title: Personal decision-making processes for living related liver transplantation in children.
abstract: Living related liver transplantation (LRLT) is a valuable transplant option for children with end-stage liver disease who face long waiting times on regular waiting lists. The subjection of a healthy adult to a potentially life-threatening operation can raise issues of freedom of choice, fear, and family conflict for the potential donors. We examined attitudes, fears, and influencing factors in the decision-making process for living liver donation for children in order to identify factors to improve support for living liver donors in the future. In a retrospective, questionnaire-based survey of 93 adults evaluated for living liver donation between 1997 and 2010, 47 of whom actually proceeded to donation, we asked about attitudes, motivation, fears, influencing factors, and well-being during the LRLT evaluation process and during the donation period. Answers were recorded on Likert scales and compared with Pearson's rho correlation and the Mann-Whitney U test as appropriate. Although there was a strong sense of a lack of alternatives among the donors, the majority of the donors felt free in their decision to donate. Donors who were asked to donate for a relative who was not their own child appeared at higher risk of lacking support and of feeling coerced. Family and social support and good and empathic information about the donation process were identified as key factors for donor well-being. In conclusion, potential living liver donors need to have adequate, sufficient, and empathic information, and they need to be provided a supportive framework, including family support, in order to promote their well-being. Care needs to be taken in identifying and counseling potential donors at risk of feeling coerced into donation.
authors.affiliation: Pediatric Gastroenterology and Hepatology, Children's Hospital, and, Hannover Medical School, Hannover, Germany.
authors.forename: Imeke
authors.initials: I
authors.lastname: Goldschmidt
authors.forename: Katarina
authors.initials: K
authors.lastname: Migal
authors.forename: Norbert
authors.initials: N
authors.lastname: Rückert
authors.forename: Rolf
authors.initials: R
authors.lastname: van Dick
authors.forename: Eva Doreen
authors.initials: ED
authors.lastname: Pfister
authors.forename: Thomas
authors.initials: T
authors.lastname: Becker
authors.forename: Nicolas
authors.initials: N
authors.lastname: Richter
authors.forename: Frank
authors.initials: F
authors.lastname: Lehner
authors.forename: Ulrich
authors.initials: U
authors.lastname: Baumann
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D002780:Cholestasis, Intrahepatic / Q000601:surgery; D003657:Decision Making; D004645:Empathy; D058625:End Stage Liver Disease / Q000601:surgery*; D005192:Family Health; D005239:Fear; D005260:Female; D006801:Humans; D007223:Infant; D016031:Liver Transplantation / Q000523:psychology*; D019520:Living Donors; D008297:Male; D008875:Middle Aged; D009042:Motivation; D017044:Polycystic Kidney, Autosomal Recessive / Q000601:surgery; D011795:Surveys and Questionnaires; D009927:Tissue and Organ Procurement / Q000379:methods; D016896:Treatment Outcome; D055815:Young Adult