孤独症谱系障碍儿童家庭喘息服务的研究进展

doi:10.12114/j.issn.1007-9572.2020.00.393

摘要/Abstract

摘要： 孤独症谱系障碍（ASD）是一种较为严重的神经系统发育障碍性疾病，以社会互动缺陷、语言交流障碍、兴趣限制或重复刻板行为为主要表现，但目前该病尚不能根治，只能通过康复而改善症状。ASD儿童的主要照顾者是家长，长期繁重的照护压力严重影响照顾者的生活质量，为此国外提出了喘息服务的概念，以缓解照顾者照顾压力。本文结合喘息服务的模式及内容、ASD儿童家庭接受喘息服务的影响因素、喘息服务效果评价指标等分析了国外ASD儿童家庭喘息服务研究现状，强调ASD儿童家庭喘息服务应以家庭需求为导向，考虑家庭结构，融合家庭康复，提供个性化服务项目；同时分析了我国ASD儿童家庭机构性喘息服务现状，提出应以社会支持理论为依据，完善喘息服务政策及信息支持，加强喘息服务提供者队伍建设，通过多学科融合为ASD儿童提供涵盖教育、康复训练的综合性喘息服务，提高喘息服务质量。

关键词: 孤独症谱系障碍, 喘息服务, 家庭医疗保健服务, 综述

Abstract: Autism spectrum disorder（ASD）is a serious neurodevelopmental disorder mainly characterized by impaired social interactions，communication disorders，limited interests or repetitive and stereotyped behavior，which can only be alleviated by rehabilitation but not be cured at present.As the primary caregivers for children with ASD，the parents bear a heavy burden induced by long-term care，which decreases their quality of life.Therefore，respite care was put forward abroad to alleviate the caregivers' burden.This paper focuses on the status of family-based respite care for children with ASD abroad，including care pattern，contents，acceptance and acceptance-related factors，as well as effectiveness evaluation indicators of respite care，emphasizing that respite care should be family needs-oriented and personalized，with consideration of family structure in combination with family-based rehabilitation.Besides，this paper also analyzes the current situation of institutional respite care for children with ASD in China，and proposes that the policy and information support of respite care should be improved based on social support theory，and the construction of care team should be strengthened to provide comprehensive multidisciplinary respite care including education and rehabilitation training，and to improve the care quality.

Key words: Autism spectrum disorder, Respite care, Home care services, Review

吴韬,夏浩志. 孤独症谱系障碍儿童家庭喘息服务的研究进展[J]. 中国全科医学, 2020, 23(24): 2991-2999. DOI: 10.12114/j.issn.1007-9572.2020.00.393.
WU Tao,XIA Haozhi. Advances in respite care for autism spectrum disorder in children[J]. Chinese General Practice, 2020, 23(24): 2991-2999. DOI: 10.12114/j.issn.1007-9572.2020.00.393.

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