Citation
J Haem Pract 2016; 3(2):1 - 5. doi: 10.17225/jhp00078

Authors: Kate Khair, Kuixing Li, Ljiljana Rakić, Bongi Mbele, Robyn Shoemark, Marlene Beijlevelt, Jim Munn, Georgina Floros, Mahmoud Abu-Riash, Ana Claudia Acerbi

Kate Khair
Haemophilia Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3JH UK. Email: Kate.Khair@gosh.nhs.uk

Kuixing Li
Department of Hematology, Peking Union Medical College Hospital, Peking, China

Ljiljana Rakić
Haemophilia Centre and Blood Transfusion Institute of Serbia. 11000 Belgrade, Serbia

Bongi Mbele
Haemophilia Comprenhensive Clinic, Charlotte Maxeke Academic Hospital, Parktown, Johannesburg 2001, South Africa

Robyn Shoemark
The Children’s Hospital at Westmead, Sydney, New South Wales, Australia

Marlene Beijlevelt
Haemophilia Treatment Centre, Academic Medical Centre, Meibergdreef 9, 1105 Amsterdam, The Netherlands

Jim Munn
University of Michigan – Hemophilia and coagulation disorders Program, 1500 E. Med Cr. Dr. Ann Arbour, Michigan, USA

Georgina Floros
Hemophilia Centre, St Michael’s Hospital, Toronto, Ontario M5B 1W8, Canada

Mahmoud Abu-Riash
Oncology Center, King Faisal Specialist Hospital and Research Center, P.O. Box 3354, Riyadh 11211, Saudi Arabia

Ana Claudia Acerbi
Federal University of São Paulo, São Paulo, Brazil

Abstract

Haemophilia nursing roles continue to develop alongside nursing as a profession. There are now nurses who practice autonomously, much like a medical practitioner, and many who have extended their roles to deliver direct patient care, education and research. There has been little, if any, comparison with haemophilia nurse roles internationally, nor of the impact of these roles on patient reported outcomes. This paper reports the results of an international survey, of 297 haemophilia nurses from 22 countries, describing current day practice and care. Many nurses work above and beyond their funded hours to improve care through research and evidence-based practice. While some are able to attend international meetings to report and discover this evidence, many due to financial constraints, are not. Others reported difficulty with communicating in English, which limited congress attendance. With on-line learning capability, sharing of best practice is now possible, and this approach should be a platform developed in coming years to further enhance haemophilia nursing practice and ultimately patient care.

Acknowledgements

The authors wish to thank all of the haemophilia nurses who participated in the survey.

Sample

Global

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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.