Myrin Westesson, Linda

Aims and Objectives: To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this.

Background: Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents.; Design: A multicentre, cross-sectional study.

Hemophilia is a complex condition to manage, especially for parents to newly diagnosed children. This grounded theory study explores parents’ learning processes and illness management in daily life during the first year after the start of their child’s treatment. Using a longitudinal qualitative design, eight parents of four children were interviewed repeatedly during 12 to 14 months. The core category, reaching independence through forced learning, reflected the parents’ learning process and their experiences of the challenges during the first year after start of treatment.