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

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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.

Related collections

Most cited references 34

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KDIGO clinical practice guideline for the care of kidney transplant recipients.

(2009)

The 2009 Kidney Disease: Improving Global Outcomes (KDIGO) clinical practice guideline on the monitoring, management, and treatment of kidney transplant recipients is intended to assist the practitioner caring for adults and children after kidney transplantation. The guideline development process followed an evidence-based approach, and management recommendations are based on systematic reviews of relevant treatment trials. Critical appraisal of the quality of the evidence and the strength of recommendations followed the Grades of Recommendation Assessment, Development, and Evaluation (GRADE) approach. The guideline makes recommendations for immunosuppression, graft monitoring, as well as prevention and treatment of infection, cardiovascular disease, malignancy, and other complications that are common in kidney transplant recipients, including hematological and bone disorders. Limitations of the evidence, especially on the lack of definitive clinical outcome trials, are discussed and suggestions are provided for future research.

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KDIGO Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors

Krista Lentine, Bertram Kasiske, Andrew Levey … (2017)

Abstract The 2017 Kidney Disease: Improving Global Outcomes (KDIGO) Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors is intended to assist medical professionals who evaluate living kidney donor candidates and provide care before, during and after donation. The guideline development process followed the Grades of Recommendation Assessment, Development, and Evaluation (GRADE) approach and guideline recommendations are based on systematic reviews of relevant studies that included critical appraisal of the quality of the evidence and the strength of recommendations. However, many recommendations, for which there was no evidence or no systematic search for evidence was undertaken by the Evidence Review Team, were issued as ungraded expert opinion recommendations. The guideline work group concluded that a comprehensive approach to risk assessment should replace decisions based on assessments of single risk factors in isolation. Original data analyses were undertaken to produce a “proof-in-concept” risk-prediction model for kidney failure to support a framework for quantitative risk assessment in the donor candidate evaluation and defensible shared decision making. This framework is grounded in the simultaneous consideration of each candidate's profile of demographic and health characteristics. The processes and framework for the donor candidate evaluation are presented, along with recommendations for optimal care before, during, and after donation. Limitations of the evidence are discussed, especially regarding the lack of definitive prospective studies and clinical outcome trials. Suggestions for future research, including the need for continued refinement of long-term risk prediction and novel approaches to estimating donation-attributable risks, are also provided. In citing this document, the following format should be used: Kidney Disease: Improving Global Outcomes (KDIGO) Living Kidney Donor Work Group. KDIGO Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors. Transplantation. 2017;101(Suppl 8S):S1–S109.

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Systemic corticosteroid therapy--side effects and their management.

R M Stanbury, E M Graham (1998)

The anti-inflammatory effects of corticosteroids cannot be separated from their metabolic effects as all cells use the same glucocorticoid receptor; therefore when corticosteroids are prescribed measures should be taken to minimise their side effects. Clearly, the chance of significant side effects increases with the dose and duration of treatment and so the minimum dose necessary to control the disease should be given. Before embarking on a long term course of corticosteroids the factors summarised in Table 1 should be considered. A full discussion with the patient is necessary in order to explain the benefits and risks of corticosteroid treatment. A patient information leaflet is now provided by the manufacturers of all systemic corticosteroid preparations. As emphasised by the recent publication by the Committee on the Safety of Medicines, advice to patients is the key to the safe use of long term systemic corticosteroids and it recommends discussing the following points with the patient: not to stop taking corticosteroids suddenly to see a doctor if they become unwell of the increased susceptibility to infections, especially chickenpox of the serious side effects that may occur to read and keep the patient information leaflet to always carry the steroid treatment card and to show it to any health professional involved in their treatment. In addition the following suggestions may help to minimise some side effects: a single morning dose early dietary modification--low calorie, low sodium, and high potassium awareness of possible errors of judgment on high doses. Once started on corticosteroids the patient should be regularly reviewed to assess the response to the treatment with adjustments to keep the dose at a minimum.

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Author and article information

Journal

Journal ID (nlm-ta): BMJ Open

Journal ID (iso-abbrev): BMJ Open

Journal ID (hwp): bmjopen

Journal ID (publisher-id): bmjopen

Title: BMJ Open

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Electronic): 2044-6055

Publication date Collection: 2019

Publication date (Electronic): 4 April 2019

Volume: 9

Issue: 4

Electronic Location Identifier: e026629

Affiliations

[1 ] departmentSchool of Psychology , The University of Sydney , Sydney, New South Wales, Australia

[2 ] departmentCentre for Kidney Research , The Children’s Hospital at Westmead , Westmead, New South Wales, Australia

[3 ] departmentPsycho-oncology Co-operative Research Group , The University of Sydney , Sydney, New South Wales, Australia

[4 ] Centre for Medical Psychology and Evidence-Based Decision-Making, The University of Sydney , Sydney, New South Wales, Australia

[5 ] departmentCollege of Medicine and Public Health , Flinders University , Adelaide, Australia

[6 ] Sydney School of Public Health, The University of Sydney , Sydney, New South Wales, Australia

[7 ] departmentCentral Clinical School , University of Sydney , Camperdown, New South Wales, Australia

[8 ] departmentTransplantation Services , Royal Prince Alfred Hospital , Camperdown, New South Wales, Australia

[9 ] departmentFaculty of Medicine , University of New South Wales , Sydney, New South Wales, Australia

Author notes

[Correspondence to ] Angelique F Ralph; angelique.ralph@ 123456sydney.edu.au

Article

Publisher ID: bmjopen-2018-026629

DOI: 10.1136/bmjopen-2018-026629

PMC ID: 6500358

PubMed ID: 30948607

SO-VID: 607d63fe-792a-4409-bfe9-a9e3da59e534

License:

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/.

History

Date received : 12 September 2018

Date revision received : 30 November 2018

Date accepted : 13 February 2019

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100000923, Australian Research Council;

Funded by: FundRef http://dx.doi.org/10.13039/501100000925, National Health and Medical Research Council;

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ScienceOpen disciplines: Medicine

Keywords: qualitative research,kidney donation,renal transplantation

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ScienceOpen disciplines: Medicine

Keywords: qualitative research, kidney donation, renal transplantation

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