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.

Musculoskeletal dysfunction is a common feature of haemophilia and along with other manifestations of this condition, there is a general perception that health-related quality of life (QoL) will be affected. Previous research using standardized questionnaires has demonstrated that QoL is lower in haemophilia groups compared with normal populations. However, disability studies and interviews with disabled people suggest that many disabled people experience positive life changes as a result of their illness and an affirmative model of disability has been proposed. A qualitative study involving focus groups and interviews was undertaken to explore these issues in a group of 19 severely affected adults with haemophilia. The focus groups and interviews were tape recorded and fully transcribed and the results subjected to thematic analysis. This paper focuses specifically on key issues that impacted on perceptions of QoL. The findings suggest that the participants' perceptions of their QoL were very positive. Possible reasons for this are proposed including the benefits of factor replacement, participants' recollections of their lifestyle before factor replacement, that having haemophilia was integral to the 'self' and finding a niche where they could be successful. A more positive affirmation of haemophilia may need to be considered when developing QoL measures.

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