Citation
J Haem Pract 2014; 1(3):J Haem Pract 2014; 1(3): 14-20. doi: 10.17225/jhp00030

Authors: Anica Phillott, Kate Khair, Christine Loran, Debra Pollard, Claire Forrester, Sharon Alavian, Susan Hook

Anica Phillott
Clinical Nurse Specialist in Haemophilia
Hampshire Hospitals NHS Foundation Trust, Basingstoke and North Hampshire Hospital, Aldermaston Road, Basingstoke, Hampshire RG24 9NA, UK.

Kate Khair
Consultant Nurse, Great Ormond Street Hospital for Children NHS Foundation Trust; Visiting Professor of Health and Social Care, London South Bank University
Great Ormond Street Hospital for Children NHS Trust, Great Ormond St, London WC1N 3JH, UK. Email: kate.khair@gosh.nhs.uk London South Bank University, 103 Borough Rd, London SE1 0AA, UK.

Christine Loran
Clinical Nurse Specialist in Haemophilia
University Hospital of Wales, Heath Park, Cardiff CF14 4XW, UK.

Debra Pollard
Clinical Nurse Specialist in Haemophilia
Royal Free London NHS Foundation Trust, Pond St, London NW3 2QG, UK.

Claire Forrester
Clinical Nurse Specialist in Haemophilia
University Hospital of North Staffordshire, Newcastle Rd, Stoke-on-Trent ST4 6QG, UK.

Sharon Alavian
Clinical Nurse Specialist in Haemophilia
Imperial College Health Care NHS Trust, London W2 1NY, UK.

Susan Hook
Clinical Nurse Specialist in Haemophilia
Royal Infirmary of Edinburgh, 51 Little France Crescent, Edinburgh EH16 4SA, UK.

Abstract

Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families.
Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia.
Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia.
Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.

Acknowledgements

The authors would like to thank the study participants and their families for taking part in this study and allowing their voices to be heard.
Editorial assistance in the preparation of this manuscript was provided by Cathy Garcia, and was financially supported by Novo Nordisk in compliance with international guidelines for good publication practice.
The authors state that they had no interests that might be perceived as posing a conflict or bias. The HaemophiliaLIVE ethnography project was developed and undertaken by Bedrock Healthcare Communications Ltd and funded by an unrestricted research grant from Novo Nordisk Ltd.

Sample

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