Living donors' experiences 1 wk after donating a kidney

Copyright ª Blackwell Munksgaard 2004 Clin Transplant 2005: 19: 90–96 DOI: 10.1111/j.1399-0012.2004.00304.x Living donorsÕ experiences 1 wk after donating a kidney Andersen MH, Mathisen L, Øyen O, Wahl AK, Hanestad BR, Fosse E. Living donorsÕ experiences 1 wk after donating a kidney. Clin Transplant 2005: 19: 90–96. ª Blackwell Munksgaard, 2004 Abstract: In Norway living kidney donors account for approximately 40% of all renal transplants. There is a shortage of information about how living kidney donors experience the donation process during the initial recovery from surgery. The aim of this study was to explore physical and psychosocial issues related to the experiences of living kidney donors 1 wk after open donor nephrectomy. A total of 12 living kidney donors participated in the study. Data were collected by individual in-depth interviews and analysed using empirical phenomenological method. Being a living kidney donor is a complex experience. The informants expressed strong feelings of responsibility and obligation concerning the recipients and had a positive attitude towards the donation. On the other hand, the donors experienced it strange to be a fit individual and go through a major operation. Several of the donors reported that it was painful to go through donor surgery and regarded the recovery period as troublesome. Some donors also reported the double role of being both a patient and a relative to be a stressful experience. This study reveals the importance of being aware of the complex situation of living kidney donors. Health professionals need to understand the nature of the donation process and the donorsÕ needs. It is essential to focus on physical, mental and interpersonal factors when counselling potential living kidney donors. Marit Helen Andersena, Lars Mathisenb, Ole Øyena, Astrid Klopstad Wahlc, Berit Rokne Hanestadd and Erik Fossee Departments of a Surgery and b Thoracic and Cardiovascular Surgery, Rikshospitalet University Hospital, Oslo, Norway, c The University College of Oslo, Oslo, Norway, d Department of Public Health and Primary Health Care, University of Bergen, Bergen, Norway, and e The Interventional Centre, Rikshospitalet University Hospital, Oslo, Norway Key words: in-depth interviews – living kidney donors – open nephrectomy – post-operative experiences Corresponding author: Marit Helen Andersen, Department of Surgery, Rikshospitalet University Hospital, 0027 Oslo, Norway. Tel.: +47 230 72186; fax +47 230 72526; e-mail:[email protected] Accepted for publication 15 September 2004 A worldwide shortage of organs from cadaveric donors has brought about an increasing interest in living kidney donation (1–4). In Norway, kidneys from living donors contribute approximately 40% of all renal transplantations, which is a large fraction compared with other European transplantation centres (5). There are a number of benefits associated with living kidney donors transplantation compared with cadaveric kidney transplantation: improved patient and graft survival, a synchronized surgery schedule for donors and recipients, and shorter waiting time for kidney transplantation (6, 7). These advantages encourage the use of living kidney donors. However, living kidney donation is unique in that healthy persons go through an invasive surgical procedure to improve the life of another person sustaining endstage renal disease, for no physical benefit to 90 themselves. Problems associated with kidney donation are external pressure to donate, ambivalence about making the decision, significant stress for the donors because the procedure is life-threatening and irreversible, post-operative discomfort, a feeling of being ignored by the medical team and recipient conflicts (8–14). These are complex phenomena that call for better understanding by the staff caring for these patients. With integrated knowledge on donor experiences health professionals are better able to support living kidney donors and to reduce problems that might occur during the donating process. Several studies have assessed quality of life in living kidney donors a year or more after donation, but no reported studies have focused on the donorsÕ experience in the peri-operative phase. Because of this and because of the continuing discussion on the use Experiences after donating a kidney of living kidney donors (15, 16) we explored the experiences of 12 Norwegian kidney donors going through living donor nephrectomy. The aim of this study was to provide information on how living donors experienced kidney donation 1 wk after surgery. Patients and methods Participants Twelve Norwegian donors undergoing open donor nephrectomy during the period February–September 2003 at Rikshospitalet University Hospital were consecutively selected for interview. In order to catch the immediate experiences related to the operation and the peri-operative situation, the data were collected 1 wk after donation, usually the day the donor departed from hospital. The donors were all above 18 yr of age and were able to speak and understand Norwegian. The sample contained a broad variation in demographic characteristics such as age, gender, relationship to the recipient, settlement and occupation (Table 1). Table 1. Demographic variables Variable Age 18–30 31–40 41–50 51–60 Gender Female Male Relationship to recipient Mother Father Son/Daughter Sibling Grand-parent Uncle/Aunt Settlement East Norway South Norway Western Norway Mid Norway North Norway Living abroad Occupation Health care personnel Skilled labour Clerk Manager Teacher Student Unemployed n 2 3 4 3 7 5 2 2 4 2 1 1 4 2 2 1 2 1 2 3 2 2 1 1 1 Interviews Data were collected by in-depth interviews with individual participants. The interviews, which were audiotaped, were conducted using a semi-structured interview guide (Fig. 1) and lasted for approximately 1 h. All interviews took place in a closed room with a relaxed atmosphere, starting with a briefing about the purpose of the study. Before ending the interview the participants were asked if they had anything to add. After the interview the participants were given the opportunity to discuss their experience of the interview situation. Data analysis Data were analysed in phenomenological tradition using Kvale’s five steps (17). First the whole donor interview was read to get a general impression. Then, the natural units of meaning as expressed by the living donors were determined by the researcher. Third, the theme that dominated a natural meaning unit was stated as simply as possible. The donor’s answer was read without prejudice and the statements were thematized. The fourth step consisted of interrogating the meaning units in terms of the specific purpose of the study: to answer how the living kidney donors experienced going through living donor nephrectomy. The themes of the meaning units were addressed with respect to such questions as, ÔWhat does this statement tell about living kidney donor-experiences?Õ. In the fifth step, the essential themes of the entire interview were tied together in a descriptive statement. The method thus involves a condensation of the expressed meanings into more and more essential meanings of the structure and style of being a living kidney donor. Ethical considerations All participants were provided with oral and written information about the aim and the design of the study. They were assured that they had the right at any time to discontinue their participation and that the collected data would be handled in a confidential way to be used only for the declared purpose. The study was approved by the Regional Committee for Medical Research Ethics in South Norway. Results Results indicated that going through living kidney donation could be a complex experience. Although 91 Andersen et al. Preparation: Experiences of decision - making process. Experiences of preparing for donating. Recovery from surgery: Experiences of being a fit individual and going through major operation. Experiences of physical and mental recovery from surgery. Experiences of informational needs. Donor – recipient relationship: Experiences of the donor – recipient relationship. Experiences of being both a patient and a relative. Health assessment: Experiences of having one kidney left. Future outlook on own health. Fig. 1. Interview guide. the participants were happy to be donors, the donation process involved physical, mental and interpersonal challenges. An altruistic decision A strong wish to donate emerged as a decisive factor in the decision process. The wish to donate was related to the donorsÕ altruistic perception that they could improve the life of another person. In this perspective donating a kidney became something natural and obvious to do. An immediate personal decision to donate at the moment when kidney transplantation was raised as an option emerged as the most common donor experience. This immediate decision-making reflects a seemingly spontaneous choice with little deliberation. Weighting alternatives or discussing pros and cons did not seem to be an option. The following example from the in-depth interviews illustrates this: At an early stage I told my brother: ÔIf you need a new kidney, you may have one of 92 mineÕ. This was my immediate response, because I felt sorry for the boy. However, data also revealed that the decision to donate could be a result of thoughtful consideration. These participants had considered being a donor for a long period, following the chronic process of renal failure in the recipient. When there was more than one willing compatible donor, this involved considerable discussions in the family, characterized by rational decision-making and weighting alternatives, as demonstrated below: We also discussed the practical matters: for whom of us would it be least complicated to donate a kidney? The interviews indicated that ambivalence during the decision process was not a common denominator. The donors firmly denied any feeling of external pressure. This is expressed in the following three interviews: I feel I did the right thing and I chose to do it myself. Nobody forced me to do it. This is thoroughly my own decision. There was no pressure. No, this was my own will. However, when asking about the motivation for donating a kidney, data indicated that in two cases the donorsÕ roles in the family were crucial for the decision to donate: It is because I am the oldest of the siblings and because my compatibility test was very good. My siblings and I still have our parents alive. I’ve always been Ôthe oldestÕ. Despite these statements, in other parts of the interviews both participants expressed that the decision to donate was their own. An unfamiliar trajectory Being a living kidney donor implies a transition from a fit individual to a surgically traumatized patient. The most common donor experience was that becoming a patient and going through major surgery was a strange and unfamiliar experience. The following statements illustrate this: I don’t know how to put this. It is a very strange feeling, positive because I shall help my father, but at the same time feeling a bit negative about being a fit individual Experiences after donating a kidney coming to the hospital, and then being discharged with a notification of sick leave in your hand. It was indeed a new experience. One has never been hospitalized before! Data revealed that the donors made use of several coping strategies to deal with this new situation, like preparing themselves for donation by actively seeking information or by completely trusting the health professionals. Focusing on the improvement of the recipient to find meaning in own suffering, was another a strategy. Others tried to reduce distress and uncertainty by relating donation to previous life experiences. Two female donors gave these statements: In my experience, this was very much the same as giving birth to my first child, because I had a very difficult delivery. And I remembered it gave me quite a turn because I was unprepared. I feel better this time. I knew how it was, coming to the hospital as a fit individual and departing in a different condition. Fifteen years ago I went through abdominal surgery. That time I was feeling fit before surgery, went through the operation and felt very ill afterwards. So I knew how it was. The donorsÕ main concerns related to the surgical experience were dealing with pain and nausea. The majority of the donors experienced moderate to severe pain during the first week after surgery. The donors felt that they were well prepared for pain, because of the pre-operative teaching programme. However, nausea appeared to be part of the surgical experience for several donors. These participants expressed that they were not adequately prepared to deal with this burden and found nausea very troublesome. One participant described her experience in this way: I was bothered with a lot of nausea. I was not prepared for that and I feel that the past week has been tough! But that is because I stayed in bed from Monday to Saturday suffering from nausea. It was terrible! You don’t feel like a human being! Another stressful experience was related to the fact that the living kidney donors and recipients are admitted to the same ward while at hospital. Being both a patient and a relative could be a difficult challenge, particular for those who experienced the recovery period as troublesome. The donors expressed concerns about the recipient, contemporary to recover from surgery themselves. The following examples illustrate this: I thought very, very little about what could go wrong to me. I was more worried about my father because he is older than me, and I was afraid that something would happen to him. The first thing I had to know when I woke up, was how he was doing. I have asked a lot of questions about my father. Whether he was to be discharged soon, what would happen if his body rejected the kidney … Another donor commented in this way: For me, being both a relative and a patient was the greatest challenge. I have always taken care of my brother and felt responsible. It has always been like that, you know! A strengthened relationship The donorsÕ relationship to the recipient was characterized as close and warm. Concern and love for the recipient was expressed repeatedly during the interviews. A common attitude among the donors was that the relationship to the recipient was strengthened after donation. The following statements from three participants demonstrate the positive change in the donor–recipient relationship: In a way, we are closer now. We will love each other even more. I think we will be even more attached to each other. It also appeared from the interviews that the donorsÕ experiences were free from expectations of repayment or gratitude from the recipient. Regarding the issues of the gift reciprocity and obligation from the recipient, there was a strong wish from the donors that the relationship concerning these factors should remain unchanged after donation. Donation: a meaningful action Some of the donors related donation to own human existence by stating that helping a close family member from deteriorating further was to them the most important thing to do. From this perspective, donation was considered to be a very meaningful action. This sentiment was strong by 93 Andersen et al. all the participants who were parents to the recipient, but it was also expressed by several others participants such as siblings or children of the recipient. The following quotations from the interviews illustrate this: Being able to help my child get well means very much to me. It really means everything to me. The thought that he would queue up for two, three, maybe 4 years …. To contribute and to help feels good. I definitely think so! When you realize what you receive in return – that he will regain health – you feel that it is really worth it. The donors also associated donation with personal growth and development, and a change regarding what is important in life: For me, being a donor means personal growth. Being a donor makes me so proud. Maybe one becomes less selfish and focuses a bit more on others. I hope so! Regarding own future health, the donors had a positive outlook and expressed few worries. Several donors stated that they regarded the surgical scar as irrelevant. The majority of the donors expected to have regular medical follow-up post-donation. None expressed a feeling of loss for having only one kidney left. One of the informant’s stated: I don’t feel I have given anything away, I am not missing anything. If it was an arm or a leg or something visible, that would be different. But a kidney … I don’t notice at all. In a way it is worse pulling a tooth. I know I can manage very well without a kidney! Discussion The aim of this study was to describe living kidney donor experiences 1 wk after donating a kidney. Prior research in this area has mainly been conducted before surgery or in retrospect. The present study adds to current knowledge in that indepth interviews were performed at a time when the donors still were hospitalized and could fully recall their actual experiences. A strong wish to improve the life of another person was a common denominator in the donor experiences. The strong wish to help can be seen as a driving force that triggers the donorsÕ decision 94 making process. This is in line with a number of previous findings showing that living kidney donors often are self-motivated in their decision to donate and act altruistically and straightforward (18–21). In some cases, however, being the oldest among siblings seemed to be crucial for the decision to donate. Though the siblings experienced that their decision was autonomous, they were motivated by the expectations from their family. This can be interpreted as kind of unconscious coercion, in that other family members expect the oldest sibling to donate, as a result of established family roles. Social desirability influencing on donorsÕ decision process is reported in previous studies (13, 22). Jacobs et al. (13) found that siblings, who genetically may be the best donor source, are one of the most likely donorgroups to feel a pressure to donate. This illustrates that the decision to donate a kidney may be complex, and that factors such as family dynamics and role expectations from other family members may play an important role. It is important that health care personnel are aware of these factors when evaluating potential donor candidates, and encourages the donors to express any doubts throughout the decision process. Becoming a living kidney donor and going through major surgery was experienced as an unfamiliar trajectory. How the person copes with this trajectory and how the environment affects that coping are fundamental questions for health care providers. Living kidney donors have limited experience with the health care system and no history of prolonged illness or chronic condition. Several of the donors in the present study experienced that it was painful to go through surgery and that the recovery was troublesome. Similar findings are revealed in previous donor studies (12, 23). Educational initiatives from health professionals are needed to support the donors in this situation. Preoperative care should include a specific teaching programme to prepare the donors thoroughly about the extent of physical and psychosocial impairment that might occur post-surgery. Results indicated that education concerning post-operative nausea also must be an important part of the teaching programme. Implementations of wellstructured pain management programmes are required to reduce post-operative pain. The double role of being both a patient and a relative may be stressful for some donors. It is important that health care providers consecutively evaluate donor needs, encourage the donors to express their needs and to focus on their own situation during recovery. Experiences after donating a kidney Regarding the donor–recipient relationship, our study unveiled that the donors experienced this to be strengthened. Organ donation may be interpreted as a supreme form of gift giving and the gift paradigm can be a useful framework for understanding the donor–recipient relationship (24, 25). Fox and Swazy (26) stated that the act of donation is subject to social and psychological functions, in viewing donation as part of an interpersonal network, including donor, recipient, family and health professionals. In this perspective, donating a kidney creates a strong bond between donor and recipient. It is reasonable to believe that the effect of this bond is very strong the first week after donation, when donor and recipient are thrilled by the recovery and are happy about the improvement of the recipient. However, the fact that the recipient is not able to give something in return, may influence on the donor–recipient relationship in a negative way. Health professionals must be aware of a wide range of possible experiences, and encourage potential donors to voice concerns about possible negative interpersonal and psychosocial consequences of donation. The donors had gone through major surgery and afterwards had one kidney left. In this situation they sought meaning in that doing something special for a loved one was a very important event in their lives. Prior research describes similar findings (22, 27). Some donors also described a resetting of values as a consequence of donation. Thus, donation appears to involve an existential awareness in the donorsÕ lives. It is essential that health professionals take into account the meaning of existential issues and actively support the donors in the way they experience donating a kidney. The donors had a positive outlook on future health the first week after surgery. It is likely that information received from health professionals, focusing on good long-term health outcomes of living donors, influenced the donorsÕ attitude. Besides, positive feedback from recipient, family and medical staff during the first week after donation may have influenced the donorsÕ experiences in a positive way. However, results from previous follow-up studies revealed that some donors reported worries about own health in the years after donation (11, 12, 22). This indicates that for some donors, the positive outlook may change in a negative direction after discharge from hospital, and demonstrates the importance of regular donor follow-ups. This study has some limitations. Interviews were performed 1 wk after donor nephrectomy, and no recipient had at that time rejected their kidney. It is not possible to know how this might influence the donorsÕ experiences. Most interviews were performed the day of the patientsÕ discharge. The day of discharge can be stressful and this may have influenced the dynamics of the interview situations. In spite of the limitations, implications for practice and further research are evident from the findings of this study. Health care professionals must be aware of the complex situation for living kidney donors. Preoperative counselling and education should focus on the impact of going through donor surgery, the donorsÕ needs, their role, and the donor–recipient relationship, in order to relieve the donorsÕ burden. Information must be made widely available for the donors. The study also demonstrates the necessity of helping potential donors to make sure their final decision is objective and safe. Further research in this area is needed to provide a greater insight and understand the complex dynamic of living kidney donation. Repeated follow-up interviews during the first year after donation are necessary to provide knowledge about the different stages that the donors go through, focusing on physical as well as psychosocial dimensions. The participants in the present study had a straightforward clinical course. As there is a degree of morbidity associated with live donation, further research should also focus on donor reactions in case of complications after donor surgery. Acknowledgements This study was funded with the aid of Department of Surgery, Rikshospitalet and The Center for Patient Participation and Nursing Research, Rikshospitalet, Norway. References 1. Westlie L, Leivestad T, Lien B, Meyer K, Fauchald P. Report from the Norwegian National Hospitals Living Donor Registry: one-year data, January 1, 2002. Transpl Proc 2003: 35: 777. 2. 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