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An exploration of experiences of living renal donors following donation.

Kidney transplants offer persons with renal failure the opportunity to increase their quality and quantity of life. However, transplantation is dependent upon the availability of a suitable kidney, either through a cadaver (deceased) donor, or a living (related or non-related) donor, and these donors are not always available. In the most recent data reported (December 31, 2007), 1264 of the 9642 people receiving dialysis in Australia were waiting for a kidney transplant (Kidney Health Australia, 2009). Although the majority of transplanted kidneys come from a cadaver donor, such donors are limited, and living organ donation has become another viable alternative (Olbrisch, Benedict, Haller, & Levenson, 2001).

This study was designed to provide insight into the experience of living donors that could be utilized in the development of strategies directed at attracting and informing future organ donators. The mortality, health, and experiences of living kidney donors following transplantation has generally been reported favorably in the literature (Binet et al., 1997; Corley, Elswick, Sargeant, & Welch, 2000; Johnson et al., 1999; Peters et al., 2002). However, negative experiences, especially psychological, are apparent in previous research, which could raise concerns for potential donors. Boulware et al. (2002) identified concerns in potential donors regarding risk of complications, hospital stay, time off work, pain, and financial concerns. The authors suggested that education was a key factor in reducing concerns and attracting persons to donate.

It is essential that the experiences of living renal donors be explored and understood in order to provide strategies to optimize their experiences. This is not only important for those donors currently going through the procedure, but for those who may be considering donation.

Methods

The aim of the study was to explore and describe the experiences of persons who had donated a kidney within Western Australia. The initial report of the study results described the experiences of living renal donors prior to transplantation (Williams et al., 2007). This article describes the results of that study, which focused on the initial and long-term physical and psychological experiences following surgery.

Design

The qualitative method of grounded theory was used in this research (Glaser & Strauss, 1967). Following ethical approval, data were collected by tape-recorded formal interviews with persons who had donated a kidney. Before the interviews commenced, a focus group was convened of 9 persons who had donated a kidney at the study hospital within the past 5 years. The information obtained from this session assisted in the development of the interview schedule in the main study (Williams et al., 2007).

Initially, one acute care hospital setting was accessed. A senior nurse was approached and asked to provide a list of persons who had recently donated a kidney. A research assistant then contacted potential participants (either by telephone or letter) to explain the purpose of the study and to invite participation. Participants from other hospitals were also recruited through the use of a newspaper advertisement.

Data Analysis

Interview transcripts were transcribed verbatim and analyzed using the constant comparative method of analysis (Glaser & Strauss, 1967). Analysis reached a descriptive rather than theoretical level. A qualitative computer software program was used as a tool to manage the data. A number of strategies were used to ensure that the rigor of the research methodology was addressed, which included peer review. In addition, supplementary data provided by one of the investigators from 19 interviews with kidney donors were used to verify the results (O'Driscoll, 2008).

Results

The primary data for this study were obtained from 18 interviews with living renal donors. Most of the participants had donated their kidney during the past 12 months, although for 5 of the participants, the donation had occurred between 3 to 11 years. The majority of donors interviewed were female (14), with ages ranging from 26 to 64 years. At the time of the interview, most of the recipients (14) were reported to be doing well. However, one recipient had rejected the donated kidney, and one recipient was currently experiencing graft failure.

Experience Categories

Two main categories described the experiences of living renal donors following the donation surgery, which related to physical and psychological reactions.

Physical Reactions

There were both positive and negative reactions physically by donors following the surgery. These are represented by the categories "not feeling any different" and "physical discomforts."

Not feeling any different. The majority of donors interviewed made the comment that they didn't feel any different physically following the donation of the kidney. One said: "It was just gone ... like having a tooth out I suppose." (KD10) Another said:
   ... I don't even notice ...  I haven't got a
  kidney anymore ...  I don't ... notice it in
  my day-to-day life, I don't even think
  about it; it makes absolutely no difference
  to me ...  (KD02)


Some donors mentioned that other people had told them that they would go through a grieving process. However, at the time of the interviews, there was no evidence of this occurring from any of the participants. One donor said:
   ... One of the things that somebody
  said, "Oh, a lot of people go through a
  real grieving process because they've
  lost part of them ...  And I went, 'Oh
  for goodness sake, don't you just see
  those kidneys in the butcher's shop
  window? ... It's not like I'm losing a
  baby here; I'm losing an inanimate
  object that I really don't need anyway.'
  So ... no, there was no grieving over losing
  something at all. (KD11)


Another donor said:
   I don't actually feel like I had to
   mourn for that kidney to go because
   it's not really gone, it's gone into my
   father. I can still see it. (KD14)


Physical discomforts. A number of physical discomforts were described by the donors following surgery. For some donors, pain was described in the first few days following surgery, and for some, this had been extreme:
   The next thing I wake up ... in a [big]
   load of pain ... for three days I was ... in
   a fair bit of pain ...  And I didn't realize
   how painful it was until I tried to
   get up the next ... I virtually just
   crawled on my feet and it felt like
   being hit by a truck ... that's the only
   way I can describe it because the whole
   body was just [weak]. (KD 18)


Four donors who were interviewed had negative reactions to different analgesic drugs they were given following surgery. Tiredness was another physical discomfort experienced by the donors. This varied between donors. For some, it was just experienced for a few weeks; for others, this extended into months.

A number of donors commented that their recovery had been slower than expected and that they had been restricted in the things that they could do for several months:
   Well my recovery was ... fairly slow. l
   mean, at six months now, I'm probably
   just ... doing the things that I
   always used to do around the place,
   the heavy physical stuff ... (KD01)


Five donors interviewed had experienced complications from surgery. For one, this complication had been life-threatening, and she had spent some time in the intensive care unit following surgery. Another donor noted that the recovery of the recipient of the kidney had been quicker and less complicated than his recovery.

Psychological Reactions

There were both positive and negative reactions psychologically by the donors following the surgery. These are represented by the categories "personal positive feelings" and "emotional discomforts."

Personal positive feelings. The personal positive feelings of the donors following donation were very evident in the data. These feelings were described by a donor as:
   ... The best thing that you could ever
   think of..probably the best feeling I've
   ever had in my life ... when you actually
   donate to someone, it is a fantastic
   experience ... you just come out of hospital
   pumped up, really. I mean, you
   just feel so great ...  You sort of come out
   thinking, 'Well I can do anything.
   Bring it on!' You're sort of
   Superman ... it is probably the biggest
   thing ... mentally and physically that
   I've ever done and probably ever will
   do. There's no doubt about that in my
   mind. I can't see anything surpassing
   it really ...  (KD01)


The donors acknowledged that it was not an easy thing to do, and there had been some discomfort to endure, but despite that, positive feelings were paramount:
   [I am feeling] wonderful ...  I have [gotten]
   over it well and [am] truly over
   the worst of it ... but I would do it
   again ... if I could and it was needed.
   (KD13)


Observing the improvement in the health of the recipient was said to be immensely satisfying to the donors. For example, one said:
   Just to see my father [recipient] happy,
   not grouchy ... able to eat what he
   wants ... just to see my mum so happy
   now too ... just to see my dad not having
   to worry about dialysis and getting
   back to a normal life was just huge to
   see and ... [it] warms me greatly to see
   that. (KD14)


Some donors talked about how their outlook on life had changed since the donation:
   ... We've started a new life, and we're
   really enjoying life. And it's made as
   do things, like buy a motor
   home ... because life is so short and ... it
   can be taken from you anytime. Do
   what you want to do now, and we're
   doing it, and we're loving it ...  (KD12)


Emotional discomfort. A number of emotional discomforts were described by donors following surgery. Frustration and boredom in the first few days and weeks were common discomforts experienced by donors:
   It's just the fact that you can? ... do
   anything physically and the fact that
   you need to ... sort of stay indoors, and
   you just can't do what you used to do,
   so it does get a little frustrating when
   you can't go outside ... and the fact that
   your wife has got to do some of the
   stuff that you used to do. (KD01)


Two donors described experiencing sadness and depressed feelings in the months following surgery:
   Afterward ... about five months ... I just
   felt different ... in myself ... I don't know
   what the word is ... I just didn't feel
   right. Like I'd be ... wanting to cry all
   the time when I don't cry and ... stuff
   like that, and then I thought, 'Oh
   maybe the whole experience ...  I've
   come down off this big high, and now
   it's just hitting me ...  booff!' You know,
   "This is what you've done' ... I don't
   know if it's a psychological thing after
   an operation that you go through ...
   (KD03)


After surgery, some donors had concerns about the recipient of the kidney and if the recipient would be all right with the donated kidney:
   It was a worry for me, not in the fact
   that he [the recipient] ... could lose
   it ... it was more a worry in the fact
   that he's just my uncle ...  (KD02)


The fear of rejection was a huge concern for the donors:
   I was a bigger wreck afterwards when
   [the recipient] had a lot of rejection ... I
   think that was the hardest part ... not
   that I was thinking, 'Oh she might
   lose the kidney, or I've wasted a kidney.'
   I was more unhappy for her
   because ... we'd been so positive about
   the transplant ... I was frightened that
   she was going to lose it. Not for my
   sake, but for her sake. I couldn't have
   cared less ... but for her sake, I was terribly
   worried ... I was disappointed for
   her ... I wasn't disappointed for
   myself ...  (KD10)


This concern was exacerbated for one donor because the recipient was participating in activities that would put her health and chances of life with a new kidney at risk:
   When you see [the recipient] not
   doing ... the right thing, it's hard being
   a donor and a carer and a mother ... it's
   really hard when you see your daughter
   abusing it. Yes, it is a gift, and I
   gave it freely, and I'm thankful that
   I've given it ... and I'm pleased it was a
   good match, and it lasted as long as it
   did, but I think it must have been
   as ... tough as an old boot ... to last as
   long as it did with the abuse that she
   gave it ...  (KD08)


Discussion

This project provides in-depth insight into the physical and psychological experiences of living renal donors following donation. Two main categories were identified that described the experiences of living renal donors following the donation surgery. These categories related to positive physical and psychological reactions.

Physical reactions to donation consisted of two sub-categories: not feeling any different and physical discomforts. In another study exploring the experiences of 12 living renal donors in Norway using a qualitative approach, the category of "not feeling any different" was also apparent (Anderson et al., 2005). As in this current study, feelings of loss for the kidney were not apparent in any of the persons interviewed. However, similarly, physical discomforts were also experienced, with pain and nausea being the main physical reactions described in the first week after surgery. Another qualitative study that explored the experiences of spousal support of living renal donors in the United States discovered that all donors found that pain was a problem following surgery (Taylor & McMullen, 2008). Participants in that study (the husbands of donors) also noted that the information they had been provided with prior to donation had not indicated pain could be such an issue

Donation is considered a relatively safe procedure, and the expectation would be that the majority of donors would not feel any physical difference once healing from surgery had occurred (Isotani et al., 2002). However, a number of physical risks or complications for living renal donors have been previously identified in the literature. It has been noted that the risk of complications occurring in the period immediately following surgery varies between transplant centers, and the risk of these events occurring is indicated as being low (Iglesias-Marquez, Calderon, Santiago-Delpin, Rive-Mora, & Gonzalez-Caraballo, 2001; Liu, Marvin, & Hardy, 2001).

In a study of 100 living renal donors in the United States, minor post-operative complications were recorded in 21 donors, and more severe complications occurred for 7 donors (Peters et al., 2002). All donors in that study had returned to their normal health status by 6 weeks following surgery. The investigators noted that the complications recorded in that study were commonly experienced by any person undergoing major surgery. In a recent study of 32 donors in Western Australia, 3 donors experienced major complications that required re-admission to hospital (O'Driscoll, 2008). In that study, the investigator suggested that the first year following donation could be the most difficult.

Improvements in surgical techniques and management of surgical patients would have no doubt affected the rates of complications experienced. The move to laproscopic surgery in recent years, in particular, has contributed to shorter hospital stays and less pain in the period following surgery (Peters et al., 2002). Five patients interviewed had their surgery performed between 3 to 11 years previously.

Recart et al. (2005), explored the effect of a Fast-Track recovery strategy on patients undergoing laproscopic nephrectomy. In that study, 12 patients received the standard care, and 13 received Fast-Track care, which consisted " ... of a multimodal perioperative treatment regimen involving non-opioid analgesics, gastrointestinal supplements, early enteral nutrition, and early mobilization" (Recart et al., 2005, pp. 1165-1166). Although this was only a pilot study, patients who received the Fast-Track regime were discharged earlier, had less pain and nausea, and were more satisfied with pain management. This study illustrates that the experience of living renal donors would possibly vary depending on the regime used at the particular hospital in which the operation took place. The donors in this current study described experiences relating to a number of different hospitals in Australia, and this needs to be considered when interpreting the results.

Psychological reactions to donation consisted of two sub-categories: personal positive feelings and emotional discomforts. Positive feelings were also found in the qualitative study by Anderson et al. (2005). The donation was considered by donors in that study as a meaningful action that was very important and positive. In addition, personal growth and development were also said to have occurred. The majority of donors in this study said that despite the discomforts they had experienced, they would chose to donate again. Similar findings have been found in other studies (Brown et al., 2008; Fisher, Kropp, & Fleming, 2005; Isotani et al., 2002).

Emotional discomforts were apparent in this study and have been found in previous research. For example, Taghavi, Mahdavi, and Toufani (2001) found evidence of depression and obsession in persons who had donated a kidney. The suicide of a minority of donors has been reported in other older studies (Binet et al., 1997; Johnson et al., 1999). Financial burdens have also been recognized (Johnson et al., 1999; Peters et al., 2002).

Implications for Nephrology Nursing Practice

This study has provided insight into the real life experience of donating a kidney. As such, it may be useful to persons considering the idea of living renal donation. For those caring for donors, these insights could be incorporated into written information provided to potential living renal donors. It has been suggested that the provision of written information should be mandatory for all donors (Lennerling & Nyberg, 2004). Education forums, as well as one-on-one sessions with potential donors, are other methods by which insights could be imparted.

This qualitative project was carried out in Western Australia and cannot be generalized to other populations. However, it is anticipated that donors elsewhere may recognize and relate to the experiences of donors described here. The insights provided in this project into the exact nature of difficulties experienced by people who have donated a kidney (both physical and psychological) provide direction for healthcare professionals in terms of the type and timing of support provision. The identification of difficulties, both physical and psychological, confirms previous findings, although there are indications that new strategies may reduce the impact of these difficulties. However, a recent editorial by Glannon (2008) has questioned whether it is morally acceptable for physicians to allow healthy persons to expose themselves to personal health risks through the process of donation. This is an ethical question requiring careful consideration.

Acknowledgments: This project was funded by Edith Cowan University Industry Collaboration Scheme and Sir Charles Gairdner Hospital. The following individuals are thanked for their support and contribution to the project: Ros Elmes, Karen Howden, Professor Linda Kristjanson, Dr. Grant Luxton, Mr. Andrew Mitchell, and Adjunct Associate Professor Luc Delrivieve.

References

Anderson, M.H., Mathisen, L., Oyen, O., Wahl, A.K., Hanestad, B.R., & Fosse, E. (2005). Living donors' experiences 1 week after donating a kidney. Clinical Transplantation, 19(1), 90-96.

Binet, I., Bock, A.H., Vogelbach, P., Gasser, T., Kiss, A., Brunner, F., et al. (1997). Outcome in emotionally related living kidney donor transplantation. Nephrology Dialysis Transplantation, 12(9), 1940-1948.

Boulware, L.E., Ratner, L.E., Sosa, J.A., Tu, A.H., Simpkins, C.E., Durant, R.W., et al. (2002). The general public's concerns about clinical risk in live kidney donation. American Journal of Transplantation, 2(2), 186-193.

Brown, J.B., Karley, M.L., Boudville, N., Bullas, R., Garg, A.X., & Muirhead, N. (2008). The experience of living kidney donors. Health and Social Work, 33(2), 93-100.

Corley, M.C., Elswick, R.K., Sargeant, C.C., & Welch, J.L. (2000). Attitude, self-image, and quality of life of living kidney donors: Commentary and response. Nephrology Nursing Journal, 27(1), 43-52.

Fisher, P.A., Kropp, D.J., & Fleming, E.A. (2005). Impact on living kidney donors: Quality of life, self image and family dynamics. Nephrology Nursing Journal, 32(4), 489-501.

Glannon, W. (2008). Underestimating the risk in living kidney donation.Journal of Medical Ethics, 34(3), 127-128.

Glaser B.G., & Strauss, A. (1967). The discovery of grounded theory: Strategies for qualitative research. London: Weidenfeld & Nicolson.

Iglesias-Marquez, R.A., Calderon, E.A., Santiago-Delpin, E.A., Rive-Mora, E., & Gonzalez-Caraballo, Z. (2001). The health of living kidney donors 20 years after donation. Transplantation Proceedings, 33(1), 2041-2042.

Isotani, S., Fujisa, M., Ichikawa, Y., Ishimura, T., Matsumoto, O., Hamami, G. et al. (2002). Quality of life of living kidney donors: The short-form 36-item health questionnaire survey. Urology, 60(4), 588-592.

Johnson, E. M., Anderson, J.K., Jacobs, C., Suh, G., Humar, A., Suhr, B.D., et al. (1999). Long-term follow-up of living kidney donors: Quality of life after donation. Transplantation, 67(5), 717-721.

Kidney Health Australia. (2009). Fast facts in CKD in Australia. Melbourne, Victoria, Australia: Author. Retrieved July 1, 2009, from http://www.kidney.org.au/KidneyDisease/FastFacts onCKDinAustralia/tabid/589/Default.aspx

Lennerling, A., & Nyberg, G. (2004). Written information for potential living kidney donors. Transplant International, 17(8), 449.

Liu, E.H., Marvin, M.R., & Hardy, M.A. (2001). Living kidney donation. Transplantation Proceedings, 33(1-2), 817-818.

O'Driscoll, C. (2008). A study to determine the quality of life and experiences for liver and kidney transplant recipients and living donors in Western Australia: The economic implications. Unpublished Doctor of Philosophy Thesis, University of Western Australia.

Olbrisch, M.E., Benedict, S.M., Haller, D.L., & Leverson, J.L. (2001). Psychosocial assessment of living organ donors: Clinical and ethical considerations.

Progress in Transplantation, 17(1), 40-49.

Peters, T.G., Repper, S.M., Vincent, M., Schonberg, A., Cruz, I., Charlton, R.K., et al. (2002). One hundred consecutive living kidney donors: Modern issues and outcomes. Clinical Transplantation, 16(Suppl. 7), 62-68.

Recart, A., Duchene, D., White, RE, Thomas, T., Johnson, D.B., & Cadeddu, J.A. (2005). Efficacy and safety of Fast-Track recovery strategy for patients undergoing laparascopic nephrectomy. Journal of Endourology, 19(10), 1165-1169.

Taghavi, R., Mahdavi, R., & Toufani, H. (2001). The psychological effects of kidney donation on living kidney donors (related and unrelated). Transplantation Proceedings, 33(5), 2636-2637.

Taylor, L.A., & McMullen, P. (2008). Living kidney organ donation: Experiences of spousal support of donors. Journal of Clinical Nursing, 77(2), 232-241.

Williams, A.M., Broderick, D., O'Driscoll, C., Elmes, R., Luxton, G., Mitchell, A., et al. (2007). Development of a donor-driven assessment protocol in Western Australia based on experiences of living renal donors. Xephrology Nursing Journal, 34(1), 66-70.

Anne M. Williams, PhD, RN, is an Associate Professor, Western Australian Centre for Cancer and Palliative Care, Curtin University of Technology, Health Research Campus, Perth, Western Australia, and a Research Consultant, Centre for Nursing Research, Sir Charles Gairdner Hospital, Nedlands, Western Australia. She was employed by Edith Cowan University, Perth, Western Australia, at the time of data collection for this project.

Linda Colefax, Dip App Sc, Grad Cert (Nephrology), RN, is a Renal Transplant Clinical Nurse Consultant, Sir Charles Gairdner Hospital, Nedlands, Western Australia.

Catherine T. O'Driscoll, PhD, RN, is a Clinical Nurse Manager, Sir Charles Gairdner Hospital, Nedlands, Western Australia.

Sky Dawson, MSc, OT, is a Project Manager, Western Australian Centre for Cancer and Palliative Care, Curtin University of Technology, Health Research Campus, Perth, Western Australia.
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Author:Williams, Anne M.; Colefax, Linda; O'Driscoll, Catherine T.; Dawson, Sky
Publication:Nephrology Nursing Journal
Article Type:Report
Geographic Code:8AUST
Date:Jul 1, 2009
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