The experiences and impact of being deemed ineligible for living kidney donation: Semi-structured interview study

Angelique F. Ralph, Steve J. Chadban, Phyllis Butow, Jonathan C. Craig, John Kanellis, Germaine Wong, Charlotte Logeman, Allison Tong

Research output: Contribution to journalArticleResearchpeer-review

3 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)339-350
Number of pages12
JournalNephrology
Volume25
Issue number4
DOIs
Publication statusPublished - 1 Apr 2020

Keywords

  • kidney transplantation, live donor
  • qualitative research

Cite this

Ralph, A. F., Chadban, S. J., Butow, P., Craig, J. C., Kanellis, J., Wong, G., Logeman, C., & Tong, A. (2020). The experiences and impact of being deemed ineligible for living kidney donation: Semi-structured interview study. Nephrology, 25(4), 339-350. https://doi.org/10.1111/nep.13628