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中国自闭症谱系障碍患儿家长的韧性:社会文化视角

The resilience of parents who have children with autism spectrum disorder in China: a social culture perspective.

作者信息

Zhao Meiju, Fu Wangqian

机构信息

Faculty of Children Development and Education, China Women's University, Beijing, China.

China Institute of Education and Social Development, Beijing Normal University, Beijing, China.

出版信息

Int J Dev Disabil. 2020 Apr 13;68(2):207-218. doi: 10.1080/20473869.2020.1747761. eCollection 2022.

Abstract

BACKGROUND

Parenting children with autism spectrum disorder (ASD) continues to be challenging worldwide, especially in the Chinese context where there lacks support for parents.

METHOD

Five parents of children with ASD of high level of resilience in China were interviewed about their experiences of raising children with ASD and influencing factors of developing resilience.

RESULTS

Findings highlighted the process of developing resilience shaping from the interaction between different social system, including introspect and self-cultivation in micro system, acceptance of ASD, playing various roles for their children, and expanded social network in the interactions between micro and mezzo systems and accept the worst results in the interactions between micro and macro systems. The characteristics of resilience for Chinese parents of children with ASD were that parents built positive relationships with themselves and outsides though active interaction and changed their social environment as an outcome.

CONCLUSION

The results of this study may reveal the process and characteristics of resilience for Chinese parents having children with ASD, which can be a starting point for other parents to understand and learn from them. Besides, it provides insight for service providers into paying attention to the whole experience of parents and help them to expand the relative network to support them.

摘要

背景

在全球范围内,养育患有自闭症谱系障碍(ASD)的孩子仍然具有挑战性,在中国这样缺乏对家长支持的环境中尤其如此。

方法

对中国五位具有高复原力的自闭症谱系障碍患儿家长进行访谈,了解他们养育自闭症谱系障碍患儿的经历以及形成复原力的影响因素。

结果

研究结果突出了复原力形成过程是由不同社会系统之间的相互作用塑造的,包括微观系统中的内省和自我修养、对自闭症谱系障碍的接纳、为孩子扮演各种角色,以及在微观与中观系统相互作用中扩大社交网络,在微观与宏观系统相互作用中接受最坏结果。中国自闭症谱系障碍患儿家长的复原力特征是,家长通过积极互动与自己及外界建立积极关系,并因此改变其社会环境。

结论

本研究结果可能揭示了中国自闭症谱系障碍患儿家长复原力的过程和特征,这可以成为其他家长理解并向他们学习的起点。此外,它为服务提供者提供了见解,促使他们关注家长的整体经历,并帮助他们扩大相关网络以提供支持。

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