<abstract xmlns="http://www.w3.org/1999/xhtml"><p> 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.</p></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.

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

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

{"article-title":"Boys and parents\u2019 perceptions of living with haemophilia and an inhibitor"}

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...

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

Article Category: Clinical Research

Publié en ligne: 21 avr. 2018

Pages: 17 - 22

DOI: https://doi.org/10.17225/jhp.00006

Mots clés
haemophilia, inhibitor, views, quality of life

© 2018

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

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

Article Category: Clinical Research

Publié en ligne: 21 avr. 2018

Pages: 17 - 22

DOI: https://doi.org/10.17225/jhp.00006

Mots cléshaemophilia, inhibitor, views, quality of life

© 2018

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

Mots clés
haemophilia, inhibitor, views, quality of life