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dc.creatorOrfali, Kristinaen
dc.creatorGordon, Elisa J.en
dc.date.accessioned2016-01-09T00:05:40Zen
dc.date.available2016-01-09T00:05:40Zen
dc.date.created2004en
dc.date.issued2004en
dc.identifierdoi:10.1007/s11017-004-3135-9en
dc.identifier.bibliographicCitationTheoretical Medicine and Bioethics 2004; 25(4): 329-365en
dc.identifier.urihttp://worldcatlibraries.org/registry/gateway?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Autonomy+gone+awry:+a+cross-cultural+study+of+parents'+experiences+in+neonatal+intensive+care+units&title=Theoretical+Medicine+and+Bioethics+&volume=25&issue=4&spage=329-365&date=2004&au=Orfali,+Kristina;+Gordon,+Elisa+J.en
dc.identifier.urihttp://dx.doi.org/10.1007/s11017-004-3135-9en
dc.identifier.urihttp://hdl.handle.net/10822/995527en
dc.description.abstractThis paper examines parents' experiences of medical decision- making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents' experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their child than American parents. Central to the French parents' perception of autonomy and their sense of satisfaction were the strong doctor-patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the "sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents' perspective, the lack of "emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of "rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices.en
dc.formatArticleen
dc.languageenen
dc.sourceeweb:266295en
dc.subjectAutonomyen
dc.subjectCaringen
dc.subjectCritically Illen
dc.subjectDoctorsen
dc.subjectIntensive Care Unitsen
dc.subjectInterviewsen
dc.subjectParentsen
dc.subjectPrognosisen
dc.subjectRightsen
dc.subjectUncertaintyen
dc.subject.classificationPatient Relationshipsen
dc.subject.classificationCultural Pluralismen
dc.subject.classificationAllowing Minors to Dieen
dc.subject.classificationHealth Care for Newborns and Minorsen
dc.titleAutonomy Gone Awry: A Cross-Cultural Study of Parents' Experiences in Neonatal Intensive Care Unitsen
dc.provenanceCitation prepared by the Library and Information Services group of the Kennedy Institute of Ethics, Georgetown University for the ETHXWeb database.en
dc.provenanceCitation migrated from OpenText LiveLink Discovery Server database named EWEB hosted by the Bioethics Research Library to the DSpace collection EthxWeb hosted by DigitalGeorgetown.en


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