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.

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. [ABSTRACT FROM AUTHOR]