purpose of this study was to describe what children with hemophilia understand about their unique illness and treatment experiences. Subjects included 20 children with hemophilia between the ages of 6 years and 13 years who had no evidence of cognitive problems. Following the principles of grounded theory, data about children's experiences of hemophilia and their understanding of these experiences were obtained through a semistructured interview using five pictorial stimuli representing illness and treatment domains. Data analysis was conducted using the constant comparative method. Children's knowledge was described in regard to (a) the nature of hemophilia and its origin, (b) the major illness experience: bleeding, (c) the nature of treatment and its purpose, and (d) the major treatment experience: poking. Findings indicated that although school-aged children with hemophilia were engaged actively in gaining knowledge about their disease and treatment, the overall level of understanding of children aged 6 years to 13 years did not follow a distinct path of development. Major areas of knowledge deficiency included knowledge about how one contracts hemophilia and the purpose of treatment.