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

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.

Keywords:

• prenatal diagnosis
• prenatal testing
• information needs
• information
• decision-making
• Down syndrome
• fragile X syndrome

Acknowledgements

I am grateful to Nick Jones for proofreading this text, and to two anonymous reviewers, whose comments strongly contributed to improving the manuscript. I very warmly thank all the interviewees for their contribution.

Author note

This research project was supported by a Marie Curie Intra European Fellowship within the 7th European Framework Programme and by the Maison des Sciences de l’Homme and the Thyssen Stiftung through a joint Clemens Heller grant. The funding bodies have imposed no restriction on free access to or publication of the research data. The author declares no financial or nonfinancial conflicts of interest.