Families’ reflections on the process of brain donation following coronial autopsy

Abstract

This study aims to explore families’ reflections on their decision to donate brain tissue to the NSW Tissue Resource Centre (NSW TRC), Australia. Specifically, the study aims to investigate respondents’ initial reactions to the request for donation, primary reasons for their decision, and subsequent satisfaction levels. Participants were next-of-kin (NOK) contacted between May 2002 and May 2008, on the day of their relative’s autopsy, who agreed to donate brain tissue to the NSW TRC for medical research. All 111 NOK were invited to participate, and those who agreed completed an anonymous questionnaire. Fifty completed questionnaires were received. Results showed that 74% of respondents were not upset by the donation call and 98% were satisfied with their decision to donate. Of the 22% who reported having been upset, many indicated that their distress was partly related to their circumstances. When asked the main reason for their donation, 66% had wanted to help others, or help research, while 24% stated their primary reason as a belief that they were respecting the wishes of their deceased relative. These findings show that NOK are not further distressed by being asked to donate brain tissue, give altruistic reasons for consent and are satisfied with the decision they made. In both this study and previous literature, the importance of discussion about organ donation amongst relatives is a recurring theme. Knowledge about a relative’s wishes is likely to help facilitate decision-making, overcoming at least one crucial barrier to lifting rates of organ donation for transplantation and research.

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Acknowledgments

This work was supported by the Schizophrenia Research Institute, utilising infrastructure funding from NSW Health. The New South Wales Tissue Resource Centre at The University of Sydney is supported by the National Health and Medical Research Council of Australia, the Schizophrenia Research Institute, and the National Institute of Alcohol Abuse and Alcoholism (NIH (NIAAA) R24AA012725). We wish to thank Ian Bishop for his assistance with the data analysis for this study, and for his comments during manuscript development. We also extend our sincere appreciation to the Department of Forensic Medicine, Glebe, and the NSW State Coroner’s Court. On behalf of the current members of the NSW TRC we would like to acknowledge the efforts of previous staff, and the kind support of family members who generously donated tissue.

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Correspondence to Nina Sundqvist.

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Sundqvist, N., Garrick, T. & Harding, A. Families’ reflections on the process of brain donation following coronial autopsy. Cell Tissue Bank 13, 89–101 (2012). https://doi.org/10.1007/s10561-010-9233-1

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Keywords

  • Organ
  • Brain
  • Donation
  • Coronial
  • Distress
  • Satisfaction