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对与智力残疾相关的自闭症谱系障碍患者及其家庭照顾者所经历的污名化的系统评价。

A Systematic Review of the Stigma Experienced by People with Autism Spectrum Disorder Associated with Intellectual Disabilities and by Their Family Caregivers.

作者信息

Meulien Clara, Baghdadli Amaria

机构信息

Centre d'excellence sur l'autisme et les Troubles du neuro-développementaux (CeAND), CHU Montpellier, 39 Avenue Charles Flahaut, 34295, Montpellier Cedex 05, France.

Faculté de Médecine, Université de Montpellier, UFR de médecine, Montpellier, France.

出版信息

J Autism Dev Disord. 2024 Jul 25. doi: 10.1007/s10803-024-06435-x.

Abstract

The purpose of this paper was to explore the social stigma experienced by individuals diagnosed with ASD+ID, and to identify knowledge gaps for future studies by conducting a systematic review of peer-reviewed literature. In this systematic review, we included 12 studies exploring the experience of stigma among people with ASD+ID and/or their caregivers. Our aim was to better understand this experience, but also to explore the strategies used to cope with stigma in this population. Our results confirmed that people with ASD+ID and their caregivers experience at least low to moderate levels of stigma, and that this experience is modulated by internal and external factors (such as parental age, mindfulness traits, ASD symptoms…). In addition, our results show the impact of stigma on community integration, psychological well-being and help-seeking behaviour. The role of family, friends and professional support, as well as the formation of networks to share information, appear in our results to be protective factors against stigma. To our knowledge, this study is the first systematic review to examine the stigmatisation of people with ASD+ID and/or their caregivers. Further research is needed to understand the perspective of people with ASD+ID themselves and to explore other factors that modulate this experience, in particular gender and ethnicity.

摘要

本文旨在探讨被诊断为患有自闭症谱系障碍合并智力障碍(ASD+ID)的个体所经历的社会污名,并通过对同行评审文献进行系统综述,找出未来研究的知识空白。在这项系统综述中,我们纳入了12项探讨ASD+ID患者及其照料者污名经历的研究。我们的目的不仅是为了更好地理解这种经历,还为了探究该人群应对污名所采用的策略。我们的研究结果证实,ASD+ID患者及其照料者至少经历了低至中度的污名,且这种经历受到内部和外部因素(如父母年龄、正念特质、ASD症状等)的调节。此外,我们的研究结果显示了污名对社区融入、心理健康和求助行为的影响。我们的研究结果表明,家庭、朋友和专业支持的作用,以及共享信息网络的形成,是抵御污名的保护因素。据我们所知,本研究是第一项系统综述,旨在考察ASD+ID患者及其照料者所遭受的污名化。需要进一步开展研究,以了解ASD+ID患者自身的观点,并探究调节这种经历的其他因素,特别是性别和种族。

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