Citation
J Haem Pract 2016; 3(2):1 - 11. doi: 10.17225/jhp00075

Authors: Kate Khair, Steve Chaplin

Kate Khair
Nurse Consultant, Haemophilia Centre, Great Ormond Street Hospital for Children NHS Trust, London, UK. Email: Kate.Khair@gosh.nhs.uk

Steve Chaplin
medical writer, Email: stevechaplin504@gmail.com

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.

Sample

Caregiver

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The Journal of Haemophilia Practice is published by Haemnet.

Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.