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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:
- HUYARD Caroline
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 37(4), December 2012, pp.315-323.
- Publisher:
- Taylor and Francis
A study conducted in France, Belgium and Germany investigated what type of information prospective parents need for decision-making about continuing or terminating a pregnancy in the case of a condition predisposing to intellectual disability. 33 parents whose young or adult children had an intellectual disability were recruited through self-help groups, and took part in semi-structured interviews covering discovery of the syndrome, parenting practices, moral feelings regarding the child's behaviour, and personal dimensions of the experience of having such a child. Data analysis focusing on decision-making highlighted the importance of 3 types of information: the foetus as a future child and individual person, the couple as future parents, and the social environment of the future child and his or her parents and its capacity to support them. The article discusses these categories of information in relation to the decisions the interviewees retrospectively considered they would have made had they known about their child's syndrome at a prenatal stage. It includes quotations from participants. The authors conclude that their findings demonstrate that prospective parents' essential information needs are not limited to medical information.