Department of Psychology, University of Strathclyde, Glasgow, UK.
Institute of Health & Wellbeing, Academic Centre, Gartnavel Royal Hospital, University of Glasgow, Glasgow, UK.
J Appl Res Intellect Disabil. 2020 Nov;33(6):1380-1389. doi: 10.1111/jar.12765. Epub 2020 Jul 26.
Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective.
An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9-16 years old.
All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights.
Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome.
患有唐氏综合征的年轻人及其家庭常常面临社会污名。本研究从母亲的角度探讨了这一问题。
采用解释现象学方法（IPA）探讨了母亲对其子女逐渐意识到自身残疾和相关社会污名的看法。对 9 名 9-16 岁唐氏综合征儿童的母亲进行了访谈。
所有母亲都对唐氏综合征的污名化状况非常敏感，并竭力保护孩子免受其影响。一些母亲曾与孩子谈论过唐氏综合征。其他母亲则仔细观察孩子是否准备好谈论这个话题。表面上，所有母亲都认为自己的孩子对唐氏综合征和污名的了解有限，但深入讨论揭示了更复杂的观点。
母亲们对何时以及如何与孩子谈论唐氏综合征表示不确定和焦虑。
