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The experiences and impact of being deemed ineligible for living kidney donation : Semi-structured interview study
Ralph, Angelique F. Chadban, Steven J. Butow, Phyllis Craig, Johnathan C. Kanellis, John Wong, Germaine Logeman, Charlotte Tong, Allison
Ralph, Angelique F.
Chadban, Steven J.
Butow, Phyllis
Craig, Johnathan C.
Kanellis, John
Wong, Germaine
Logeman, Charlotte
Tong, Allison
Abstract
Aim
We aimed to describe the impact and experience of being deemed ineligible as a living kidney donor.
Methods
Semi-structured interviews were conducted with 27 ineligible donor candidates. Transcripts were analysed thematically.
Results
Seven themes were identified: deriving health and relationship benefits in the process (strengthening emotional connection, identifying problematic health conditions); devastating loss and disappointment (harbouring guilt over personal failings, shattering confidence and hope, undermining relationships with extended family and friends, disrupting home dynamics); constrained within a rigid system (denied autonomy, resorting to other avenues); acknowledging as matter of fact (accepting the clinical decision, reassured by preventing a poor outcome); reluctant to relinquish the donor identity (unable to fulfil family duty, having the donor role stolen, holding onto other opportunities to donate); uncertainty in unpredictability, inconsistency and ambiguities (frustrated by inefficiencies, questioning clinician motivation, suspended donor status, unfairness in changeable eligibility criteria, unresolved concerns and questions of own health); and abandoned in despair (lacking practical support to meet eligibility criteria, ill prepared for rejection, dismissed and discarded by the system).
Conclusion
Being deemed unsuitable for donation took an emotional toll on ineligible donor candidates who felt immense guilt for ‘failing’ the potential recipient. Ineligible donor candidates were frustrated and angry with the perceived lack of support from clinicians and rigidity of the evaluation process. Informing potential donors of available services, including psychological support, communicating the decision sensitively and with sufficient time, and full disclosure of their health status, may contribute to improved adjustment following the ineligibility decision.
Keywords
kidney transplantation, live donor, qualitative research
Date
2020
Type
Journal article
Journal
Nephrology
Book
Volume
25
Issue
4
Page Range
339-350
Article Number
ACU Department
School of Behavioural and Health Sciences
Faculty of Health Sciences
Faculty of Health Sciences
Relation URI
Source URL
Event URL
Open Access Status
License
All rights reserved
File Access
Controlled
Notes
© 2019 Asian Pacific Society of Nephrology.