The Motivations and Experiences of Living Kidney Donors: A Thematic Synthesis

doi:10.1053/j.ajkd.2011.11.043

American Journal of Kidney Diseases

Volume 60, Issue 1, July 2012, Pages 15-26

https://doi.org/10.1053/j.ajkd.2011.11.043 Get rights and content

Background

Living kidney donation is associated with better recipient outcomes compared with deceased kidney donation, but living kidney donors face the risk of physical and psychological complications. The aim of this study was to synthesize published qualitative studies of the experiences and perspectives of living kidney donors.

Methods

We conducted a systematic review and thematic synthesis of qualitative studies of motivations to donate and experiences after donation of living kidney donors. MEDLINE, Embase, PsycINFO, CINAHL, and reference lists of articles were searched to April 2011.

Results

26 studies involving 478 donors were included. We identified 6 themes about the decision to donate: compelled altruism, inherent responsibility, accepting risks, family expectation, personal benefit, and spiritual confirmation. Three themes dominated the impact of donation and postdonation: renegotiating identity (including subthemes of fear and vulnerability, sense of loss, depression and guilt, new appreciation of life, and personal growth and self-worth), renegotiating roles (including subthemes of multiplicity of roles, unable to resume previous activities, and hero status), and renegotiating relationships (including subthemes of neglect, proprietorial concern, strengthened family and recipient bonds, and avoidance of recipient indebtedness).

Conclusions

Kidney donation has a profound and multifaceted impact on the lives of donors and requires them to renegotiate their identity, roles, and relationships. Strategies to safeguard against unwarranted coercion, and to maximize donor resilience, capacity to negotiate their multiple roles as a patient and carer, emotional fortitude, and ability to have balanced expectations and relationships with the recipient and the family are needed to ultimately protect the safety and well-being of living kidney donors.

Section snippets

Data Sources and Searches

MeSH terms and text words for living donation and kidney transplant were combined with MeSH terms and text words for psychological, social, and quality-of-life concepts and qualitative research terms (Table S1, available as online supplemental material). The searches were conducted April 11, 2011, in MEDLINE (1948 to week 5, 2011), PsycINFO (1806 to April week 1, 2011), EMBASE (1980 to week 14, 2011), and CINAHL (1982 to week 5, 2011). We also searched reference lists of relevant articles and

Literature Search

Our search yielded 2,491 articles. Twenty-six studies involving 478 living kidney donors were included in the review (Item S1). Study characteristics are listed in Table 1. Participants were either related (parent, child, sibling, spouse, grandparent, or distant relative) or nonrelated donors (friend or altruistic nondirected). The studies were conducted in the United States, United Kingdom, Continental Europe, Canada, and Australia. Across all studies, interviews, focus groups, surveys with

Discussion

Kidney donation has a profound and multifaceted impact on the lives of donors, who have to renegotiate their identity, roles, and responsibilities posttransplant. Positive adjustment in donors was characterized by a new appreciation of life, personal growth and self-worth, hero status, strengthened bonds with family and recipient, and avoiding recipient indebtedness, which was facilitated in part by multidisciplinary support, recognition, and improved outcomes of the recipient. Negative

Acknowledgements

Support: Dr Tong is supported by a postdoctoral research fellowship (funded under the National Health and Medical Research Council Capacity Building Grant in Population Health, ID 457281). The funding organization had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; or preparation, review, or approval of the manuscript.

Financial Disclosure: The authors declare that they have no relevant financial interests.

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Ideally, no live kidney donor should regret their decision or feel they were not fully prepared for the process. Unfortunately, this is not a reality for all donors. The aim of our study is to identify areas for improvement, focusing on factors (red flags) that predict less favorable outcomes from a donor perspective.
A total of 171 living kidney donors responded to a questionnaire with 24 multiple-choice questions and space for comments. Less favorable outcomes were defined as lower satisfaction, extended physical recovery period, long-term fatigue, and longer sick leave.
Ten red flags were identified. Of these factors, more fatigue (range, P = .000-0.040) or pain (range, P = .005-0.008) than expected while still in hospital, the actual experience being harder or different than expected (range, P = .001-0.010), and the donor wishing to have had but not having been offered a previous donor as mentor (range, P = .008-.040) correlated significantly with at least 3 of the 4 less favorable outcomes. Another significant red flag was keeping existential issues to oneself (P = .006).
We identified several factors indicating that a donor could be at an increased risk for a less favorable outcome after donation. Four of these factors have, to our knowledge, not been described earlier: more early fatigue than expected, more postoperative pain than anticipated, not having been offered a mentor at an early stage, and keeping existential issues to oneself. Attention to these red flags already during the donation process could help health care professionals to act early to avoid unfavorable outcomes.
Living uterus donors’ perceptions of decision-making and informed consent: a qualitative study of the Dallas Uterus Transplant Study participants
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Uterus transplantation is a growing field, but little is known about living uterus donors’ perceptions of informed consent or their decision-making processes. This study used semistructured interviews to collect information regarding uterus donors’ experiences with uterus donation, perceptions of the informed consent process, and information on how they decided to pursue uterus donation. Interviews were coded for thematic analysis. Three major themes emerged in this study. First, the decision-making process was based on individuals’ motivations, rationale, and considerations of alternative contributions to help other women with infertility. Second, participants described how they felt about the process of informed consent, their decision-making processes, and how their experiences compared with their expectations. Third, participants discussed how uterus donation was a valuable experience. This study found that living uterus donors are motivated to give another woman the opportunity to experience pregnancy and childbirth. They were satisfied with the informed consent process, their experiences were in line with their expectations, and the value of uterus donation was associated with the act of donation itself. Our findings suggest that living donor uterus programs should develop robust informed consent processes that provide detailed information about uterus donation and encourage shared decision-making with potential uterus donors.
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Citation Excerpt :
Usually, donation by parents or wives in general also evident from our study was accepted as a part of benevolence and compassion towards the recipient, however siblings it was more of a moral obligation to meet family expectations. Such moral imperative can affect subconscious decisions making [17,18]. 82.1% in our study received family recognition, especially female spouses who added to their greater respect and dignity in the family.
Living kidney donation is a complex psychological experience for donors. The present study examined the psychosocial impact of kidney donation on donors.
The retrospective study included 506 donors who donated a kidney between 2010 and 2018 at a transplant centre in India. These donors responded via a donor insight questionnaire about their hospital anxiety, and their possible level of depression. The information included socio-demographic form with multiple information. The health survey was used periodically evaluate the psychosocial impact among donors following donation, including the transplant outcomes.
The majority of donors were females (79.4%). There was a significant improvement in the quality of life among donors (SF-36) following the donation of a kidney, especially among those donors who maintained good graft functions themselves as well as those who were informed about good kidney function in transplanted recipients. These donors showed a lesser degree of depressive and anxiety scores (HAD score 3.5 and BDI II 4.8) than donors who had problems themselves and/or whose donated kidneys did not function well. Most living donors (89.1%) felt that the act of donation had a positive impact on their lives and those donors would encourage others to donate a kidney. Overall, the graft outcomes impacted the donor's state of mind.
The study showed a very positive impact of the acknowledgment of the donor by the recipient, especially those donors whose kidney transplants were well functioning. The state of depression, anxiety, and psycho-social outcomes correlated with the graft outcomes. Donors showed positive insight towards donation, with inner conscience still conclusively willing to donate and encourage others.
Psychosocial and Ethical Behaviors and Attitudes of Health Care Professionals in the Clinical Setting of Living Kidney Donors: A Qualitative Study
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There are several psychosocial and ethical issues surrounding the decision making of living kidney transplant donors. This study aimed to determine what health care professionals (HPs) consider in their clinical practice and their attitudes toward donors’ decision-making processes.
Face-to-face semistructured interviews were conducted with 15 HPs. A thematic analysis was performed to categorize the thematic elements of the transcripts. All procedures were approved by the relevant review board and conducted in accordance with the Declaration of Helsinki.
Six main categories—maintaining family relationships, improving donor understanding, supporting voluntary decision making, setting the environment for the examination, having different attitudes toward the donor's intentions, and resisting confirmation of intent—were identified. The HPs provided diverse considerations to respect the donors’ autonomy.
In clinical practice, there is a lack of practical methods to confirm living donors’ levels of understanding and spontaneity, suggesting that these methods need to be established. Factors related to family functioning may reflect the unique culture of Japan, and this may be indicative of the need to consider treatment based on cultural values.
What blood and organ donation can tell us about cooperation?
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High-cost cooperation directed towards strangers is difficult to explain from an evolutionary perspective. Here, it is argued that by studying the behaviours, motivations, and preferences of real-world high-cost cooperators — blood and organ donors — insights can be uncovered into the mechanisms supporting cooperation. In this respect, this article details two novel mechanisms to enhance cooperation in the face of free-riding, (1) ‘reactive reluctant altruism’ whereby people help because they do not trust others to help and (2) the ‘Good Shepherd’ effect whereby cooperation is enhanced when people observed others cooperate although the social norm is to free-ride. Finally, it is argued that repeated acts of high-cost cooperation are sustained by a self-selection process based on the reinforcing effect of warm-glow.
Gender and race/ethnicity differences in living kidney donor demographics: Preference or disparity?
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Citation Excerpt :
In many cultures where male dominance within the family is the norm, there can be a relative lack of self-esteem of female family members. Living donation may increase women's self-esteem as their family members praise and or socially reward them for their donation. [22,23] Conversely, a female donor lacking in subjectively important social goods who seeks not only increased self-esteem but also the esteem and praise of others in the family may be disappointed if post-transplant attention of family members is focused on the recipient whom they regard as sick, while they still perceive the donor as a healthy individual.
In the United States, women are over-represented and Blacks are under-represented as living kidney donors. A traditional bioethics approach would state that as long as living donors believe that the benefits of participation outweigh the risks and harms (beneficence) and they give a voluntary and informed consent, then the demographics reflect a mere difference in preferences. Such an analysis, however, ignores the social, economic and cultural determinants as well as various forms of structural discrimination (e.g., racism, sexism) that may imply that the distribution is less voluntary than may appear initially. The distribution also raises justice concerns regarding the fair recruitment and selection of living donors. We examine the differences in living kidney donor demographics using a vulnerabilities analysis and argue that these gender and racial differences may not reflect mere preferences, but rather, serious justice concerns that need to be addressed at both the individual and systems level.

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: Originally published online February 10, 2012.

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Special ArticleThe Motivations and Experiences of Living Kidney Donors: A Thematic Synthesis

Background

Methods

Results

Conclusions

Section snippets

Data Sources and Searches

Literature Search

Discussion

Acknowledgements

Kidney Int

Am J Kidney Dis

Am J Transplant

Am J Transplant

Transplant Proc

Transplant Proc

Int J Nurs Stud

Am J Transplant

Am J Kidney Dis

Kidney Int

Am J Transplant

Am J Transplant

Am J Transplant

Registry Report 2009

Transplant Activity in the UK

The ethics of organ donation by living donors

N Engl J Med

Living Donors

Does cadaveric donor renal transplantation ever provide better outcomes than live-donor renal transplantation?

Transplantation

Medical risks in living kidney donors: absence of proof is not proof of absence

Clin J Am Soc Nephrol

CARI guidelines: living kidney donor

Nephrology

Enhancing Living Donation: A Canadian ForumReport and Recommendations

Section II: evaluation and selection of donors

Nephrol Dial Transplant

Guidelines on Renal Transplantation

Long-term follow up of living kidney donors: quality of life after donation

Transplantation

Health-related quality of life of living kidney donors: review of the Short Form 36-health questionnaire

Transplant Int

Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32 item checklist for interviews and focus groups

Int J Qual Health Care

Methods for the thematic synthesis of qualitative research in systematic reviews

BMC Med Res Methodol

Living donors' experiences 1 wk after donating a kidney

Clin Transplant

Follow-up interviews of 12 living kidney donors one yr after open donor nephrectomy

Clin Transplant

The experience of living kidney donors

Health Soc Work

Special Article
The Motivations and Experiences of Living Kidney Donors: A Thematic Synthesis