1Department of Transplantation and Liver Surgery, Sahlgrenska University Hospital, Göteborg, 2Institute of Nursing, the Sahlgrenska Academy, University of Göteborg, Göteborg, 4Department of Nephrology, Sahlgrenska University Hospital, Göteborg, Sweden and 3Department of Transplant Surgery, Rikshospitalet, Oslo, Norway
Correspondence and offprint requests to: Annette Lennerling, RN, BA, MA, Department of Transplantation and Liver Surgery, Sahlgrenska University Hospital, S-413 45 Göteborg, Sweden. Email: annette.lennerling{at}vgregion.se
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Abstract |
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Methods. A questionnaire was sent to 207 potential kidney donors undergoing evaluation for donation in Norway and Sweden. They were asked to mark on a visual analogue scale, 010, the importance given to each of nine motives and five factors of concern. Questions were also asked about who took the initiative and the source of information.
Results. The response rate was 74%; 154 questionnaires were returned. The strongest motives to become a donor were a wish to help (median 9.3), self-benefit from the recipient's improved health (median 9.2) and identification with the recipient (median 9.1). In contrast, a sense of guilt regarding past relationships (median 0.9), pressure from others (median 0.8), a religious motive (median 0.8) and increased self-esteem (median 0.7) were rare or weak incentives for donation. There were large individual variations in the mix, particularly regarding moral duty (5.6, range 0.110.0). Most potential donors (64%) had taken the initiative for the assessment themselves, but in 22% it was the recipient's physician. Physicians were the dominant source of information. The potential donors expressed much more concern for the recipient than for themselves.
Conclusions. Living kidney donor assessment includes an exploration of the individuals mixed feelings. An analysis of the motive enables individualized treatment and support for non-donors.
Keywords: decision-making process; information; kidney transplantation; living donor; motives; questionnaire
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Introduction |
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Recruitment of the donor represents a medical and moral responsibility. This involves information about the risks involved as well as exploration of motives for donation. Several motives for kidney donation have been identified in earlier studies of the decision-making process, such as altruism, moral duty, religious beliefs, external pressure and guilt from past relationships [58]. In a previous in-depth interview study involving 12 potential kidney donors, we found seven categories of motives [9]. The motives were expressed as a wish to help, a feeling of moral duty, self-benefit from the relative's improved health, improved self-esteem from doing good deeds, identification with the recipient, external pressure and, finally, logic, i.e. knowing that you can live a normal life with one kidney. That inductively performed study formed the basis for this larger investigation of potential donors. The aim of the present study was to validate as well as quantify the results.
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Subjects and methods |
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The questionnaire
The questionnaire was based mainly on the previously performed in-depth interviews [9]. Two motives were added to the original seven, i.e. religion and guilt from previous relationships. Statements were made covering the nine identified motives as well as some crucial additional factors, found in the interviews to reinforce the wish to donate or to cause concern. These factors were waiting time for a cadaveric kidney, objections from others, fear of surgery, concern for long-term consequences of donation, and anxiety for the recipient's outcome with or without transplantation [9]. The following statements were made: I want to help my relative; My religion tells me that it is the right thing to donate a kidney; I fear surgery; I have got two kidneys and need only one; Others dont want me to donate; I want to improve my relations with my relative; Others want me to donate; The waiting-time for a cadaveric kidney is long; I am worried about the future for my relative after transplantation; I am worried about the future for my relative without transplantation; I feel that it is my duty to donate a kidney; If I donate a kidney, others will see me as a better person; I would not want to be in the same situation as my relative; I have no other option than to donate; I would myself benefit if my relative received a transplant; and I worry about my own future should I donate. The respondents were asked to mark the importance of each statement with a cross on a 10.0 cm visual analogue scale (VAS) [10,11]. The words unimportant and important were written under the line at each end of the VAS. Nothing else was marked on the line.
In addition to the VAS statements, information was requested regarding the donor's relationship to the recipient, sources of provided information, who initiated the assessment, the length of time the person had considered donation and the determination to donate. There was also a question about whether financial compensation had been offered. Each informant was invited to make a free comment.
Statistics
StatView 5.0.1 was used for the statistical analyses. Differences in frequencies between patient groups were calculated with the 2 test and differences in continuous variables with non-parametric tests, MannWhitney U and KruskalWallis. P-values >0.05 were considered not significant.
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Results |
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The long waiting time for kidneys from cadaveric donors (13 years) was an important contributing reason to donate, score 8.7 (0.19.9).
There were some minor differences between responses from men and women, significant for the logic (P = 0.04), duty (P = 0.046) and self-esteem (P = 0.02) motives. Women scored slightly higher for the logic motive, whereas men indicated a greater sense of duty. Only five respondents marked 5 for the self-esteem motive; these were all men. No relationship was observed between age and any of the motives.
Concerns
The decision-making process was affected by several concerns. They were estimated by five statements, as shown in Table 1. On the whole, the potential donors expressed much more concern for the recipients than for themselves. The worry was only a little weaker with transplantation than without. Few donors experienced objections to the donation from other persons.
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Table 1 shows that Swedes were less worried about their recipients than Norwegians with transplantation (P = 0.01) and without (P = 0.0003). In contrast, Swedes were more worried than Norwegians considering long-term consequences for themselves (P = 0.01). A similar difference in fear of surgery failed to reach statistical significance.
Initiative and information
Most potential donors, 64%, had taken the initiative for the assessment themselves, while the recipient had acted in 13% and his or her physician in 22%. Other individuals, most often family members, took the first step in 9% (the sum exceeds 100% because some respondents indicated more than one person). The procedure was significantly different in the two countries. Swedes more often than Norwegians took the initiative themselves, 77% vs 51% (P = 0.0009). Consequently, Norwegians were more often asked by their sick relative or his physician.
Figure 3 shows how information about the donation had been provided, if at all. The recipient's physician was the dominant source of information, followed by information brochures and the recipient. This procedure was very different in the two countries. More Swedes than Norwegians had been offered written information, 78% vs 23% (P<0.0001). Furthermore, in Norway, the information was communicated more often by the recipient's physician (P = 0.004) or the recipient himself (P = 0.03). In their spontaneous comments, 12% of Norwegian donors vs 1% of the Swedes complained that information had been too scarce or even absent (P = 0.004).
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Discussion |
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In this study, we have captured the thoughts and feelings at the assessment stage of the process. Most previous studies on living kidney donors experiences have been performed post-donation [58,1216]. That is a completely different setting. It must be very difficult for an individual to separate his or her expectations from the actual experience of donation. Furthermore, for various reasons, some potential donors will never donate, and these are included in our study.
The results
All motives found in our previous study were encountered in this extended investigation. Not unexpectedly, a wish to help was the strongest motive, but almost as highly ranked were self-benefit due to the recipient's anticipated improved health and identification with the recipient.
A gain in self-benefit by the donation has been reported for both the emotionally and the genetically related [17]. We found that this is a strong motive for donation particularly for spouses and parents. Identification with the recipient has not been recognized previously as a motive. Our in-depth interview study suggested that siblings had a stronger sense of identification with the recipient than other relations, but this was not verified; all categories gave a high score to this motive.
In other studies, increased self-esteem as a psychological effect of kidney donation has been reported [12,13,17]. However, as a motive, improved self-esteem was very weak. From our knowledge of Scandinavian attitudes, we suspected that people would be reluctant to admit that they saw the action of donation to be heroic in nature. Therefore, we expressed the motive discreetly: Others would see me as a better person if I became a kidney donor. Nevertheless, only a handful of potential donors gave considerable value to this aspect. Though the motive does not appear to be natural in Scandinavia, we think that a statement in that direction made by transplant professionals after the donation would be well received and appreciated. This possibility to gratify the donors should be taken advantage of, because it might improve the donors recuperation and sense of well-being.
It is remarkable that all those who gave significant marks to this self-esteem motive were men. It has been suggested that males regard living donation as an unusual gift, whereas females see it as an extension of usual family obligations [13].
Neither a religious motive nor a wish to make reparation for some injustice or conflict in the family in the past (the guilt motive) were expressed in our previous study, though they have been reported in the literature [68]. These motives were indeed indicated by some respondents. For religion, these were few, and the motive mostly rather weak. The established religion in Norway and Sweden is the protestant Lutheran Church, but both societies are secularized. Actions that are ascribed elsewhere to religious rules or customs would be explained in other terms here, mainly as a wish to help, identification and a sense of moral duty.
It is interesting that Norwegian potential donors expressed a much higher sense of duty to donate than Swedes. Norway has rough geographical conditions and consists of many small communities where people are extremely dependent on each other. Furthermore, in the past, the financial situation was more difficult in Norway than in Sweden, and Norway but not Sweden was involved in World War II. A different aspect of importance is that living donors are often actively recruited in Norway, whereas the medical profession in Sweden most often awaits the donor's initiative.
The guilt motive was concealed or weakened in the questionnaire as a wish to improve the relationship with the recipient. That would include less disturbed relationships than actual guilt. In spite of this, few respondents gave high marks to this motive. External pressure influencing the decision has been described in the literature [6,8]. In this study, very few expressed pressure as a motive. We find this very reassuring.
The majority of the potential donors were highly motivated, but nevertheless expressed strong concerns or fear. In particular, they were very worried about the recipient both with (facing) transplantation and without. The contents of this worry remain unexplored, but it probably includes consideration of the recipient's health and prognosis in general. Fear on the donors own behalf in the short term and in the long term was low but not negligible, especially not among Swedes. This might be related to the fact that they had received more information also about involved risks.
The role of the recipient's physician in providing information and also sometimes in the recruitment of the donor is problematic. For practical reasons, there may at times not be any alternative, but such a situation demands profound ethical responsibility.
In our previous study, the respondents requested more information and feedback about blood tests and medical examinations during the work-up period and they sometimes felt they were in a void [9]. This study has confirmed that there is a gap between given information and the need. In particular, this applies to persons who had been summoned to undergo blood tests without having received any information. We consider such a procedure unacceptable.
Concluding remarks
The use of live kidney donors will continue and, in all probability, increase. Health care professionals involved in living kidney donation programmes have a great responsibility to explore and understand how potential kidney donors experience the situation and to appreciate how mixed their feelings may be. Following analysis of the motives, one may assist through the assessment and individualize interventions. Furthermore, when individuals are found to be unwilling or unsuitable for some reason, knowledge of their motives and concerns will enable support.
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Acknowledgments |
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Conflict of interest statement. None declared.
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References |
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