2013 - ISODP 2013 Congress


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Oral Presentation 11 on Intensive Care and Donation

23.9 - Family perspectives on organ and tissue donation for transplantation: thematic synthesis of qualitative studies

Presenter: Angelique, Ralph, Sydney, Australia
Authors: Allison Tong, Jeremy Chapman, Jonathan Gillis, Jonathan Craig, Phyllis Butow, Kirsten Howard, Michelle Irving, Bernadet Sutanto, Angelique Ralph

Family perspectives on organ and tissue donation for transplantation: thematic synthesis of qualitative studies

Allison Tong1,2, Jeremy Chapman3, Jonathan Gillis4, Jonathan Craig1,2, Phyllis Butow5, Kirsten Howard1, Michelle Irving1,2, Bernadet Sutanto1,2, Angelique Ralph1,2

1Sydney School of Public Health, The University of Sydney, Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia, 3Centre for Transplant and Renal Research, Westmead Hospital, Sydney, Australia, 4Centre for Values, Ethics and Law in Medicine, The University of Sydney, Sydney, Australia, 5Centre for Medical Psychology & Evidence-based Decision-making, The University of Sydney, Sydney, Australia

 

Background: A contributing factor to the critical shortage of deceased organ donors is family refusal to give consent, or veto a prior decision of the donor. We aimed to describe the beliefs and views of donor families on organ and tissue donation.

Methods: We conducted a systematic review and synthesis of qualitative studies on family perspectives on organ and tissue donation for transplantation. Electronic databases were searched to September 2012.

Results: Thirty-four studies involving 1,035 participants were included. We identified seven themes: comprehension of unexpected death (including sub-themes of accepting finality of life, ambiguity of brain death); finding meaning in donation (altruism, letting the donor live on, fulfilling a moral obligation, easing grief); fear and suspicion (financial motivations, unwanted responsibility of death, medical mistrust); decisional conflict (pressured decision-making, family involvement and consensus, internal dissonance, adhering to religious beliefs); vulnerability (valuing sensitivity and rapport, overwhelmed and disempowered); respecting the donor (honouring the donor wishes, preserving body integrity); and needing closure (appreciating acknowledgement, regret over refusal, unresolved decisional uncertainty, feeling dismissed).

Conclusions: Bereaved families can derive emotional benefit from the “lifesaving” act of donation but also report a sense of uncertainty about death and the donation process, vulnerability, an acute emotional and cognitive burden, and pre- and post-decisional dissonance. Education and counselling strategies are needed to help families understand and accept death in the context of donation, address anxieties about organ procurement, foster trust in the donation process, resolve insecurities and tensions in their decision-making, and gain a sense of closure after donation. This may improve family experiences and decision making in organ donation.


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