Affiliation:
1. SIMON 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 , England
Abstract
Abstract
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.
Reference12 articles.
1. Fletcher S. Does the Christian conception of the sanctity of life call into question the practice of withdrawal of treatment as it has euthanasia? [Unpublished BA dissertation] Cheltenham: University of Gloucestershire; 2008.
2. Lambert T, Benson G, Dolan G, et al. Practical aspects of extended half-life products for the treatment of haemophilia. Ther Adv Hematol 2018; 9(9): 295-308. doi: 10.1177/2040620718796429.
3. Fletcher S, Jenner K, Holland M, Khair K. The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me. Health Expect 2021; 25(1): 1-12. doi: 10.1111/hex.13404.
4. Makris M and Hermans C. A golden age for haemophilia treatment? Haemophilia 2018;24: 175-176. doi: 10.1111/hae.13411.
5. Fletcher S, Jenner K, Holland M, Chaplin S, Khair K. An exploration of why men with severe haemophilia might not want gene therapy: The Exigency study. Haemophilia 2021; 27: 11-15. doi: 10.1111/hae.14378.