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唐氏综合征患儿的母亲:构建残疾的社会文化意义

Mothers of children with Down syndrome: constructing the sociocultural meaning of disability.

作者信息

Lalvani Priya

机构信息

Developmental Psychology, Graduate Center, City University of New York, New York, NY 10016, USA.

出版信息

Intellect Dev Disabil. 2008 Dec;46(6):436-45. doi: 10.1352/2008.46:436-445.

Abstract

A qualitative study explored mothers' experience of the birth of a child with Down syndrome within a sociocultural context. Nine mothers of children with Down syndrome were interviewed. Mothers discussed responses to their child's diagnosis as well as negative attitudes toward disability that were displayed by members of the medical community. The narratives highlight the process of meaning-making that these mothers engaged in, their resistance to the dominant discourse on disability, and their eventual transformations in perceptions of disability and motherhood. The study suggests that the meaning of Down syndrome may be culturally embedded and that mothers of children with Down syndrome locate their child's disability within a social environment.

摘要

一项定性研究探讨了母亲们在社会文化背景下生育唐氏综合征患儿的经历。对九位唐氏综合征患儿的母亲进行了访谈。母亲们讨论了对孩子诊断结果的反应,以及医疗界成员对残疾所表现出的消极态度。这些叙述突出了这些母亲所经历的意义构建过程、她们对关于残疾的主流话语的抵制,以及她们最终在残疾观念和母亲身份认知上的转变。该研究表明,唐氏综合征的意义可能在文化中有所体现,并且唐氏综合征患儿的母亲们将孩子的残疾置于社会环境中。

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