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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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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author Fletcher Simon
author_facet Fletcher Simon
author_sort Fletcher Simon
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description 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.
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spelling doaj-art-a01b5a84a6614a33a4e03cc19a9c39b52025-02-02T15:48:30ZengSciendoThe Journal of Haemophilia Practice2055-33902024-05-01111788110.2478/jhp-2024-0012Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choirFletcher Simon0SIMON FLETCHER is Principal Researcher at Haemnet and was a clinical research nurse at the Oxford Haemophilia and Thrombosis Centre, Oxford University Hospitals NHS Foundation Trust. He is undertaking a PhD exploring the impact and lived experience of gene therapy for haemophilia, Oxford, EnglandWith 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.https://doi.org/10.2478/jhp-2024-0012haemophiliagene therapynursesprofessional practicequalitative research
spellingShingle Fletcher Simon
Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
The Journal of Haemophilia Practice
haemophilia
gene therapy
nurses
professional practice
qualitative research
title Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
title_full Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
title_fullStr Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
title_full_unstemmed Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
title_short Living, Caring, Learning – The power of qualitative research in bleeding disorders care: One voice, from soloist to choir
title_sort living caring learning the power of qualitative research in bleeding disorders care one voice from soloist to choir
topic haemophilia
gene therapy
nurses
professional practice
qualitative research
url https://doi.org/10.2478/jhp-2024-0012
work_keys_str_mv AT fletchersimon livingcaringlearningthepowerofqualitativeresearchinbleedingdisorderscareonevoicefromsoloisttochoir