July 30, 2024

Supporting a loved one with brain cancer to donate their brain: A qualitative study

We are delighted to share this qualitative study conducted by Biobanking and Clinical Research Manager, Cassandra Griffin which was recently published on Oxford Academic.

Full Paper Published on Oxford Academic

Abstract

Background

Brain cancer is a devastating and incurable disease that places a high burden of care on next of kin (NOK). NOK can play a core role in supporting end-of-life planning, including the decision to donate one’s brain after death. Postmortem brain donation is crucial to research. As postmortem programs develop it is important to understand the experiences of NOK as they support a loved one in the donation decision.

Methods

Thirteen qualitative interviews were completed with NOK of people who had consented to donate their brains to the Mark Hughes Foundation (MHF) Biobank. A thematic analysis was carried out on the transcribed interviews.

Results

Four central themes were identified: (i) The carer role has additional responsibilities and psychological benefits when brain donation is being considered; (ii) Supporting a loved one to donate requires mutual trust, understanding, and a commitment to honor agency; (iii) Increasing awareness of brain donation is a priority for NOK, and (iv) Brain donation is seen as a natural continuation of the donor’s altruistic values.

Conclusions

When a person with brain cancer decides to donate their brain to research, their NOK can experience additional burdens and benefits as the NOK–patient relationship evolves. Understanding this evolution and recognizing the importance of trust, advocacy, and altruism provides a guide for the integration of brain donation programs into clinical pathways and a basis for normalizing brain donation as an extension of organ donation frameworks.

Donate today & help beat brain cancer

Brain cancer is the leading cause of cancer death in children, and adults aged under 40 in Australia, yet alarmingly very little is known about brain cancer, its causes or how it is treated.

That’s why we need your help. Every dollar helps in the fight against brain cancer. Your donation will go towards vital research to improve patient treatments and, hopefully, find a cure one day.

All donations of $2 or more are tax deductible.

Donate today, help beat brain cancer

Brain cancer is the leading cause of cancer death in children, and adults aged under 40 in Australia, yet alarmingly very little is known about brain cancer, its causes or how it is treated.

That’s why we need your help. Every dollar helps in the fight against brain cancer. Your donation will go towards vital research to improve patient treatments and, hopefully, find a cure one day.

All donations of $2 or more are tax deductible.

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