Background: A contributing factor to the shortage of deceased organ donors is family refusal to give consent, or veto a prior decision of the donor. To better understand and support the decision-making processes for families, this study aims to synthesize studies on 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 and reference lists were searched to September 2012. Thematic synthesis of the results and conclusions in each study was performed.

Results: Thirty-one studies involving 1,872 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).

Conclusion: Bereaved families can derive emotional benefit from the “lifesaving” act of donation but also report an overwhelming 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 can potentially improve family experiences and decision making in organ donation.

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