Open Access Research article

Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes

Ingrid B de Groot1, Karen Schipper2, Sandra van Dijk3, Paul J M van der Boog4, Anne M Stiggelbout1, Andrzej G Baranski5, Perla J Marang-van de Mheen1* and the PARTNER-study group

Author Affiliations

1 Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands

2 Department of Medical Humanities, EMGO institute, VU Medical Center, Amsterdam, The Netherlands

3 Department of Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands

4 Department of Nephrology, Leiden University Medical Center, Leiden, The Netherlands

5 Department of Transplantation Surgery, Leiden University Medical Center, Leiden, The Netherlands

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BMC Nephrology 2012, 13:103 doi:10.1186/1471-2369-13-103

Published: 7 September 2012

Abstract

Background

Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced.

Methods

We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts.

Results

Most deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donor’s health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p = 0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced.

Conclusion

Expected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group.

Keywords:
Decision making; Donor-recipient relationship; Expectations; Kidney transplantation