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Boys and parents’ perceptions of living with haemophilia and an inhibitor Cover

Boys and parents’ perceptions of living with haemophilia and an inhibitor

By: Anica Phillott  
Open Access
|Apr 2018

Abstract

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. Commentary, J Haem Pract 2014;1(1):23.

DOI: https://doi.org/10.17225/jhp.00006 | Journal eISSN: 2055-3390
Language: English
Page range: 17 - 22
Published on: Apr 21, 2018
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2018 Anica Phillott, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.