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理解照顾者对污名的切身感受:来自有自闭症谱系障碍儿童家庭的声音。

Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum.

作者信息

Broady Timothy R, Stoyles Gerard J, Morse Corinne

机构信息

Carers NSW, Sydney, NSW, Australia.

School of Psychology, University of Wollongong, Wollongong, NSW, Australia.

出版信息

Health Soc Care Community. 2017 Jan;25(1):224-233. doi: 10.1111/hsc.12297. Epub 2015 Oct 22.

Abstract

Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike. This exploratory study sought to investigate carers' perceptions of stigma in caring for a child with high functioning autism. Fifteen carers from Sydney and the South Coast regions of New South Wales, Australia, participated in semi-structured interviews regarding their caring experiences and any perceived encounters with stigma. Four domains of stigmatising experiences were identified: (i) lack of knowledge, (ii) judgement, (iii) rejection and (iv) lack of support. These domains were each reported to exist in four main contexts: (i) school, (ii) public, (iii) family and (iv) friends. These domains and contexts established a framework which provided a detailed account of how and where carers felt stigmatised, including the suggestion of a stigmatising pathway through the four domains. The main contexts in which stigma was perceived also appeared to be related, with those carers who experienced stigma in one context being more likely to report similar experiences in other contexts. Any attempts to empower carers in the face of stigmatisation should therefore consider each of these domains, the pathway that connects them and the relationship between different social contexts. Through identifying this pathway, supportive services can be acutely aware of how carers may perceive potentially stigmatising experiences and therefore provide appropriate interventions or support for the relevant stage of the pathway.

摘要

现有研究表明,照顾自闭症谱系儿童存在若干独特挑战。尽管关于自闭症谱系障碍及其患病率上升的证据基础不断扩大,但自闭症谱系儿童及其家庭在整个社区中仍不断感受到来自各种来源的污名化。这些污名化认知会深刻影响这些儿童及其照顾者的生活质量。这项探索性研究旨在调查照顾者在照顾高功能自闭症儿童时对污名化的认知。来自澳大利亚新南威尔士州悉尼和南海岸地区的15名照顾者参与了关于他们的照顾经历以及任何感知到的污名化遭遇的半结构化访谈。确定了污名化经历的四个领域:(i)知识缺乏,(ii)评判,(iii)排斥和(iv)支持缺乏。据报告,这些领域分别存在于四个主要情境中:(i)学校,(ii)公共场所,(iii)家庭和(iv)朋友。这些领域和情境建立了一个框架,详细说明了照顾者在何处以及如何感到受到污名化,包括通过这四个领域的污名化路径的建议。感知到污名的主要情境似乎也相互关联,那些在一个情境中经历污名的照顾者更有可能在其他情境中报告类似经历。因此,任何在面对污名化时增强照顾者能力的尝试都应考虑这些领域中的每一个、连接它们的路径以及不同社会情境之间的关系。通过识别这条路径,支持性服务机构可以敏锐地意识到照顾者可能如何感知潜在的污名化经历,从而为该路径的相关阶段提供适当的干预或支持。

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