title: [Living organ donation vs. cadaveric donation - study of liver transplanted children and their families].
abstract: There is only scarce information on the quality of life of child recipients of liver transplants and their families. Particularly children with a living related graft and their families never have been compared to children who received a cadaveric graft and their families. We investigated the following issues in our study: How do parents and children from participating families rate their strain, their quality of life and their relationships within their family? Do families with a living - related donor differ from those with a cadaveric donor? What do living donors and their partners think about the donation retrospectively? The study was conducted with 106 participants from 50 families (42 mothers, 40 fathers, and 24 children older than 6 years). In 20 of these families, a living transplantation had been performed. Participants were interviewed and asked to fill out several questionnaires. School-aged children with a liver transplant show good social integration among their peers and in school. The child's disease, however, has a great impact on the family. Family members show a reduction in social contact, and an increase in marital crises, and problematic relations amongst siblings. Families in which a cadaveric graft was performed, are less satisfied with life, and show more symptoms of exhaustion. Every family studied possessed or acquired - a high degree of internal or external coping resources. Living - related donors tried hard to obtain an understanding of the medical context. The partner, rather than the donor himself, feels anxious before the donation. The limited time available for the decision to donate is not perceived by the donors to be critical. Ten percent of living donors feel "a little" that their health is affected. The decision to donate is supported "strongly" or "very strongly" by the partners in 80 % of the cases. A possible strain on the child through the expectation of gratitude by the donor is stated by 20 %. All of the donors agree that if they were to be asked today, they would donate again, only one of the partners raised objections. In summary, as a retrospective pilot study, this study primarily generates hypotheses rather than testing them and helps to develop research tools for the field. Results suggest that a psychological support be made available both prior to and following the operation, not only for the children but also for their families, with particular attention to the partners of the living donors and the siblings of the affected children.
authors.affiliation: Abteilungen für Medizinische Psychologie, Hepatobiliäre Chirurgie und Hepatologie und Gastroenterologie der Universitätskinderklinik, Universitätsklinikum Hamburg-Eppendorf, Hamburg.
authors.forename: K H
authors.initials: KH
authors.lastname: Schulz
authors.forename: C
authors.initials: C
authors.lastname: Hofmann
authors.forename: K
authors.initials: K
authors.lastname: Sander
authors.forename: S
authors.initials: S
authors.lastname: Edsen
authors.forename: M
authors.initials: M
authors.lastname: Burdelski
authors.forename: U
authors.initials: U
authors.lastname: Koch
authors.forename: X
authors.initials: X
authors.lastname: Rogiers
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003625:Data Collection; D005195:Family Relations; D005260:Female; D006801:Humans; D016031:Liver Transplantation / Q000523:psychology*; D019520:Living Donors / Q000523:psychology*; D008297:Male; D011788:Quality of Life; D014019:Tissue Donors / Q000523:psychology*
vernacular_title: Lebendspende vs. Fremdspende - eine katamnestische Studie lebertransplantierter Kinder und ihrer Familien.