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
Résumé
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 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.
Origine : Fichiers produits par l'(les) auteur(s)
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