'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Autor: Griffin CP; Level 3 West, Hunter Medical Research Institute, New Lambton Heights, Newcastle, NSW 2305, Australia., Carlson MA; School of Public Health and Medicine, The University of Newcastle, Callaghan, NSW, Australia.; Hunter Medical Research Institute, Newcastle, NSW, Australia.; Mark Hughes Foundation Centre for Brain Cancer Research, The University of Newcastle, Callaghan, NSW, Australia., Walker MM; School of Public Health and Medicine, The University of Newcastle, Callaghan, NSW, Australia.; Hunter Medical Research Institute, Newcastle, NSW, Australia., Lynam J; School of Public Health and Medicine, The University of Newcastle, Callaghan, NSW, Australia.; Hunter Medical Research Institute, Newcastle, NSW, Australia.; Mark Hughes Foundation Centre for Brain Cancer Research, The University of Newcastle, Callaghan, NSW, Australia.; Department of Medical Oncology, Calvary Mater Newcastle, Newcastle, NSW, Australia., Paul CL; School of Public Health and Medicine, The University of Newcastle, Callaghan, NSW, Australia.; Hunter Medical Research Institute, Newcastle, NSW, Australia.; Mark Hughes Foundation Centre for Brain Cancer Research, The University of Newcastle, Callaghan, NSW, Australia.; Cancer Research, Innovation and Translation, The University of Newcastle, Callaghan, NSW, Australia.
Jazyk: angličtina
Zdroj: Palliative care and social practice [Palliat Care Soc Pract] 2024 Aug 19; Vol. 18, pp. 26323524241272106. Date of Electronic Publication: 2024 Aug 19 (Print Publication: 2024).
DOI: 10.1177/26323524241272106
Abstrakt: Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers.
Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews.
Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted.
Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones.
Competing Interests: The authors declare that there is no conflict of interest.
(© The Author(s), 2024.)
Databáze: MEDLINE
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