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台湾和英国自闭症儿童的兄弟姐妹的成长经历。

Siblings' experiences of growing up with children with autism in Taiwan and the United Kingdom.

机构信息

Moray House School of Education, The University of Edinburgh, St John's Land, Holyrood Rd, Edinburgh, EH8 8AQ, UK.

Moray House School of Education, The University of Edinburgh, St John's Land, Holyrood Rd, Edinburgh, EH8 8AQ, UK.

出版信息

Res Dev Disabil. 2018 Dec;83:206-216. doi: 10.1016/j.ridd.2018.09.001. Epub 2018 Sep 22.

Abstract

BACKGROUND

A child's diagnosis of autism impacts their whole family, in both positive and negative ways, that may be influenced by cultural beliefs.

AIMS

We aimed to describe the experiences of mothers and typically-developing siblings of children with autism in two cultural contexts.

METHODS

Fourteen mother-sibling dyads from Taiwan and the UK participated in semi-structured interviews.

RESULTS

Whilst there were similarities in sibling experiences, a negative tone regarding the influence of autism was more evident in Taiwan, where families also cited societal judgement and cultural-specific expectations. In the UK, a more balanced tone was apparent: mothers emphasised educating and involving the siblings. It is speculated that UK siblings had a greater understanding of their parents' stress, leading to more adaptive family dynamics. Various types of support service were mentioned in the UK, whereas the availability of social services and support appeared to be relatively limited in Taiwan.

IMPLICATIONS

Our data suggest that cultural context may have a significant impact on the responses of the family members. This is mediated by both differences in attitudes and traditions, and availability of resources. Support for family members needs to be sensitive to such cultural differences, as well as recognising positive experiences.

摘要

背景

儿童自闭症的诊断会对整个家庭产生积极和消极的影响,这种影响可能受到文化信仰的影响。

目的

我们旨在描述来自台湾和英国的自闭症儿童的母亲和典型发展的兄弟姐妹在两种文化背景下的经历。

方法

来自台湾和英国的 14 对母子/姐弟参与了半结构化访谈。

结果

虽然兄弟姐妹的经历有相似之处,但在台湾,对自闭症影响的负面评价更为明显,家庭还提到了社会评判和文化特有的期望。在英国,更明显的是一种更为平衡的语气:母亲强调教育和参与兄弟姐妹。据推测,英国的兄弟姐妹对父母的压力有更深刻的理解,从而导致更适应的家庭动态。在英国提到了各种类型的支持服务,而在台湾,社会服务和支持的可及性似乎相对有限。

影响

我们的数据表明,文化背景可能对家庭成员的反应产生重大影响。这受到态度和传统差异以及资源可用性的影响。对家庭成员的支持需要考虑到这些文化差异,同时也要认识到积极的体验。

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