Family perspectives on deceased organ donation: Thematic synthesis of qualitative studies

Angelique Ralph, Jeremy Chapman, Jonathan Gillis, Jonathan Craig, Phyllis Butow, Kirsten Howard, Michelle Irving, Bernadet Sutanto, Allison Tong

Research output: Contribution to journalArticlepeer-review

74 Citations (Scopus)


A major barrier to meeting the needs for organ transplantation is family refusal to give consent. This study aimed to describe the perspectives of donor families on deceased donation. We conducted a systematic review and thematic synthesis of qualitative studies. Electronic databases were searched to September 2012. From 34 studies involving 1035 participants, we identified seven themes: comprehension of sudden death (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 for death, medical mistrust); decisional conflict (pressured decision making, family consensus, internal dissonance, religious beliefs); vulnerability (valuing sensitivity and rapport, overwhelmed and disempowered); respecting the donor (honoring the donor's wishes, preserving body integrity) and needing closure (acknowledgment, regret over refusal, unresolved decisional uncertainty, feeling dismissed). Bereaved families report uncertainty about death and the donation process, emotional and cognitive burden and decisional dissonance, but can derive emotional benefit from the "lifesaving" act of donation. Strategies are needed to help families understand death in the context of donation, address anxieties about organ procurement, foster trust in the donation process, resolve insecurities in decision making and gain a sense of closure.

Original languageEnglish
Pages (from-to)923-935
Number of pages13
JournalAmerican Journal of Transplantation
Issue number4
Publication statusPublished - Apr 2014


  • Deceased donor
  • family
  • organ and tissue donation
  • qualitative research


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