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

Journal article

Ralph, Angelique F., Chadban, Steven J., Butow, Phyllis, Craig, Johnathan C., Kanellis, John, Wong, Germaine, Logeman, Charlotte and Tong, Allison. (2020). The experiences and impact of being deemed ineligible for living kidney donation : Semi-structured interview study. Nephrology. 25(4), pp. 339-350. https://doi.org/10.1111/nep.13628
AuthorsRalph, Angelique F., Chadban, Steven J., Butow, Phyllis, Craig, Johnathan C., Kanellis, John, Wong, Germaine, Logeman, Charlotte and 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.

Keywordskidney transplantation; live donor; qualitative research
Year2020
JournalNephrology
Journal citation25 (4), pp. 339-350
PublisherJohn Wiley & Sons, Inc.
ISSN1320-5358
Digital Object Identifier (DOI)https://doi.org/10.1111/nep.13628
PubMed ID31257667
Scopus EID2-s2.0-85070274173
Page range339-350
FunderNational Health and Medical Research Council (NHMRC)
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online25 Jul 2019
Publication process dates
Accepted24 Jun 2019
Deposited20 May 2025
Grant IDGNT1093101
1106716
Additional information

© 2019 Asian Pacific Society of Nephrology.

Permalink -

https://acuresearchbank.acu.edu.au/item/91w56/the-experiences-and-impact-of-being-deemed-ineligible-for-living-kidney-donation-semi-structured-interview-study

Log in to edit

Restricted files

Publisher's version

  • 7
    total views
  • 0
    total downloads
  • 7
    views this month
  • 0
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease : A focus group study
Zhang, Yifan, Gutman, Talia, Tong, Allison, Craig, Jonathan C., Sinha, Aditi, Dart, Allison, Eddy, Allison A., Gipson, Debbie S., Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Webb, Nicholas J. A., Alexander, Stephen I., Furth, Susan, Samuel, Susan, Blydt-Hansen, Tom D., Dionne, Janis, Michael, Mini, ... Hanson, Camilla S.. (2023). Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease : A focus group study. Pediatric Nephrology. 38(1), pp. 249-260. https://doi.org/10.1007/s00467-022-05551-z
Management of eating disorders for people with higher weight : Clinical practice guideline
Ralph, Angelique F., Brennan, Leah, Byrne, Sue, Caldwell, Belinda, Farmer, Jo, Hart, Laura M., Heruc, Gabriella A., Maguire, Sarah, Piya, Milan K., Quin, Julia, Trobe, Sarah K., Wallis, Andrew, Williams-Tchen, A. J. and Hay, Phillipa. (2022). Management of eating disorders for people with higher weight : Clinical practice guideline. Journal of Eating Disorders. 10(1), p. Article 121. https://doi.org/10.1186/s40337-022-00622-w
Living kidney donor and recipient perspectives on their relationship : Longitudinal semi-structured interviews
Ralph, Angelique F., Butow, Phyllis, Craig, Jonathan C., Wong, Germaine, Chadban, Steven J., Luxton, Grant, Gutman, Talia, Hanson, Camilla S., Ju, Angela and Tong, Allison. (2019). Living kidney donor and recipient perspectives on their relationship : Longitudinal semi-structured interviews. BMJ Open. 9(4), p. Article e026629. https://doi.org/10.1136/bmjopen-2018-026629
Research priorities for childhood chronic conditions : A workshop report
Lopez-Vargas, Pamela, Tong, Allison, Crowe, Sally, Alexander, Stephen I., Ha Yuen Caldwell, Patrina, Campbell, Dianne E., Couper, Jennifer, Davidson, Andrew, De, Sukanya, Fitzgerald, Dominic A., Haddad, Suzy, Hill, Sophie, Howell, Martin, Jaffe, Adam, James, Laura J., Ju, Angela, Manera, Karine E., McKenzie, Anne, Morrow, Angie M., ... Craig, Jonathan C.. (2019). Research priorities for childhood chronic conditions : A workshop report. Archives of Disease in Childhood. 104(3), pp. 237-245. https://doi.org/10.1136/archdischild-2018-315628
Clinicians’ attitudes and approaches to evaluating the potential living kidney donor-recipient relationship : An interview study
Ralph, Angelique F., Butow, Phyllis, Craig, Jonathon C., Chapman, Jeremy R., Gill, John S., Kanellis, John and Tong, Allison. (2019). Clinicians’ attitudes and approaches to evaluating the potential living kidney donor-recipient relationship : An interview study. Nephrology. 24(2), pp. 252-262. https://doi.org/10.1111/nep.13238
Identifying important outcomes for young people with CKD and their caregivers : A nominal group technique study
Hanson, Camilla S., Gutman, Talia, Craig, Jonathon C., Bernays, Sarah, Raman, Gayathri, Zhang, Yifan, James, Laura J., Ralph, Angelique F., Ju, Angela, Manera, Karine E., Teixeira-Pinto, Armando, Viecelli, Andrea K., Alexander, Stephen I., Blydt-Hansen, Tom D., Dionne, Janis, McTaggart, Steven, Michael, Mini, Walker, Amanda, Carter, Simon, ... Tong, Allison. (2019). Identifying important outcomes for young people with CKD and their caregivers : A nominal group technique study. American Journal of Kidney Diseases. 74(1), pp. 82-94. https://doi.org/10.1053/j.ajkd.2018.12.040
Patient-reported outcome measures for life participation in kidney transplantation : A systematic review
Ju, Angela, Chow, Bi Yang, Ralph, Angelique F., Howell, Martin, Josephson, Michelle A., Ahn, Curie, Butt, Zeeshan, Dobbels, Fabienne, Fowler, Kevin, Jowsey-Gregoire, Sheila, Jha, Vivekanand, Locke, Jayme E., Tan, Jane C., Taylor, Quinetta, Rutherford, Claudia, Craig, Jonathon C. and Tong, Allison. (2019). Patient-reported outcome measures for life participation in kidney transplantation : A systematic review. American Journal of Transplantation. 19(8), pp. 2306-2317. https://doi.org/10.1111/ajt.15267
Identifying outcomes that are important to living kidney donors : A nominal group technique study
Hanson, Camilla S., Chapman, Jeremy R., Gill, John S., Kanellis, John, Wong, Germaine, Craig, Jonathon C., Teixeira-Pinto, Armando, Chadban, Steve J., Garg, Amit X., Ralph, Angelique F., Pinter, Jule, Lewis, Joshua R. and Tong, Allison. (2018). Identifying outcomes that are important to living kidney donors : A nominal group technique study. Clinical Journal of the American Society of Nephrology. 13(6), pp. 916-926. https://doi.org/10.2215/CJN.13441217
Child and parental perspectives on communication and decision making in pediatric CKD : A focus group study
Gutman, Talia, Hanson, Camilla S., Bernays, Sarah, Craig, Jonathan C., Sinha, Aditi, Dart, Allison, Eddy, Allison A., Gipson, Debbie S., Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Webb, Nicholas J. A., Alexander, Stephen I., Goldstein, Stuart L., Furth, Susan, Samuel, Susan, Blydt-Hansen, Tom, Dionne, Janis, ... Tong, Allison. (2018). Child and parental perspectives on communication and decision making in pediatric CKD : A focus group study. American Journal of Kidney Diseases. 72(4), pp. 547-559. https://doi.org/10.1053/j.ajkd.2018.05.005
Patient-reported outcome measures for fatigue in patients on hemodialysis : A systematic review
Ju, Angela, Unruh, Mark L., Davison, Sara N., Dapueto, Juan, Dew, Mary Amanda, Fluck, Richard, Germain, Michael, Jassal, Sarbjit Vanita, Obrador, Gregorio, O'Donoghue, Donal, Tugwell, Peter, Craig, Jonathon C., Ralph, Angelique F., Howell, Martin and Tong, Allison. (2018). Patient-reported outcome measures for fatigue in patients on hemodialysis : A systematic review. American Journal of Kidney Diseases. 71(3), pp. 327-343. https://doi.org/10.1053/j.ajkd.2017.08.019
Donor and recipient views on their relationship in living kidney donation : Thematic synthesis of qualitative studies
Ralph, Angelique F., Butow, Phyllis, Hanson, Camilla S., Chadban, Steven J., Chapman, Jeremy R., Craig, Jonathan C., Kanellis, John, Luxton, Grant and Tong, Alison. (2017). Donor and recipient views on their relationship in living kidney donation : Thematic synthesis of qualitative studies. American Journal of Kidney Diseases. 69(5), pp. 602-616. https://doi.org/10.1053/j.ajkd.2016.09.017