A qualitative study exploring the process of postmortem brain tissue donation after suicide

Abstract

Access to postmortem brain tissue can be valuable in refining knowledge on the pathophysiology and genetics of neuropsychiatric disorders. Obtaining postmortem consent for the donation after death by suicide can be difficult, as families may be overwhelmed by a violent and unexpected death. Examining the process of brain donation can inform on how the request can best be conducted. This is a qualitative study with in-depth interviews with forty-one people that were asked to consider brain donation—32 who had consented to donation and 9 who refused it. Data collection and analyses were carried out according to grounded theory. Five key themes emerged from data analysis: the context of the families, the invitation to talk to the research team, the experience with the request protocol, the participants’ assessment of the experience, and their participation in the study as an opportunity to heal. The participants indicated that a brain donation request that is respectful and tactful can be made without adding to the family distress brought on by suicide and pondering brain donation was seen as an opportunity to transform the meaning of the death and invest it with a modicum of solace for being able to contribute to research.