TY - JOUR
T1 - The experiences and impact of being deemed ineligible for living kidney donation
T2 - Semi-structured interview study
AU - Ralph, Angelique F.
AU - Chadban, Steve J.
AU - Butow, Phyllis
AU - Craig, Jonathan C.
AU - Kanellis, John
AU - Wong, Germaine
AU - Logeman, Charlotte
AU - Tong, Allison
PY - 2020/4/1
Y1 - 2020/4/1
N2 - 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.
AB - 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.
KW - kidney transplantation, live donor
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85070274173&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1093101
UR - http://purl.org/au-research/grants/NHMRC/1106716
U2 - 10.1111/nep.13628
DO - 10.1111/nep.13628
M3 - Article
C2 - 31257667
AN - SCOPUS:85070274173
VL - 25
SP - 339
EP - 350
JO - Nephrology
JF - Nephrology
SN - 1320-5358
IS - 4
ER -