<abstract xmlns="http://www.w3.org/1999/xhtml"><p> Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.</p></abstract>

Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.

The impact on parents of having a child with haemophilia

The Journal of Haemophilia Practice

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

{"article-title":"The impact on parents of having a child with haemophilia"}

Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought...

The impact on parents of having a child with haemophilia

Article Category: Clinical Review

Publié en ligne: 21 avr. 2018

Pages: 4 - 14

DOI: https://doi.org/10.17225/jhp00075

Mots clés
quality of life, haemophilia, children, parents

© 2018

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

The impact on parents of having a child with haemophilia

Article Category: Clinical Review

Publié en ligne: 21 avr. 2018

Pages: 4 - 14

DOI: https://doi.org/10.17225/jhp00075

Mots clésquality of life, haemophilia, children, parents

© 2018

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

Mots clés
quality of life, haemophilia, children, parents