“At that moment, understanding the donation is crucial to make a decision”:A qualitative study exploring the process of postmortem brain tissue donation after suicide

Abstract

Background: The direct examination of postmortem brain tissue can provide valuable help in refining knowledge on the pathophysiology and genetics of neuropsychiatric disorders. Obtaining postmortem consent for the donation of brain tissue 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, examining the existing barriers and enhancing communication, to the benefit of proxy donors. Methods: This is a qualitative study, in which we employed in-depth interviews to investigate the donation process. Family members of decedents who were eligible for brain tissue donation were asked to consider the donation; irrespective of their decision, they were invited for an interview on the donation process at least 2 months after the suicide. Data collection and analyses were carried out according to a grounded theory framework, and collection, coding, and theorization occurred simultaneously. Findings: Forty-one people participated in this study, 32 family members who had consented to donation and 9 who refused it. Five key themes emerged from our data analysis: the context of the families of potential donors, 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. We arranged the main categories around 3 central stages of the experience described by participants: before the donation request, the request, and after the request. Conclusions: 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 is viewed in a highly positive lens in the months following the event. Having an adequate understanding of tissue donation for research was crucial for satisfactory decision-making. Meeting with the donation team was considered a chance to talk to mental health professionals about suicide. 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.

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review

“…In the work of Moules et al on paediatric cell lines, parents reported being comforted by the knowledge that their child was ‘living on’ in the tumour cell line [ 11 ] referencing a sense of connection to the culture. This is a sentiment echoed in numerous other studies, both oncology and non-oncology such as Padoan et al [ 31 ] and ties in with broad references throughout the wider brain donation literature to living on and legacy being a primary benefit [ 11 , 12 , 16 , 31 , 49 ].…”

“…Of the 8 studies with data specifically collected from bereaved adult NOK (Eatough 2012, Fonseca 2015, Azizi 2006, Millar 2007, Sundqvist 2012, Garrick 2009, Millar 2008 and Padoan 2021), 4 studies [ 16 , 35 , 39 , 49 ] indicated that NOK in this state see brain donation as a practical focus in their time of grief, providing a sense of control, a distraction and an empowering process enabling them to fulfil a wish. This insight was not noted as a potential benefit in the studies including NOK prior to donation.…”

“…Both in the oncology and non-oncology settings we coded data relating to ‘living on’ through a donation [ 11 , 12 , 16 , 31 , 49 ]. In a non-oncology space, where sense of self could be clearly associated with brain tissue this appears rational–particularly in light of brain exceptionalism, the notion that the brain holds special significance to sense of self [ 63 ].…”