Living kidney donor and recipient perspectives on their relationship : Longitudinal semi-structured interviews

Journal article


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
AuthorsRalph, Angelique F., Butow, Phyllis, Craig, Jonathan C., Wong, Germaine, Chadban, Steven J., Luxton, Grant, Gutman, Talia, Hanson, Camilla S., Ju, Angela and Tong, Allison
Abstract

Background and objectives
Many donors and recipients report an improved bond posttransplantation; however, unexpected conflicts and tension may also occur. Insights into the lived experiences of the donor–recipient relationship can inform strategies for interventions and support. We aimed to describe donor and recipient expectations and experiences of their relationship before and after living kidney donor transplantation.

Design, setting and participants
Semistructured interviews were conducted with 16 donor–recipient pairs before the transplant and 11–14 months post-transplant. Transcripts were analysed thematically.

Results
We identified seven themes (with respective subthemes): donation as enacting familial responsibility for care; analytical decision making to mitigate regret (avoiding anticipated regret and maintaining control, removing emotional impulsivity); strengthened interpersonal ties (gaining a deeper appreciation among family members, stronger empathy for each other, improving social participation); instability of relational impacts (anger and aggression threatening dynamics, unanticipated stress and emotional lability, triggering familial tension); renegotiating social roles (unexpected continuation of caregiving responsibilities, inability to relinquish the caregiving role, disappointment with unfulfilled renewal of intimacy, dissatisfaction over discrepant energy levels); guilt over unmet expectations and inevitability of the gift relationship (vague and transient indebtedness, expectation of reciprocity, transferring kidney ownership).

Conclusions
Donor–recipient relationships may be improved through increased empathy, appreciation, and ability to participate in life together; however, unfulfilled expectations and behavioural and emotional changes in recipients (a side effect related to immunosuppression) remain unresolved consequences of living kidney donor transplantation. Education and counselling to help donors and recipients adjust to potential changes in relationship dynamics may help protect and foster relational stability postdonation.

Year2019
JournalBMJ Open
Journal citation9 (4), p. Article e026629
PublisherBMJ Publishing Group
ISSN2044-6055
Digital Object Identifier (DOI)https://doi.org/10.1136/bmjopen-2018-026629
PubMed ID30948607
Scopus EID2-s2.0-85063968329
PubMed Central IDPMC6500358
Open accessPublished as ‘gold’ (paid) open access
Page range1-12
FunderAustralian Research Council (ARC)
National Health and Medical Research Council (NHMRC)
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online04 Apr 2019
Publication process dates
Accepted13 Feb 2019
Deposited26 May 2025
ARC Funded ResearchThis output has been funded, wholly or partially, under the Australian Research Council Act 2001
Grant IDDE120101710
1093101
1106716
Additional information

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Permalink -

https://acuresearchbank.acu.edu.au/item/91wz9/living-kidney-donor-and-recipient-perspectives-on-their-relationship-longitudinal-semi-structured-interviews

Download files


Publisher's version
OA_Ralph_2019_Living_kidney_donor_and_recipient_perspectives.pdf
License: CC BY-NC 4.0
File access level: Open

  • 6
    total views
  • 3
    total downloads
  • 6
    views this month
  • 3
    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
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 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
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