Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum
Understanding carers' lived experience of stigma: the voice of families with a child on the autism spectrum
复制标题
DOI：
10.1111/hsc.12297
复制
发表时间：
2017-01-01
影响因子：
2.4
通讯作者：
Morse, Corinne
中科院分区：
文献类型：
--
作者：
Broady, Timothy R.;Stoyles, Gerard J.;Morse, Corinne
现有的研究表明，照顾自闭症儿童面临着几个独特的挑战。尽管关于自闭症谱系障碍及其患病率的证据越来越多，但自闭症谱系上的儿童及其家人继续在整个社区感受到来自各种来源的污名。这些对耻辱的看法可能深刻地影响这些儿童及其照顾者的生活质量。这项探索性研究试图调查照顾者在照顾高功能自闭症儿童时对耻辱的看法。来自悉尼和澳大利亚新南威尔士州南海岸地区的15名照顾者参加了关于他们的关怀经历和任何感觉到的耻辱的半结构化访谈。确定了污名化经历的四个领域：(一)缺乏知识，(二)判断，(三)拒绝和(四)缺乏支持。据报告，这些域名分别存在于四个主要背景下：(I)学校、(Ii)公共领域、(Iii)家庭和(Iv)朋友。这些领域和背景建立了一个框架，详细说明了照顾者如何以及在哪里感受到污名，包括建议通过四个领域进行污名处理。感觉到耻辱的主要背景似乎也是相关的，那些在一种背景下经历过耻辱的照顾者更有可能在其他背景下报告类似的经历。因此，任何试图在面对耻辱的情况下赋予照顾者权力的尝试都应该考虑到这些领域中的每一个，连接它们的途径以及不同社会背景之间的关系。通过确定这一途径，支助服务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，从而为途径的相关阶段提供适当的干预或支持。
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.