Parents of children with haemophilia – a transforming experience

Abstract

Owing to the improvements in the management of haemophilia, children with severe haemophilia in the United Kingdom have very different experiences of their condition compared with many adults' early experiences of haemophilia. However, haemophilia can still have physical and social effects which can impact on the quality of life, not only for a child who has the condition, but also for their parents. The purpose of this study was to undertake a qualitative exploration of the impact of haemophilia on parents. The participants included 12 parents of children with severe haemophilia who took part in interviews or focus groups. Four major themes emerged from the data which were initial experiences, managing the condition, engaging with others and developing mastery. The findings highlighted the importance of evaluating parents' experiences. Parents are deeply affected by their child's condition and their lives are transformed by the experiences of living with a child with haemophilia. Parents' responses are influenced by how well the child manages the disorder and the difficulties they experience. Further studies are required in order to develop a more complete understanding of the impact of haemophilia on parent's lives.