Motives for becoming a living kidney donor

Transcription

1 Nephrol Dial Transplant (24) 19: DOI: 1.193/ndt/gfh138 Advance Access publication 5 March 24 Original Article Motives for becoming a living kidney donor Annette Lennerling 1, Anna Forsberg 2,Käthe Meyer 3 and Gudrun Nyberg 4 1 Department of Transplantation and Liver Surgery, Sahlgrenska University Hospital, Go teborg, 2 Institute of Nursing, the Sahlgrenska Academy, University of Go teborg, Go teborg, 4 Department of Nephrology, Sahlgrenska University Hospital, Go teborg, Sweden and 3 Department of Transplant Surgery, Rikshospitalet, Oslo, Norway Abstract Background. Recruitment of living donors represents a medical and moral responsibility. Their motives are often complex. Categories of motives and factors causing concern were identified from a previous in-depth interview study and from the literature. The aim of the present study was to evaluate these motives. Methods. A questionnaire was sent to 27 potential kidney donors undergoing evaluation for donation in Norway and Sweden. They were asked to mark on a visual analogue scale, 1, 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.9), pressure from others (median.8), a religious motive (median.8) and increased self-esteem (median.7) were rare or weak incentives for donation. There were large individual variations in the mix, particularly regarding moral duty (5.6, range.1 1.). 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. Correspondence and offprint requests to: Annette Lennerling, RN, BA, MA, Department of Transplantation and Liver Surgery, Sahlgrenska University Hospital, S Göteborg, Sweden. annette.lennerling@vgregion.se Keywords: decision-making process; information; kidney transplantation; living donor; motives; questionnaire Introduction Living donor transplantation confers a better outcome for the recipient and is the preferred form of kidney transplantation in Norway and Sweden. In both countries, the possibility of a living donor should be carefully explored and found to be non-existent before a patient is accepted on the waiting list for a cadaveric kidney. As also practised in numerous other transplant centres, not only close relatives but more distant relatives such as cousins and unrelated persons such as spouses and close friends can become kidney donors [1 3]. In 22, 46% of renal transplantations in Norway and 37% in Sweden were from living donors. Per million population, the incidence is among the highest in Europe [4]. 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 [5 8]. 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. Nephrol Dial Transplant Vol. 19 No. 6 ß ERA EDTA 24; all rights reserved

2 Motives for becoming a living kidney donor 161 Subjects and methods Subjects A questionnaire was directed to potential kidney donors undergoing evaluation for donation in two out of the four Transplant Units in Sweden and the only one in Norway. The assessment was to be in progress but not completed; therefore, no decision of acceptance had been made. The participants had to understand the Swedish or Norwegian language. Parents with under age children as recipients were excluded. An invitation to participate was sent in May 22 July 23 to 18 Norwegian and 99 Swedish potential donors fulfilling these criteria. The questionnaire was enclosed. The reply, which was anonymous, was considered as consent to participate. A reminder was sent 3 4 weeks later. The study was approved by the ethics committees of the universities in Go teborg, Lund and Oslo. 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 don t 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 Percent Swedish donors parent sibling child other relative spouse friend Percent parent sibling 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 1. cm visual analogue scale (VAS) [1,11]. 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..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, Mann Whitney U and Kruskal Wallis. P-values >.5 were considered not significant. Results The response rate was 74%. In all, 154 questionnaires were returned. Of these, 79 (51%) were from Swedes and 75 (49%) from Norwegians, 91 from females (59%) and 63 from males (41%). The median age was 47 years, range Age and gender distributions were very similar in Norway and Sweden. However, the relationship between the potential donor and the recipient was significantly different, as demonstrated in Figure 1 (P ¼.1). The most important differences Norwegian donors child other relative spouse friend Fig. 1. The histogram depicts the relationship between the potential donor and the recipient for Norwegian and Swedish respondents separately. The distribution in the two countries is significantly different (P ¼.1).

3 162 A. Lennerling et al The relationship between donor and recipient had an impact on the estimated self-benefit (P ¼.3). For this motive, parents and spouses ranked the highest and friends the lowest. Spouses scored the logic motive higher than any other group (P ¼.3). The long waiting time for kidneys from cadaveric donors (1 3 years) was an important contributing 5 reason to donate, score 8.7 (.1 9.9). There were some minor differences between responses from men and women, significant for the logic (P ¼.4), duty (P ¼.46) and self-esteem (P ¼.2) 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. VAS units A wish to help Self-benefit Identification Logic Fig. 2. Box plots demonstrating the scores given by potential kidney donors to various motives on visual analogue scales measuring 1 cm. The horizontal lines indicate the 9, 75, 5 (median), 25 and 1% values. The circles represent individuals outside the 1 9% values. were that the proportion of spouses and friends was higher in Sweden, and that of adult children was higher in Norway. The motives The motives for donation as scored by the respondents are presented in Figure 2. The strongest motives were a wish to help, self-benefit and identification with the recipient. In contrast, a sense of guilt, pressure from others, the religious motive and increased self-esteem were rare or weak incentives for donation. Pressure from others was marked 5 by 15 respondents. They did not differ in their demographics from the main group, but were more often hesitant to donate. The logic motive and the duty motive were moderately strong and with very wide ranges,.1 1. for moral duty. A stronger sense of moral duty to donate was the only significant difference between the nations in the response to these questions, median 6.9 among Norwegians, vs 4. for Swedes (P ¼.2). Moral duty Guilt Pressure Religion Self-esteem 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. Siblings expressed the highest degree of fear related to the nephrectomy (P ¼.1). They scored their fear as 4.9 (.2 9.8), whereas no other category of donors scored a higher median than 1.8. Furthermore, they were more worried than other donors about the longterm consequences of donation for themselves, 6.4 (.3 9.7). The median values in all other donor groups were <3. (P ¼.5). Another difference between donor categories regarded anxiety about the recipient s outcome with or without transplantation (P ¼.5 and P ¼.4, respectively). Friends were the least worried and parents by far the most. There were no differences between the genders in any of the concerns. Table 1 shows that Swedes were less worried about their recipients than Norwegians with transplantation (P ¼.1) and without (P ¼.3). In contrast, Swedes were more worried than Norwegians considering long-term consequences for themselves (P ¼.1). A similar difference in fear of surgery failed to reach statistical significance. Table 1. Concerns regarding live kidney donation as scored by 151 potential donors from Norway and Sweden, visual analogue scale 1 Norwegian Swedish Total Fear of surgery 1. (.1 9.8) 3.2 (.1 9.8) 2. (.1 9.8) Fear of long-term consequences.9 (.2 9.8) 4.2 (.1 9.8)* 2.5 (.1 9.8) Objections from others.7 (.1 1.).9 (.1 9.3).8 (.1 1.) Concern for the recipient without transplantation 9.5 (3.1 1.) 9.1 (5.3 1.)* 9.3 (3.1 1.) after transplantation 9.1 (.5 9.8) 8.6 (.3 1.)* 9. (.3 1.) Values are median (range). *Statistically significant difference between the nationalities, see text.

4 Motives for becoming a living kidney donor 163 Percent 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 1% 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 ¼.9). 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<.1). Furthermore, in Norway, the information was communicated more often by the recipient s physician (P ¼.4) or the recipient himself (P ¼.3). In their spontaneous comments, 12% of Norwegian donors vs 1% of the Swedes complained that information had been too scarce or even absent (P ¼.4). Discussion Recipient Recipient s physician Other medical staff Brochure Article Patient education Previous donor Autobiography Internet TV program Fig. 3. Histogram demonstrating sources of information about living kidney donation provided to potential donors. Methodological considerations This study was designed to investigate motives for donation and the impact of gender, relationship and nationality. We have chosen to approach the issue of kidney donation in two steps. First, an inductive method was used, the in-depth interviews with a few potential kidney donors [9]. This was followed by a deductive method with a questionnaire investigating a larger population. Exploring the phenomenon of becoming a living kidney donor by the interviews gave us a deeper understanding of the process. We could then identify several motives and concerns. Extending and testing these results on a greater population of potential donors made it possible to validate and quantify the findings. 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 [5 8,12 16]. 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

5 164 A. Lennerling et al. in the past (the guilt motive) were expressed in our previous study, though they have been reported in the literature [6 8]. 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. Acknowledgements. We thank Lillemor Hallberg, Professor in Public Health at the Nordic School of Public Health, Go teborg, Sweden, for great help with the construction of the questionnaire, Torbjo rn Leivestad, Head of the Department of Transplantation Immunology at Rikshospitalet in Oslo, Norway, for kindly notifying us of potential kidney donors in Norway, and Per Fauchald, Professor at the Department of Nephrology, Rikshospitalet, Oslo, Norway, Nils H. Persson, Head of Transplant Unit and Nephrology, Malmö University Hospital, Malmö, Sweden and Styrbjörn Friman, Head of Department of Transplantation and Liver Surgery, Sahlgrenska University Hospital, Go teborg, Sweden for assistance in the initial organization of the study. The study was performed with financial support from the Lennart Jacobsson Fund for Research, The Transplant Nurses Association, The Swedish Kidney Fund and Sahlgrenska University Hospital Fund. Conflict of interest statement. None declared. References 1. 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6 Motives for becoming a living kidney donor Fellner C. Renal transplantation and the living donor. Decision and consequences. Psychother Psychosom 1977; 27: Fehrman-Ekholm I, Brink B, Ericsson C, Elinder C-G, Dunér F, Lundgren G. Kidney donors don t regret. Transplantation 2; 69: Terasaki PI, Checka JM, Gjertson DW, Cho YW. Spousal and other living renal donor transplant. In: Checka JM, Terasaki PI, eds. Clinical Transplantation Tissue Typing Laboratory, UCLA Los Angeles, CA; 1998: Received for publication: Accepted in revised form: 7.1.4