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.


METHODS
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.
Institut für Sozialforschung an der Goethe Universität, Frankfurt am Main, Germany. c.huyard@orange.fr
Caroline
C
Huyard
D000223:Adaptation, Psychological; D000328:Adult; D001530:Belgium; D003657:Decision Making; D005260:Female; D005602:France; D005858:Germany; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008607:Intellectual Disability / Q000175:diagnosis* / Q000523:psychology; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011247:Pregnancy; D011248:Pregnancy Complications; D011296:Prenatal Diagnosis / Q000523:psychology*; D011446:Prospective Studies; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D013577:Syndrome; D055815:Young Adult