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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Australian Government Organ and Tissue Authority (2009) Organ donation facts & statistics Australia. Australian Government Organ and Tissue Authority. http://www.donatelife.gov.au/Discover/Facts-and-Statistics.html. Accessed 27 Dec 2009
Australian Government Organ and Tissue Authority (2010) Family support. Australian Government Organ and Tissue Authority. http://www.donatelife.gov.au/Discover/Family-support.html. Accessed 8 Oct 2010
Azizi L, Garrick TM, Harper CG (2006) Brain donation for research: strong support in Australia. J Clin Neurosci 13:449–452. doi:10.1016/j.jocn.2005.06.008
Beard J, Ireland L, Davis N, Barr J (2002) Tissue donation: what does it mean to families? Prog Transpl 12:42–48
Bellali T, Papazoglou I, Papadatou D (2007) Empirically based recommendations to support parents facing the dilemma of paediatric cadaver organ donation. Intensive Crit Care Nurs 23:216–225. doi:10.1016/j.iccn.2007.01.002
Bennett R, Savani S (2004) Factors influencing the willingness to donate body parts for transplantation. J Health Soc Policy 18:61–85. doi:10.1300/J045v18n03_04
Charatan F (1999) Pennsylvania plans to reward organ donation. BMJ 318:1371
Floden A, Kelvered M, Frid I, Backman L (2006) Causes why organ donation was not carried out despite the deceased being positive to donation. Transpl Proc 38:2619–2621. doi:10.1016/j.transproceed.2006.07.031
Garrick T, Sundqvist N, Dobbins T, Azizi L, Harper C (2009) Factors that influence decisions by families to donate brain tissue for medical research. Cell Tissue Bank 10:309–315. doi:10.1007/s10561-009-9136-1
George A (2005) Marketing humanity—should we allow the sale of human body parts? University of Technology, Sydney Law Review. http://www.austlii.edu.au/au/journals/UTSLRev/2005/2.html#Heading187. Accessed 8 Oct 2010
Glaw XM, Garrick TM, Terwee PJ, Patching JR, Blake H, Harper C (2009) Brain donation: who and why? Cell Tissue Bank 10:241–246. doi:10.1007/s10561-009-9121-8
Lions NSW-ACT Save Sight Foundation (2009) Latest news from the foundations. Lions NSW-ACT Save Sight Foundation. http://www.lionssavesightfoundation.org.au/latestnews.htm. Accessed 22 Dec 2009
Mandell MS, Zamudio S, Seem D, McGaw LJ, Wood G, Liehr P et al (2006) National evaluation of healthcare provider attitudes toward organ donation after cardiac death. Crit Care Med 34:2952–2958. doi:10.1097/01.CCM.0000247718.27324.65
Millar T, Walker R, Arango JC, Ironside JW, Harrison DJ, MacIntyre DJ et al (2007) Tissue and organ donation for research in forensic pathology: the MRC Sudden Death Brain and Tissue Bank. J Pathol 213:369–375. doi:10.1002/path.2247
NSW Department of Health (2010) The facts about the NSW RTA Registry. NSW Department of Health. http://www.health.nsw.gov.au/publichealth/otds/facts.asp. Accessed 16 Jan 2010
NSW Tissue Resource Centre (2009) ‘Using our brains’—about us. NSW Tissue Resource Centre. http://www.braindonors.org/. Accessed 21 Dec 2009
Ormrod JA, Ryder T, Chadwick RJ, Bonner SM (2005) Experiences of families when a relative is diagnosed brain stem dead: understanding of death, observation of brain stem death testing and attitudes to organ donation. Anaesthesia 60:1002–1008. doi:10.1111/j.1365-2044.2005.04297.x
Radecki CM, Jaccard J (1997) Psychological aspects of organ donation: a critical review and synthesis of individual and next-of-kin donation decisions. Health Psychol 16:183–195
Regehr C, Kjerulf M, Popova SR, Baker AJ (2004) Trauma and tribulation: the experiences and attitudes of operating room nurses working with organ donors. J Clin Nurs 13:430–437
Sade RM (1999) Cadaveric organ donation: rethinking donor motivation. Arch Intern Med 159:438–442
Siminoff LA, Gordon N, Hewlett J, Arnold RM (2001) Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 286:71–77
Snowbeck C (2002) Organ donor funeral aid scrapped. PG Publishing Co., Inc. http://www.post-gazette.com/healthscience/20020201donors0201p2.asp. Accessed 6 Oct 2010
Sque M, Payne S, Vlachonikolis I (2000) Cadaveric donotransplantation: nurses’ attitudes, knowledge and behaviour. Soc Sci Med 50:541–552
Stevens M (1998) Factors influencing decisions about donation of the brain for research purposes. Age Ageing 27:623–629
Transplant Australia (2009) The facts about donation. Transplant Australia Ltd. http://www.transplant.org.au/The-Facts-About-Donation.html. Accessed 21 Dec 2009
Van Gelder F, Manyalich M, Costa AN, Paez G (2010) IRODat 2009 international donation and transplantation activity. Organs Tissues Cells 13:5–8
Wakeford RE, Stepney R (1989) Obstacles to organ donation. Br J Surg 76:435–439
West R, Burr G (2002) Why families deny consent to organ donation. Aust Crit Care 15:27–32
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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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