Huyard Caroline
Institut für Sozialforschung an der Goethe Universität, Frankfurt am Main, Germany.
J Intellect Dev Disabil. 2012 Dec;37(4):315-23. doi: 10.3109/13668250.2012.726350. Epub 2012 Oct 15.
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.
Semistructured interviews were conducted in France, Belgium, and Germany with 33 parents whose children have a syndrome that predisposes to intellectual disability.
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.
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.
最近，研究人员指出，非医学信息可能会影响产前诊断后继续或终止妊娠的决定。本研究旨在调查准父母在面对易导致智力残疾的疾病时，做出这一决策需要何种类型的信息。
在法国、比利时和德国对33名子女患有易导致智力残疾综合征的父母进行了半结构化访谈。
关键信息涉及三个方面：（1）胎儿作为未来的孩子和个体；（2）夫妻作为未来的父母；（3）未来孩子及其父母的社会环境，尤其是社会环境提供支持的能力。
研究结果为这些准父母的基本需求引入了新的视角，强调这些需求不仅限于医学信息，还包括非医学信息和制度模式。
