Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir

With over three decades of nursing experience, Simon reflects on his experience as a research nurse at the Oxford Haemophilia and Thrombosis Centre at a time of huge change for haemophilia care and treatment. He recalls the impact of conversations with people with haemophilia about gene therapy, how...

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Bibliographic Details
Main Author: Fletcher Simon
Format: Article
Language:English
Published: Sciendo 2024-05-01
Series:The Journal of Haemophilia Practice
Subjects:
Online Access:https://doi.org/10.2478/jhp-2024-0012
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Summary:With over three decades of nursing experience, Simon reflects on his experience as a research nurse at the Oxford Haemophilia and Thrombosis Centre at a time of huge change for haemophilia care and treatment. He recalls the impact of conversations with people with haemophilia about gene therapy, how these challenged his assumptions about living with haemophilia, and how this prompted him to pursue a PhD. Highlighting the importance of listening to individual patient stories, Simon discusses how qualitative research contributes to a deeper understanding of what it is to live with a bleeding disorder. He considers the role of nurses in research and the importance of collaboration between research and clinical nursing teams as new treatments for haemophilia and other bleeding disorders emerge.
ISSN:2055-3390