How does kidney transplantation affect the relationship between donor and recipient?

Lydia Celine Tansem Buer, Bjørn M. Hofmann About the authors

The use of living donors for patients with serious kidney disease has increased since this became standard practice in the 1960s. The first successful transplantation in Norway with a living donor was performed in 1963 (2). The use of living donors has contributed to maintaining transplantation activities, and the proportion of living donors in Norway has been almost 40 % for the most part (3). The number of persons in the kidney transplant queue has been falling in recent years. In 2009, 292 kidney transplantations were performed in Norway, and at the end of the year there were 179 patients on the waiting list (4). Anonymous donors may not be used in Norway, and there are stringent requirements regarding the health of the donor and his or her relationship with the recipient. Using kidneys from living donors compared with kidneys from deceased donors has been shown to give recipients increased survival and quality of life and to have little negative effect on the quality of life of the donor (3, 5 – 7). Donors state that they seldom regret their decision to be a donor, and that they would have made the same choice again had it been possible. The great majority also state that they chose to donate a kidney spontaneously and without pressure from other quarters (3, 8). The quality of life of donors who are closely related or otherwise close to the recipient proves to be generally higher than in the rest of the population, both before and after the kidney transplantation (9 – 13). The quality of life of recipients is poor before the transplantation because of their illness and possibly dialysis; after the transplantation it generally improves considerably (10, 11, 14). The risk of post-donation complications and death among donors is low (9, 15).

Kidney transplantation is a major intervention that involves recipient, donor, their families and close friends. This may prove challenging for the relationship between recipient and donor. For example, conflicts may arise between a donor and a recipient who are close, even if it is not reflected in general quality of life. It is also possible that the recipient may come to feel such gratitude to the donor that this affects the relationship between them and influences the family dynamics. Third, the type of relationship between donor and recipient may be determinative for their relationship after the donation. A fourth possibility is that the donor feels a sense of unbearable guilt in the event that the transplant is rejected or the recipient dies a short time after the transplantation. We aimed to investigate how the relationship between a recipient and a known, living donor is affected by transplantation.

Material and method

The article is based on a literature search in Medline via Ovid with a combination of the search words «living donor», «kidney transplantation», «quality of life», «family relations», «interpersonal relations», «psychol*» and via PubMed with the combined search words «living donor», «kidney transplantation» and «quality of life». The searches were terminated on 10 February 2010. Only articles in English and the Scandinavian languages were included.

Results

The two searches combined yielded 140 hits. 34 articles were excluded because they focused exclusively on relations prior to donation; 19 did not deal with the relationship between donor and recipient specifically; 40 did not focus on the psychological aspects of transplantation and 17 dealt with unknown donors. Since there were few articles on the subject, none were excluded because of the age of the articles. The articles included are from 1986 to 2010. Two articles have been supplemented by findings in the reference lists (16, 17). The result was a total of 32 articles, one of them a review article (18) and the remainder original articles. 20 articles deal explicitly with the relationship between donor and recipient after transplantation. The results are summarised in table 1 (7, 11 – 13, 16, 17, 19 – 31, 32).

Table 1  Overview of studies included. tx = kidney transplantation

First author

Type of study

Number included in the study (response rate)

Relationship between donor and recipient

Outcome measured

Result

Andersen (19)

Semi-structured telephone interview

12 donors (not given)

Parents 33 %, children 33 %, siblings 17 %, others 17 %

Donor’s relationship with recipient after tx

Very largely stable or improved relationship with recipient

Lumsdaine (11)

Questionnaire

52 donors and 52 recipients (95 %)

Parents 44 %, siblings 21 %, spouses 31 %, others 4 %

Donor’s relationship with recipient and recipient’s relationship with donor before and after tx

Significantly improved relationship after tx

Smith (16)

Questionnaire

536 donors (58.4 %)

Parents 33.5 %, siblings 59.8 %, children 5.5 %, others 1.5 %

Donor’s relationship with recipient after tx

Improved relationship 41.9 %, unchanged 56.6 %, poorer 1.5 %

Lima (21)

Questionnaire and clinical examination

100 donors (94 %) and 100 control persons

Parents 17 %, siblings 57 %, children 16 %, spouses 5 %, others 5 %

Donor’s relationship with recipient after tx

Deteriorated relationship with recipient after tx in 13 %

Feltrin (12)

Questionnaires

69 (86 %), 59 kidney donors, 10 liver donors

Parents 55 %, siblings 19 %, spouses 16 %, children 9 %, others 1 %

Donor’s relationship with recipient after tx

Improved relationship 41 %, unchanged 57 %, poorer 1.45 %

Christensen (22)

Questionnaires

95 recipients (23 received from living donors)

Biological relative 70 %, spouses 30 %

Recipient’s quality of life after tx

Higher quality of life in recipients with supportive family

Reimer (27)

Questionnaire

47 (72 %)

Parents 9 %, siblings 13 %, children 32 %, spouses 30 %, others 11 %

Donor’s perception of problems after tx

10.6 % report family conflicts after donation

Watanabe (23)

In-depth interviews

2 donors and 2 recipients

Spouses

Family’s psychodynamics after tx

Stronger ties and improved relationships

Nørgaard (28)

Semi-structured telephone interview

45 donors (61 %)

Parents 58 %, siblings 38 %, 4 % other family (wife, aunt)

Donor’s relationship with recipient after tx

Improved relationship 45 %, unchanged 50 %, poorer 4 %

Heck (20)

Semi-structured interview

25 donors and 28 recipients. Starting point – 31 pairs

Parents 42 %, siblings 23 %, spouses 19 %, children 10 %, others 6 %

The couples’ overall assessment of relationship after tx

Improved relationship 41 %, unchanged 50 %, poorer 9 %

Scheper-Hughes (17)

Anthropological study

Changes in relationship after tx

Describes experiences of development of complicated relationships

Gill (29)

Semi-structured interview

11 donors and 11 recipients (55 %)

Parents 18 %, siblings 9 %, spouses 73 %

Donor’s relationship with recipient after tx

All relationships improved or unchanged

Terasaki (7)

Questionnaire

176 donors, 167 recipients

Spouses

Changes in marital relationship after tx

All report improved or unchanged marital relationship. Sex life more variable

Franklin (30)

Semi-structured interviews. Ethnographic perspective

20 donors, 30 recipients

Parents 50 %, siblings 50 %

Changes in relationship between donor and recipient after tx

Most recipients had no uncomfortable sense of gratitude

Franklin (30)

Semi-structured interviews. Phenomenological approach

20 donors, 20 recipients

Parents 50 %, siblings 50 %

Changes in relationship between donor and recipient after tx

Relationship between sibling pairs became closer. No indebtedness. 50 % of adolescents who received a kidney from a parent had difficult feelings

Baines (24)

Semi-structured interviews

7 donors and 7 recipients

Parents of children with average age 9 years

Changes in relationship between donor and recipient after tx

Unchanged or closer relations

Kärrfelt (31)

Semi-structured interview

18 parents of children who have undergone tx. 13 of them were donors themselves (90 %)

Parents 72 %, other relatives 11 %, deceased 17 %

Changes in relationship between parents and children after tx

Improved relationship 62 %, unchanged 23 %, become more overprotective 15 %

Neuhaus (25)

Questionnaire

19 parents of children who had undergone tx and their partners (95 %)

Parents

Donor’s and partner’s relationships with recipient after tx

Improved relationship 68 %, unchanged 32 %. 42 % did not agree that they had a closer relationship with the child after tx

Rudow (33)

Questionnaire

32 kidney donors (46 %), 40 liver donors (47 %)

Siblings 28 %, parents 28 %, children 9 %, spouses 12 %, friends 18 %, others 3 %

Donor’s relationship with recipient after tx

Improved relationship 53 % after kidney transplantation, 57 % after liver transplantation

Troppmann (26)

Questionnaire

19 donors (66 %)

Donor’s relationship with recipient after tx. Compares open surgery with keyhole method

Improved relationship with recipient 20 % with keyhole, 78 % with open. Others unchanged

Jacobs (13)

Questionnaire

524 (60 %)

Parents 32.3 %, siblings 45 %, children 7.7 %, other relatives 5.4 %, unrelated 9.5 %

Changes in relationship between donor and recipient after tx

Improved relationship 41 %, unchanged 56 %, poorer 3 %

18 of the 20 articles revealed largely unchanged or improved relations (7, 11 – 13, 16, 19 – 29, 31, 32).

For example, most of the donors in a Norwegian study spoke of a close and stable relationship with the recipient through the transplantation process (19). Some donors explained that they thought their relationship became more dynamic and balanced as a result of the recipient’s medical and psychosocial improvement.

In studies where both donors and recipients were involved, most of them stated that the transplantation process had substantially improved their relationship with one another (11, 20). However, the donors were inclined to believe that the transplantation had also had some negative effects on the relationship (11). The number who were of this opinion increased with the passage of time following donation.

A third of the respondent donors in one study who got divorced shortly after the transplantation explained that this process had been a contributory factor to the rupture (16). In another study, as many as 13 % of the donors stated that their relationship with the recipient had deteriorated since the transplantation (21).

Family dynamics

An Italian study found a positive effect on the relationship between donor and recipient, and in addition an unchanged or improved relationship between the donor and the rest of the family (12). The authors point out that a supportive family through the donation process has an effect on the donor’s quality of life and closeness to the recipient. There was also a correlation between support from the family in the time prior to transplantation and improved relations with both the recipient and the family as a whole after the transplantation.

Christensen et al. showed that the family dynamics also influence the recipient’s quality of life after the transplantation (22) and postulates that the importance of a supportive family circle varies depending on the source of the kidney. When the kidney was from a deceased donor, the recipient showed moderate improvement in quality of life independently of family support. There proved to be greater differences in the improvement in quality of life of patients who received a kidney from a family member. Recipients with a supportive family circle reported better psychosocial functioning after the transplantation than recipients who had a less supportive family.

Many studies show an unchanged or improved family environment after kidney transplantation (7, 20, 23 – 26). Lumsdaine et al. concluded that relations with the family appeared to remain unchanged for the donors, whereas they tended more to be experienced as improved by the recipients (11). However, a Norwegian study points out that some donors had not been prepared for the fact that the donation would affect function and family dynamics as long as a year after the transplantation (19). Reimer et al. reported that 96 % of the donors would have done the same again; nevertheless, about 10 % reported that mild or moderately serious family conflicts arose after the donation (27).

Exchange of gifts – gratitude

Watanabe & Hiraga studied donation between spouses, and found stronger family ties and improved relations between husband and wife after the transplantation (23). The authors stress the advantages of not having to involve anyone other than the immediate family, thereby avoiding being indebted to anyone. This may be important in some cultures, like Japan, where the giving of gifts is linked to strong and rule-governed expectations of reciprocation.

The topic of gratitude recurs in a number of studies. In a Danish survey, some donors related that recipient and recipient’s family demonstrated such gratitude that it felt like a burden (28). Three of 22 couples in a German study reported that their relationships became more difficult because of indebtedness (20).

Anthropologist Scheper-Hughes has investigated family relations, commitments and expectations of gratitude (17, 22). She gives several examples of donations where the donor-recipient relationship has become very unbalanced. For example, a donor aunt forbade her niece to get engaged to a man whom the aunt did not find worthy of the life she had saved, and a donor sister was so anxious about the kidney she had given to her brother that she did not want him to go to parties where alcohol was involved.

Gil & Lowes found that donors often tried to tone down their deed and show that they did not expect anything back (29). The recipients also felt intense gratitude, but were not obliged to show it the whole time. Many explain that this has enabled them to continue with an unchanged relationship.

The importance of the roles

Like Watanabe & Hiraga (23), Terasaki et al. stress the advantages of using the spouse as donor, and find that survival is as good as when biologically related donors are used, with the exception of donation between HLA-identical siblings (7). At the same time this gives relational advantages (table 1).

Siblings in Franklin & Crombie mainly reported a better relationship after donation (30). A different tendency is seen in this study where young recipients receive a kidney from a parent; half of the recipients experienced conflict in the relationship in the form of an uncomfortably strong sense of gratitude or that their parents subsequently took too much control of their lives. Two of the adolescents thought that a kidney from a deceased donor would have been better. However, all donor parents in this group felt that their relationship with their children had improved, and did not regret the donation. The experience of the youngsters can be partly explained by the fact that typical parent-child conflicts are exacerbated in an intense situation of this kind.

However, in other studies with the emphasis on parent-child donation this does not appear to have had a negative effect on family dynamics or on the relationship between parent and child (24, 25, 31). In two of these studies, the children’s points of view are not described (25, 31).

Unsuccessful transplantation

Few articles consider how the relationship between donor and recipient is affected in cases where the kidney is rejected. There are examples of donors and recipients who have been involved in unsuccessful transplantations being less willing than others to take part in studies (22, 23) or being excluded from them (22). A Norwegian survey shows that donors are not subject to unreasonable feelings of guilt or regret after an unsuccessful transplantation (19).

Discussion

Most studies reveal general satisfaction on the part of donor and recipient after a kidney transplantation. The studies that have considered the relationship between donor and recipient after a donation process show an equally good or improved relationship between the parties in the great majority of cases. This is consistent with a systematic review article from 2006, where a number of psychosocial aspects of living donors were reviewed (18).

One of the studies reveals nonetheless that when adolescents receive a kidney from one of their parents, conflicts frequently arise, as perceived by the recipient (30). Other studies dealing with child-parent donation in isolation report a positive outcome, but here the children are younger, or their points of view are not reported (24, 25, 31).

A number of authors point out that family dynamics have a bearing on the outcome when a known, living donor is used. Good relationships appear to tend to improve, while poor or unbalanced relationships more often deteriorate. It is therefore important that the relationship between potential donor and recipient be examined before transplantation takes place. Perhaps greater efforts should be made to identify donor-recipient pairs with a high risk of developing a poorer relationship after the transplantation. It is essential that donor and recipient are informed that relational conflict may develop after donation, and that they have the opportunity to discuss this afterwards. Oslo University Hospital Rikshospitalet’s information brochure for kidney donors takes up this subject (33).

As the data available are limited, the literature that is included does not provide adequate answers to how an unsuccessful transplantation affects a relationship.

Many will feel that it is impossible to reciprocate in purely material or financial terms for a kidney. Nevertheless, this review shows that there is a great sense of reciprocation. The donor gives away a kidney, but also gets something back: the joy that the recipient’s health and quality of life improves, the recipient’s gratitude, and the joy of giving. The studies that have been reviewed recount more about the donors’ experiences than about the recipients’. This can give an unbalanced picture. More empirical data is needed, based on a comparison of donors’ and recipients’ experience of the transplantation process and how it affects their relationship. It would also be of interest to find out more about young recipients’ experiences when a parent is the donor, and in general what type of relationships are most prone to be negatively affected by transplantation.

A number of studies show that, on balance, the quality of life of donors is higher than that of the general population. This is hardly a result of the donation in itself, but rather a prerequisite for it. At the same time, there is reason to believe that persons with a higher quality of life will also have the resources to maintain and nurture good relations with those around them.

There is a low response rate in some studies, and the possibility cannot be excluded that selection skewness may have resulted in a more positive picture than the reality of the situation (28, 29, 32). It may be easier to say no to participating if there have been problems along the way. In a few studies, one cannot be sure that the respondents were able to speak freely, as the interviews were carried out with both recipient and donor present at the same time (20, 24). Apart from that, the response rate was good on the whole, and anonymity well protected in the studies that were reviewed.

The studies that deal with the relationship between donor and recipient are few, limited in scope and stem from cultures that have widely different family and gift-exchange traditions. The absence of evidence of an effect must not be interpreted as evidence of the absence of the effect. The results must therefore be interpreted with caution.

Conclusion

The literature shows that in the great majority of cases, the relationship between donor and recipient is unchanged or improved after kidney transplantation where a living, known donor is used. Use of a living donor must be viewed as advantageous; it has little effect on the donor’s quality of life and substantially improves the recipient’s physical and mental health. It is very important to identify donor-recipient pairs who have a high risk of developing a more complicated relationship with one another after donation, and in these cases to consider an alternative solution in order to prevent potential conflicts.

Main points

  • There are few studies that have investigated relations between known, living donors and recipients in kidney transplantation.

  • The studies that have been made show that in the great majority of cases, the relationship between donor and recipient is unchanged or improved after the transplantation.

  • It is important to evaluate the relationship between donor and recipient before transplantation, because poor relationships may have a tendency to worsen.

The article is based on a student assignment (1).

1

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8

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11

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12

Feltrin A, Pegoraro R, Rago C et al. Experience of donation and quality of life in living kidney and liver donors. Transplant Int 2008; 21: 466 – 72.

13

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16

Smith MD, Kappell DF, Province MA et al. Living-related kidney donors: a multicenter study of donor education, socioeconomic adjustment, and rehabilitation. Am J Kidney Dis 1986; 8: 223 – 33. [PubMed]

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18

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19

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20

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21

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22

Christensen AJ, Raichle K, Ehlers SL et al. Effect of family environment and donor source on patient quality of life following renal transplantation. Health Psychol 2002; 21: 468 – 76. [PubMed] [CrossRef]

23

Watanabe T, Hiraga S. Influence on family psychodynamics on spousal kidney transplantation. Transplant Proc 2002; 34: 1145 – 7. [PubMed] [CrossRef]

24

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25

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26

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27

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28

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29

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30

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31

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32

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33

Til deg som er spurt om å gi nyre. Informasjonshefte. Oslo: Rikshospitalet–Radiumhospitalet og Nyremedisinsk forening, 2007. www.nephro.no/skjema/infonyredonor.pdf (18.4.2011).

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