J Haem Pract 2013; 1(1):J Haem Pract 2014; 1(1): 17-22. doi: 10.17225/jhp00006

Authors: Anica Phillott

Anica Phillott
Haemophilia Network Nurse Manager
North Hampshire Haemophilia Centre, Basingstoke and North Hampshire Hospital NHS Foundation Trust, Uplands House, Aldermaston Road, Basingstoke RG24 9NA, UK.


This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study.


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