Title :

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

Author(s) :

Huyard, Caroline [Auteur]

Journal title :

Journal of Intellectual and Developmental Disability

Volume number :

37

Pages :

315-323

Publisher :

Taylor & Francis

Publication date :

2012

ISSN :

1366-8250

Keyword(s) :

Fragile X syndrome
Down syndrome
Decision making
Information
Prenatal diagnosis
Prenatal testing
Information needs

HAL domain(s) :

Sciences du Vivant [q-bio]/Ethique

English abstract : [en]

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 ...
Show more >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.Show less >

Language :

Anglais

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

CNRS
Université de Lille

Collections :

• Centre d'Études et de Recherches Administratives, Politiques et Sociales (CERAPS) - UMR 8026

Submission date :

2019-10-29T11:37:21Z