Decision-Making after Prenatal Diagnosis of a Syndrome Predisposing to Intellectual Disability: What Prospective Parents Need to Know and the Importance of Non-Medical Information

Autor/in	Huyard, Caroline
Titel	Decision-Making after Prenatal Diagnosis of a Syndrome Predisposing to Intellectual Disability: What Prospective Parents Need to Know and the Importance of Non-Medical Information
Quelle	In: Journal of Intellectual & Developmental Disability, 37 (2012) 4, S.315-323 (9 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1366-8250
DOI	10.3109/13668250.2012.726350
Schlagwörter	Decision Making; Clinical Diagnosis; Disability Identification; Pregnancy; Congenital Impairments; Genetic Disorders; Down Syndrome; Mental Retardation; Parents; Information Needs; Social Environment; Semi Structured Interviews; Foreign Countries; Belgium; France; Germany + Suchen Sie Ihr Suchwort? Decision-making; Entscheidungsfindung; Schwangerschaft; 'Downs Syndrome; Down''s Syndrome'; Down-Syndrom; Geistige Behinderung; Eltern; Information need; Informationsbedürfnis; Soziales Umfeld; Ausland; Belgien; Frankreich; Deutschland
Abstract	Background: Recently researchers have suggested that non-medical information may impact the decision to continue or terminate a pregnancy after a prenatal diagnosis. This study is an investigation of what type of information prospective parents need for this decision-making in the case of a condition predisposing to intellectual disability. Method: Semistructured interviews were conducted in France, Belgium, and Germany with 33 parents whose children have a syndrome that predisposes to intellectual disability. Results: The essential information related to three dimensions: (1) the foetus as a future child and an individual person; (2) the couple as future parents; and (3) the social environment of the future child and his or her parents, and especially the ability of the social environment to provide support. Conclusions: The findings introduce a new perspective on these prospective parents' essential needs, highlighting that these needs are not limited to medical information but encompass non-medical information and institutional patterns. (Contains 4 tables and 1 note.) (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2017/4/10