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

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

By: Simon Fletcher  
Open Access
|May 2024

References

  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 [Unpublished BA dissertation] Cheltenham: University of Gloucestershire; 2008.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.
  6. Fletcher S, Jenner K, Holland M, and Khair K. Expectation and loss when gene therapy for haemophilia is not an option: an Exigency sub-study. Haemophilia 2023; 29(3): 1-8. doi: 10.1111/hae.14774.
  7. John Donne. Meditation XVII. In: Devotions upon Emergent Occasions Together with Death’s Duel. Michigan: Ann Arbor Publishing; 1959, 108-109.
  8. Fletcher S, Jenner K, Holland M, Khair K. Barriers to gene therapy, understanding the concerns people with haemophilia have: an exigency sub-study. Orphanet J Rare Dis 2024; 19: 59. doi: 10.1186/s13023-024-03068-2.
  9. Fletcher S, Pembroke L, Holland M, Khair K. An exploration of the impact of gene therapy on the lives of people with haemophilia and their families: a protocol for the mixed-methods Exigency Study. BMJ Open 2022; 12: e060351. doi: 10.1136/bmjopen-2021-060351.
  10. Fletcher S, Jenner K, Pembroke L, Holland M, Khair K. The experiences of people with haemophilia, and their families, of gene therapy in a clinical trial setting: Regaining Control, the Exigency Study. Orphanet J Rare Dis 2022; 17: 155. doi: 10.1186/s13023-022-02256-2.
  11. Zimmer L. Qualitative meta-synthesis: A question of dialoguing with texts. J Adv Nurs 2006; 53: 311-8. doi: 10.1111/j.1365-2648.2006.03721.x.
  12. Finfgeld-Connett D. Generalizability and transferability of meta-synthesis research findings. J Adv Nurs 2010; 66: 246-54. doi: 10.1111/j.1365-2648.2009.05250.x.
Language: English
Page range: 78 - 81
Published on: May 7, 2024
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2024 Simon Fletcher, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.