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Banking on brains: insights of brain donor relatives and friends from an experiential perspective

Eatough, Virginia and Shaw, K. and Lees, A.J. (2012) Banking on brains: insights of brain donor relatives and friends from an experiential perspective. Psychology & Health 27 (11), pp. 1271-1290. ISSN 0887-0446.

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Official URL: http://dx.doi.org/10.1080/08870446.2012.669480

Abstract

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.

Item Type: Article
Keyword(s) / Subject(s): brain donation, emotions, experiential, decision making, thematic analysis
School or Research Centre: Birkbeck Schools and Research Centres > School of Science > Psychological Sciences
Depositing User: Administrator
Date Deposited: 24 Apr 2012 11:24
Last Modified: 17 Apr 2013 12:22
URI: http://eprints.bbk.ac.uk/id/eprint/4727

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