NDT Advance Access published online on April 26, 2005
Nephrology Dialysis Transplantation, doi:10.1093/ndt/gfh861
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1 Department of Public Health and Caring Sciences, Unit of Health Services Research, Uppsala University, Uppsala, Sweden
* To whom correspondence should be addressed. Background. The rates of both genetic and non-genetic living donors are increasing. However, previous research has almost exclusively explored the decision-making of genetic donors. Therefore, in this study both genetic and non-genetic donors are investigated with focus on their whole donation process. Methods. Thirty-nine donors were interviewed the day before nephrectomy and 3 weeks afterwards. Twenty-three donors were genetic relatives, 16 were not. The interviews were analysed qualitatively, mainly by narrative structuring. Results. All donors but one passed seven steps in the donation process. They included: (i) awareness of suffering; compassion and empathy; (ii) imminence of transplantation; recognition of oneself as potential donor; (iii) information acquisition and deliberation; (iv) attribution of responsibility to oneself; announcement of decision to donate; (v) examination; maintaining the decision; (vi) facing nephrectomy; and (vii) postoperative experiences. Two types of decision-making were displayed: immediate and later announcement of decision. Half the donors belonged to each type. Various relationship groups displayed different types. The examination period was the most stressful time, partly due to imperfect coordination and excessive time-wasting. One-third found postoperative pain the most painful experience ever. There was a lack of attention to regressive needs and to recognition of the deed. Conclusions. The two types of decision-making seem similar in ethical requirements. It is not a genetic or non-genetic relationship per se that determines what kind of decision the donors make. Psychological support, especially during Steps 5 and 7, should be improved and the donors included in a structured donation programme. Possible health care ambivalence toward living donation should not affect the donors.
Received October 28, 2004
Accepted April 5, 2005
Original Articles
The donation process of living kidney donors
Margareta A. Sanner, E-mail: Margareta.Sanner{at}pubcare.uu.se
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