title: Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands.
authors.forename: Ingrid B
authors.initials: IB
authors.lastname: de Groot
authors.forename: Karen
authors.initials: K
authors.lastname: Schipper
authors.forename: Sandra
authors.initials: S
authors.lastname: van Dijk
authors.forename: Paul J M
authors.initials: PJ
authors.lastname: van der Boog
authors.forename: Anne M
authors.initials: AM
authors.lastname: Stiggelbout
authors.forename: Andrzej G
authors.initials: AG
authors.lastname: Baranski
authors.forename: Perla J
authors.initials: PJ
authors.lastname: Marang-van de Mheen
mesh_terms: D000533:Altruism; D059031:Anticipation, Psychological; D001294:Attitude to Health; D003657:Decision Making; D005069:Evaluation Studies as Topic; D005260:Female; D017144:Focus Groups; D006801:Humans; D007398:Interpersonal Relations; D016030:Kidney Transplantation / Q000523:psychology* / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D009042:Motivation; D009426:Netherlands; D014019:Tissue Donors / Q000523:psychology* / Q000706:statistics & numerical data*