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.

Quality of life, psychosocial strains and coping in parents of children with haemophilia

“…So far, there has been little research on the impact of parents caring for a child with haemophilia [4]. While current qualitative assessments expose different sources of stress and emotional strains [4,6], in the present study, parents reported comparatively low psychosocial strains in a quantitative assessment. Compared to parents of children with JIA, the parents of children with haemophilia perceived less emotional burden due to their child’s illness.…”

Treatment of hemophilia: A qualitative study of mothers’ perspectives

“…Our findings revealed that carrier mothers experience challenges with treatment both in the home environment and in contact with the healthcare system. In the home setting, parents must learn to identify bleeds and administer factor treatment intravenously and gain confidence in their expertise and skills . Inserting a cannula in your child can, no matter how good ones skills are, be a stressful experience.…”

The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)

“…Caring for a child with haemophilia can cause caregiver burden through personal sacrifice, financial impacts, emotional stress and impaired health status of the caregiver . The caregiver may have to give up work to care for their child, at least during the years following diagnosis . They may also need to attend regular hospital appointments, which can be time‐consuming and financially burdensome.…”