title: Family perspectives on deceased organ donation: thematic synthesis of qualitative studies.
abstract: 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.
authors.affiliation: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
authors.forename: A
authors.initials: A
authors.lastname: Ralph
authors.forename: J R
authors.initials: JR
authors.lastname: Chapman
authors.forename: J
authors.initials: J
authors.lastname: Gillis
authors.forename: J C
authors.initials: JC
authors.lastname: Craig
authors.forename: P
authors.initials: P
authors.lastname: Butow
authors.forename: K
authors.initials: K
authors.lastname: Howard
authors.forename: M
authors.initials: M
authors.lastname: Irving
authors.forename: B
authors.initials: B
authors.lastname: Sutanto
authors.forename: A
authors.initials: A
authors.lastname: Tong
mesh_terms: D000533:Altruism; D003643:Death; D003657:Decision Making; D005190:Family / Q000523:psychology*; D006801:Humans; D007398:Interpersonal Relations; D009042:Motivation; D016377:Organ Transplantation; D011379:Prognosis; D036301:Qualitative Research; D009927:Tissue and Organ Procurement / Q000639:trends*
keywords: Deceased donor; family; organ and tissue donation; qualitative research