“I’m standing next to him, I’m supporting him”—Supporting a loved one with brain cancer to donate their brain: A qualitative study

Abstract

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.