Griffin Cassandra P, Carlson Melissa A, Walker Marjorie M, Lynam James, Paul Christine L
Level 3 West, Hunter Medical Research Institute, New Lambton Heights, Newcastle, NSW 2305, Australia.
School of Public Health and Medicine, The University of Newcastle, Callaghan, NSW, Australia.
Palliat Care Soc Pract. 2024 Aug 19;18:26323524241272106. doi: 10.1177/26323524241272106. eCollection 2024.
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.
We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews.
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.
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.
胶质母细胞瘤是一种高级别的原发性脑癌，中位生存期约为14个月。死后脑捐赠为发病机制以及空间和时间异质性提供了见解。死后脑生物样本库项目的数量在不断增加，理解并改善相关的人类体验的需求迫在眉睫。本研究旨在定性探索近亲（NOK）在亲人去世并进行脑捐赠后的经历，并了解此类项目对NOK照顾者的影响。
我们采访了29位在亲人去世并随后进行脑捐赠后的NOK。对转录的定性访谈进行了主题分析。
确定了四个主题；（1）脑捐赠是一个基于利他主义和实用主义的直接决定；（2）支持捐赠者是安慰、自豪和力量的来源；（3）脑捐赠可以为痛苦和悲剧赋予意义；（4）在支持亲人捐赠时对程序和流程的认知。还指出了改进方面的见解，例如在家中亲人去世后运送捐赠者以及尸袋的作用。
支持亲人捐赠大脑可以是一次积极的经历，为NOK提供希望、力量和目标的来源。表明需要考虑的领域的数据与改进未来捐赠者及其亲人的脑捐赠项目的实施广泛相关。
