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本文引用的文献

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Public knowledge and stigma of autism spectrum disorder: Comparing China with the United States.自闭症谱系障碍的公众知识和污名:中美比较。
Autism. 2020 Aug;24(6):1531-1545. doi: 10.1177/1362361319900839. Epub 2020 Apr 27.
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Grounded theory research: A design framework for novice researchers.扎根理论研究:新手研究者的设计框架。
SAGE Open Med. 2019 Jan 2;7:2050312118822927. doi: 10.1177/2050312118822927. eCollection 2019.
3
Influence of Community-Level Cultural Beliefs about Autism on Families' and Professionals' Care for Children.社区层面关于自闭症的文化观念对家庭和专业人员照顾儿童的影响。
Transcult Psychiatry. 2018 Oct;55(5):623-647. doi: 10.1177/1363461518779831. Epub 2018 Jul 4.
4
Affiliate stigma and depression in caregivers of children with Autism Spectrum Disorders in China: Effects of self-esteem, shame and family functioning.中国自闭症谱系障碍儿童照顾者的附属污名和抑郁:自尊、羞耻和家庭功能的影响。
Psychiatry Res. 2018 Jun;264:260-265. doi: 10.1016/j.psychres.2018.03.071. Epub 2018 Apr 3.
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Family Quality of Life Survey (FQOLS-2006): Evaluation of Internal Consistency, Construct, and Criterion Validity for Socioeconomically Disadvantaged Families.家庭生活质量调查(FQOLS - 2006):对社会经济弱势家庭的内部一致性、结构效度和效标效度的评估
Phys Occup Ther Pediatr. 2018 Feb;38(1):46-63. doi: 10.1080/01942638.2017.1311393. Epub 2017 May 8.
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Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families' Lives.了解自闭症谱系障碍儿童家长的耻辱感经历以及耻辱感在家庭生活中所起的作用。
J Autism Dev Disord. 2016 Mar;46(3):942-53. doi: 10.1007/s10803-015-2637-9.
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Resilience in families of children with developmental disabilities.发育障碍儿童家庭的复原力。
Fam Syst Health. 2013 Dec;31(4):396-405. doi: 10.1037/a0035059.
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Spanish family quality of life scales: under and over 18 years old.西班牙家庭生活质量量表:18岁以下及18岁以上人群
J Intellect Dev Disabil. 2013 Jun;38(2):141-8. doi: 10.3109/13668250.2013.774324. Epub 2013 Mar 22.
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Unhappy (and happy) in their own way: a developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism.以自己的方式不快乐(和快乐):发展心理病理学视角下自闭症和非自闭症发育障碍家庭的生活质量。
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跨文化视角下家庭生活质量的意义:比较韩国移民家庭和加拿大自闭症谱系障碍儿童的家庭。

Cross-cultural perspectives on the meaning of family quality of life: Comparing Korean immigrant families and Canadian families of children with autism spectrum disorder.

机构信息

Simon Fraser University, Canada.

The University of British Columbia, Canada.

出版信息

Autism. 2021 Jul;25(5):1335-1348. doi: 10.1177/1362361321989221. Epub 2021 Jan 22.

DOI:10.1177/1362361321989221
PMID:33482693
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8264625/
Abstract

The purpose of this study was to compare Korean immigrant families and Canadian families of children with autism in their perceptions and definitions of family quality of life. Interviews were done with 13 Korean immigrant parents and 12 Canadian parents of children with autism living in BC, Canada. For Korean immigrant families, three themes were identified: family cohesiveness, value orientation, and acceptance from society. For Canadian families, themes comprising family interactions, support, emotional well-being, individual characteristics, and comparisons to other families were essential elements in defining their family quality of life. The findings emphasize how differences in culture may impact how we understand and assess family functioning and quality of life. If research informing the development of these tools lacks cross-cultural perspectives, service providers and professionals may fail to address these families' unique needs.

摘要

本研究旨在比较韩国移民家庭和加拿大自闭症儿童家庭对家庭生活质量的认知和定义。对生活在加拿大不列颠哥伦比亚省的 13 名韩国移民家长和 12 名加拿大自闭症儿童家长进行了访谈。对于韩国移民家庭,确定了三个主题:家庭凝聚力、价值观和社会认可。对于加拿大家庭,家庭互动、支持、情感健康、个人特征以及与其他家庭的比较是定义其家庭生活质量的重要因素。研究结果强调了文化差异可能如何影响我们对家庭功能和生活质量的理解和评估。如果为这些工具的开发提供信息的研究缺乏跨文化视角,服务提供商和专业人员可能无法满足这些家庭的独特需求。