Attitudes to brain donation for Parkinson's research and how to ask: A qualitative study with suggested guidelines for practice

Clare Elizabeth Harris (Corresponding Author), Alice Marian Kiger, Carl Edward Counsell

Research output: Contribution to journalArticle

10 Citations (Scopus)

Abstract

Aim
To describe factors people consider important in deciding whether or not to donate their brain for research after death.
Background
Brain tissue retrieved at post-mortem is needed to further research into neurological conditions such as Parkinson's disease. Previous research has focussed mainly on attitudes to organ donation for transplantation.
Design
Data were gathered and analysed using a qualitative approach based on grounded theory.
Methods
Nineteen people who had made a decision about brain donation, five people with Parkinson's and 14 unaffected individuals, were identified through theoretical sampling. Interviews conducted between September 2007–January 2008 were analysed to identify themes representing the concerns of participants, when making a decision.
Findings
The three main themes identified were views and beliefs about post-mortem, the importance of family and the things people do not talk about. Although participants were more familiar with the concept of organ donation for transplantation, unanimous support was expressed for brain donation for research. However, beliefs about death and post-mortem, influence of family and the difficulty in talking and thinking about things to do with death all posed barriers to consent when actually asked to make a decision. For some, however, being asked had acted as a catalyst, transforming previously held positive attitudes into a decision to consent.
Conclusion
Guidelines for asking developed from these findings highlight the importance of discussing the issue to raise awareness in potential donors, involving family members, and giving accurate and appropriate information to inform, reassure and to dispel misconceptions.
Original languageEnglish
Pages (from-to)1096-1108
Number of pages13
JournalJournal of Advanced Nursing
Volume69
Issue number5
Early online date24 Jul 2012
DOIs
Publication statusPublished - May 2013

Keywords

  • attitudes
  • consent
  • decision-making
  • neurology
  • nurse patient-interaction
  • nurses
  • nursing
  • qualitative approaches

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  • Datasets

    Parkinsonism Incidence in North East Scotland (PINE) study database

    Counsell, C. (Owner), Wilde, K. (Creator) & Ritchie, D. M. (Data Manager), University of Aberdeen, 1 Apr 2009

    Dataset

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