title: 'Suspended in a paradox'-patient attitudes to wait-listing for kidney transplantation: systematic review and thematic synthesis of qualitative studies.
abstract: Patients on waiting lists for kidney transplantation have higher mortality rates and have specific anxieties about their eligibility, process, and outcomes of wait-listing. We aimed to describe patient experiences and attitudes to wait-listing for kidney transplantation. Electronic databases were searched to September 2014. Thematic synthesis was used to analyze the findings. From 22 studies (n = 795 patients), we identified six themes: accepting the only option (chance to regain normality, avoiding guilt, impulsive decision-making); maintaining hope (determined optimism, appreciating a fortuitous gift, enduring for optimal outcomes, trust in clinical judgment); burden of testing (strenuous commitment, losing the battle, medical mistrust); permeating vulnerability (eligibility enigma, being threatened, angst of timing uncertainty, desperate urgency, living in limbo, spiraling doubt and disappointment, residual ambivalence); deprived of opportunity (unfairly dismissed, unexpected disqualification, self-resignation and acceptance, jealousy, suspicious of inequity); and moral guilt (awaiting someone's death, questioning deservingness). The waiting list offered hope of restored normality. However, the demands of workup, uncertainty about eligibility, and waiting times that exceeded expectations impelled patients to disillusionment, despair, and suspicion of inequity. Managing patient expectations and ensuring transparency of wait-listing and allocation decisions may allay patient disappointment and skepticism, to improve patient satisfaction and treatment outcomes.
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Camilla S
authors.initials: CS
authors.lastname: Hanson
authors.affiliation: Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia.
authors.forename: Jeremy R
authors.initials: JR
authors.lastname: Chapman
authors.affiliation: Department of Nephrology, Charité - Universitätsmedizin Berlin, Berlin, Germany.
authors.forename: Fabian
authors.initials: F
authors.lastname: Halleck
authors.affiliation: Department of Nephrology, Charité - Universitätsmedizin Berlin, Berlin, Germany.
authors.forename: Klemens
authors.initials: K
authors.lastname: Budde
authors.affiliation: Department of Medicine, The University of Chicago, Chicago, IL, USA.
authors.forename: Michelle A
authors.initials: MA
authors.lastname: Josephson
authors.affiliation: Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.|Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
mesh_terms: D001294:Attitude to Health; D006801:Humans; D016030:Kidney Transplantation / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D014850:Waiting Lists
keywords: kidney transplantation; patient-centered care; qualitative research; quality of life; wait-listing