U.S. flag

An official website of the United States government

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Avrami C, Liossatou A, Ho TM, editors. Current Strategies for Living Donor Kidney Transplantation [Internet]. Hergiswil (CH): European Dialysis and Transplant Nurses Association/European Renal Care Association (EDTNA/ERCA); 2021.

Cover of Current Strategies for Living Donor Kidney Transplantation

Current Strategies for Living Donor Kidney Transplantation [Internet].

Show details

CHAPTER 6Psychological aspects of care in living donor kidney transplantation

, BSc (Hons), D.Clin.Psychol., PG Dip CT and , BSc (Hons), D.Clin.Psychol.

Author Information

Learning objectives:

  1. To develop understanding of psychological factors in living kidney donation
  2. To gain knowledge of psychological assessment for live donation
  3. To describe intervention pre- and post-donation

Introduction

Consideration of psychological factors is essential throughout the process of live kidney donation for donor and recipient. Research shows donor psychological outcome is largely positive with donors reporting similar rates of quality of life, depression and anxiety as controls or the general population, limited regret and no change or improvement in self-esteem and relationship with the recipient.14 Donors may also benefit from improvements in quality of life as a couple or family post-transplant.5,6 However, it is also important to note that some donors have been found to experience residual difficulties such as depression, anxiety, stress, health worries, regret and some negative impact on their relationship with the recipient.1,6-8 Whilst physical benefits for the recipient are likely to be greater than for the donor, transplantation is major surgery and involves significant physical and psychological adjustment.9,10

Psychological and emotional support, including long term follow up should be integral to multidisciplinary delivery of care in order to maximize positive psychological outcome for both donors and recipients.3,9 Some services have embedded specialist psychological input whilst others may need to access this externally.

Assessment

Psychological assessment of donors and recipients is complex and involves consideration of a multitude of factors. Comprehensive assessment helps to support decision-making, identify psychological contraindications to donation and recognize individuals who may require increased psychological support. Discussions with prospective donors and recipients should highlight the potential range of psychological and emotional factors, which can also help to manage expectations.3,11

Donor: Tools such as the Living Donor Assessment Tool (LDAT)12 and the ELPAT living organ donor Psychosocial Assessment Tool (EPAT)13 have been developed to offer evidence-based frameworks for psychological assessment of live donors. The use of such frameworks can increase consistency in donor psychological assessment across transplant centres which has been highlighted as a need.8 These assessment tools cover areas such as: expectations, feelings about donation, commitment, motives, mental/cognitive capacity, coercion, stability in life, conflicts in relationship, legality, psychiatric disorder/substance misuse, knowledge, social support, socio-economic factors and nonverbal observations. It is also important to provide support for prospective donors who are turned down or who choose not to continue.8,14

Recipient: Many factors included in donor assessment tools are also relevant in recipient assessment. Additional recipient factors to consider include adherence issues, the complexities of finding a donor, family/relationship dynamics, feelings of guilt, perceived pressure for successful outcome and managing difficult feelings if this is not the case.6,15,16

Intervention pre-donation

The early stages of considering live donation can raise many emotions for both donors and recipients.3 Initial decisions as to whether to pursue live donation and raising the idea with family and friends can bring challenges for recipients.3 Perceptions of the potential impact on their relationship with the donor can be a significant factor in the recipient's decision-making process.5 Distress or upset may also be felt by those who do not have available or forthcoming donors. Psychological input may be required to support recipients through these processes. Decision-making for donors may also raise anxieties, doubts or concerns. Donor assessment (above) can be an important part of this process and additional support may be required before or during the workup. Ralph et al.6 have highlighted the need to assess the donor-recipient relationship throughout the process and provide appropriate support both pre- and post-donation.

Support may be required with issues such as weight loss or other lifestyle changes to be accepted for surgery. Specific psychological difficulties such as anxiety, procedural distress, adherence difficulties or depression may require specialist psychological intervention before donation can proceed. During assessment and pre-donation, it is also important to develop a post donation support plan, particularly where historic or current psychological issues have been identified.8

Studies have identified that some donors who had withdrawn or were found to be unsuitable for live donation reported negative psychological impact. Services can respond by managing expectations from the start, ensuring such endings are well managed, communicating clearly and sensitively, sending a letter of acknowledgement, providing opportunities to discuss the psychological impact and help in accessing specialist support where required.11,17

Follow-up/long-term factors

Post-transplant donor and recipient follow-up should include assessment of psychological wellbeing and signposting for additional support where required.3,8,18,19 Some issues may be difficult for people to articulate due to feelings of guilt or shame and these discussions need to be approached sensitively. Specific concerns to consider when reviewing donors and recipients include:

Donor:1,3, 6-8

  • Reduced quality of life
  • Higher levels of fatigue
  • Relationship changes
  • Anxiety
  • Depression
  • Stress and worries about health
  • Regret
  • Potential for psychological difficulties where there are negative outcomes for the recipient

Recipient:3,6,20,21

  • Adherence
  • Adjusting to new medications
  • Anxiety
  • Depression
  • Sleep problems
  • Cognitive impairment
  • Relationship issues
  • Guilt/feeling indebted
  • Lack of family support

In their systematic review, De Pasquale et al.21 highlight that psychological support for recipients pre- and post-transplant can increase adherence and reduce the possibility of anxiety and depression after transplant.

Non-directed donors and their recipients may choose to write and/or receive a letter, which can generate mixed emotions and may require support from the transplant team.11,22 Zuchowski et al.11 highlight how lack of a letter or similar can reduce satisfaction with donation in unspecified kidney donors and it is important to manage expectations that this may not occur and may feel difficult.

COVID-19:2325

The impact of the COVID-19 pandemic on both donor and recipient psychological and social wellbeing needs to be considered. Recipients and donors may benefit from additional psychological support with issues such as:

  • Social and financial pressure
  • Reduced access to practical and emotional support
  • Reduced opportunity to discuss their decision to donate with family and friends
  • Anxiety about hospitalization/contracting the virus
  • Coping with cancellation/postponement of surgery

Lack of opportunity for face-to-face connection between donor and recipient also needs to be acknowledged. Whilst these factors are not necessarily a contraindication to donation going ahead, time to consider and discuss these issues and establish support structures is essential.

Implications for Practice

  • Psychological factors should be considered throughout assessment and workup of both donor and recipient, beginning in the early stages of decision-making about live donation.1,3,5,6,8,11-13,16,18,19,21
  • Donor assessment tools such as the EPAT should be used across centres for consistency.8,13,18
  • Access to further specialist psychological support should be available at all stages where required. Plans for post-donation support for both donor and recipient should be made in particular where there is a history of psychological difficulties and routine checks on recipient and donor psychological wellbeing should be made in the short- and longer-term post-donation.1,3,8,18,19,21
  • Attention to the donor-recipient relationship is also important as relationship factors have the potential to be linked to negative psychological experiences pre- and post-donation.3,5,6,18 At times of significant events such as complications for the recipient post-transplant, the psychological needs of both donor and recipient should be checked.1,3, 6-8,18
  • Psychological needs of donors and recipients who withdraw from the live donor process need to be supported.8,11,14,17
  • Multidisciplinary members of Live Donor Teams need to be aware of the range of psychological factors in live kidney donation, communicating sensitively about these with donors and recipients which can help manage expectations3,11,18 and referring for specialist psychological support where required.
  • Training may be required to support Live Donor Teams with the above and services will require appropriate access to specialist psychological support for both donors and recipients. These are important aspects for services to consider in workforce planning.

Conclusion

Consideration of psychological aspects of live kidney donation is an important element of service delivery and impacts on donor/recipient experience and outcome. Appropriate awareness of psychological factors is essential to enable teams to integrate the required screening, assessment, and access to specialist psychological provision.

References

1.
Clemens KKThiessen-Philbrook HParikh CRYang RCKarley MLBoudville Net al. Psychosocial health of living kidney donors: a systematic review. American Journal of Transplantation . 2006;6(12):2965–2977. Available from: [PubMed: 17294524] [CrossRef]
2.
Maple HChilcot JWeinman JMamode N Psychosocial wellbeing after living kidney donation – a longitudinal, prospective study. Transplant International . 2017;30(10):987–1001. Available from: [PubMed: 28445627] [CrossRef]
3.
Ummel DAchille MMekkelholt J Donors and recipients of living kidney donation: a qualitative metasummary of their experiences. Journal of Transplantation . 2011. Available from: [PMC free article: PMC3134215] [PubMed: 21766008] [CrossRef]
4.
Wirken Lvan Middendorp HHooghof CWRovers MMA J Hoitsma AJHilbrands LBet al. The course and predictors of health-related quality of life in living kidney donors: a systematic review and meta-analysis. American Journal of Transplantation . 2015;15(12):3041–3054. Available from: [PubMed: 26414703] [CrossRef]
5.
de Groot IBSchipper Kvan Dijk Svan der Book PJMStiggelbout AMBaranski AGet al. Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes. BMC Nephrology . 2012;13(103) Available from: [PMC free article: PMC3493312] [PubMed: 22958636] [CrossRef]
6.
Ralph AFButow PCraig JCWong GChadban SJLuxton Get al. Living kidney donor and recipient perspectives on their relationship: longitudinal semi-structured interviews. BMJ Open . 2019;9(4) Available from: [PMC free article: PMC6500358] [PubMed: 30948607] [CrossRef]
7.
Duerinckx NTimmerman LVan Gogh Jvan Busschbach JIsmail SYMassey EKet al. Predonation psychosocial evaluation of living kidney and liver donor candidates: a systematic literature review. Transplant International . 2013;27(1):2–18. Available from: [PubMed: 23889287] [CrossRef]
8.
Potts SVitinius FErim YGazdag GGribble RIsmail SYSet al. Mental health assessment of altruistic non-directed kidney donors: An EAPM consensus statement. Journal of Psychosomatic Research . 2018;107:26–32. Available from: [PubMed: 29502760] [CrossRef]
9.
De Pasquale CVeroux MIndelicato LSinagra NGiaquinta AFornaro Met al. Psychopathological aspects of kidney transplantation: Efficacy of a multidisciplinary team. World Journal of Transplantation . 2014;4(4):267–75. Available from: [PMC free article: PMC4274596] [PubMed: 25540735] [CrossRef]
10.
Pawłowski MFila-Witecka KEwa Rymaszewska JŁuc MKamińska DRymaszewska J Quality of life, depression and anxiety in living donor kidney transplantation. Transplantation Reviews . 2020;34(4) Available from: [PubMed: 33038784] [CrossRef]
11.
Zuchowski MMamode NDraper HGogalniceanu PNorton SChilcot Jet al. Experiences of completed and withdrawn unspecified kidney donor candidates in the United Kingdom: An inductive thematic analysis from the BOUnD study. British Journal of Health Psychology . 2021. Available from: [PubMed: 33600041] [CrossRef]
12.
Iacoviello BMShenoy ABraoude JJennings TVaidya SBrouwer Jet al. The live donor assessment tool: a psychosocial assessment tool for live organ donors. Psychosomatics . 2015;56(3):254–61. Available from: [PubMed: 25975858] [CrossRef]
13.
Massey EKTimmerman LIsmail SDuerinckx NMaple HMega Iet al. The ELPAT living organ donor Psychosocial Assessment Tool (EPAT): from ‘what’ to ‘how’ of psychosocial screening – a pilot study. Transplantation International . 2018;31(1):56–70. Available from: [PubMed: 28850737] [CrossRef]
14.
Reese PPAllen MBCarney CLeidy DLevsky SPendse Ret al. Outcomes for individuals turned down for living kidney donation. Clinical Transplantation . 2018;32(12):e13408. Available from: [PubMed: 30218994] [CrossRef]
15.
Chisholm-Burns MPinsky BParker GJohnson PArcona SBuzinec Pet al. Factors related to immunosuppressant medication adherence in renal transplant recipients. Clinical Transplantation . 2012;26(5):706–13. Available from: [PubMed: 22324912] [CrossRef]
16.
Zimmermann TPabst SBertram ASchiffer Mde Zwaan M Differences in emotional responses in living and deceased donor kidney transplant patients. Clinical Kidney Journal . 2016;9(3):503–509. Available from: [PMC free article: PMC4886908] [PubMed: 27274840] [CrossRef]
17.
Ralph AFChadban SJButow PCraig JCKannelis JWong Get al. The experiences and impact of being deemed ineligible for living kidney donation: Semi Structured interview study. Nephrology . 2020;25(4):339–350. Available from: [PubMed: 31257667] [CrossRef]
18.
British Transplantation Society. Guidelines for Living Donor Kidney Transplantation. Fourth Edition. 2018. Available from: https://bts​.org.uk/wp-content​/uploads/2018​/07/FINAL_LDKT-guidelines_June-2018​.pdf [Accessed 12th March 2021]
19.
Sajjad IBaines LSSalifu MJindal RM The dynamics of recipient-donor relationships in living kidney transplantation. American Journal of Kidney Diseases . 2007;50(5):834–54. Available from: PMID. [PubMed: 17954298] [CrossRef]
20.
Christensen AJRaichle KEhlers SLBertolatus AJ Effect of family environment and donor source on patient quality of life following renal transplantation. Health Psychology . 2002;21(5):468–76. Available from: [PubMed: 12211514] [CrossRef]
21.
De Pasquale CPistorio MLVeroux MIndelicato LBiffa GBennardi Net al. Psychological and Psychopathological Aspects of Kidney Transplantation: A Systematic Review. Frontiers in Psychiatry . 2020;11:106. Available from: [PMC free article: PMC7066324] [PubMed: 32194453] [CrossRef]
22.
Selves LBurroughs AK Letters From Transplant Recipients to the Family of Their Donors Are a Positive Experience for Both, and Can Help Donation. American Journal of Transplantation . 2011;11(9):1994–1995. Available from: [PubMed: 21794089] [CrossRef]
23.
Aziz FJorgenson MRGarg NMohamed MDjamali AMandelbrot Det al. The care of kidney transplant recipients during a global pandemic: Challenges and strategies for success. Transplantation reviews (Orlando) . 2020;34(4):100567. Available from: [PMC free article: PMC7354264] [PubMed: 32690437] [CrossRef]
24.
Mahalingasivam VCraik ATomlinson LAGe LHou LWang Qet al. A Systematic Review of COVID-19 and Kidney Transplantation. Clinical Research . 2021;6(1):24–45. Available from: [PMC free article: PMC7607258] [PubMed: 33163708] [CrossRef]
25.
Massey EKForsberg A Dealing with uncertainty after transplantation in times of COVID-19. Transplant International . 2020;33(10):1337–1338. Available from: [PubMed: 32725696] [CrossRef]
© European Dialysis and Transplant Nurses Association/European Renal Care Association (EDTNA/ERCA). All rights are reserved by the author and publisher, including the rights of reprinting, reproduction in any form and translation. No part of this book may be reproduced, stored in a retrieval system or transmitted, in any form or by means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher.

Except where otherwise noted, this work is distributed under the terms of a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International licence (CC BY-NC-ND), a copy of which is available at http://creativecommons.org/licenses/by-nc-nd/4.0/

Bookshelf ID: NBK581474PMID: 35816603

Views

  • PubReader
  • Print View
  • Cite this Page
  • PDF version of this title (2.9M)

Related information

  • PMC
    PubMed Central citations
  • PubMed
    Links to PubMed

Similar articles in PubMed

See reviews...See all...

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...