Angelique F Ralph1,2, Steve J Chadban3,4, Phyllis Butow1,5,6, Jonathan C Craig7, John Kanellis8, Germaine Wong2,9, Charlotte Logeman2,9, Allison Tong2,9. 1. School of Psychology, The University of Sydney, Sydney, New South Wales, Australia. 2. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. 3. Kidney Node, Charles Perkins Centre, The University of Sydney, Camperdown, New South Wales, Australia. 4. Renal Medicine, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia. 5. Psycho-oncology Co-operative Research Group, The University of Sydney, Sydney, New South Wales, Australia. 6. Centre for Medical Psychology & Evidence-based Decision-making, The University of Sydney, Sydney, New South Wales, Australia. 7. College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia. 8. Department of Nephrology, Monash Health and Centre for Inflammatory Diseases, Department of Medicine, Monash University, Melbourne, Victoria, Australia. 9. Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
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.
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.
Authors: Steven Habbous; Lianne Barnieh; Kenneth Litchfield; Susan McKenzie; Marian Reich; Ngan N Lam; Istvan Mucsi; Ann Bugeja; Seychelle Yohanna; Rahul Mainra; Kate Chong; Daniel Fantus; G V Ramesh Prasad; Christine Dipchand; Jagbir Gill; Leah Getchell; Amit X Garg Journal: Clin J Am Soc Nephrol Date: 2020-09-24 Impact factor: 8.237
Authors: Christopher P Dwyer; Helen McAneney; Fionnuala M Rogers; Robert Joyce; Sinéad M Hynes Journal: BMC Med Res Methodol Date: 2021-11-27 Impact factor: 4.615
Authors: Sarah E Van Pilsum Rasmussen; Miriam Robin; Amrita Saha; Anne Eno; Romi Lifshitz; Madeleine M Waldram; Samantha N Getsin; Nadia M Chu; Fawaz Al Ammary; Dorry L Segev; Macey L Henderson Journal: Transplant Direct Date: 2020-11-10