对自闭症儿童父母和照护者关于健康、学校和社区支持网络认知的定性研究的系统综述。
完整摘要 · 中文译文
背景：自闭症谱系障碍（ASD）儿童的家庭成员和照护者报告在获取支持网络方面面临挑战和障碍，这些与对临床、社会和生活质量结局的不良影响相关。目的：探讨ASD儿童的父母和照护者如何体验卫生和教育服务及社区提供的支持网络。方法：这是一项关于ASD儿童父母和照护者卫生、学校和社区支持网络的定性研究的系统综述，采用研究的主题综合法。我们在PubMed、EMBASE、ERIC和APA PsychNet数据库中检索了定性研究（访谈、焦点小组和含开放性问题的问卷）的相关术语，并基于所选定性研究按编码和主题进行主题综合。结果：综合后共纳入24篇选定文章。出现三个主题：卫生支持网络（寻求诊断、情感支持、诊断后、经济和家庭影响、获得专科服务）；学校支持网络（融合学校、培训、情感支持）；社区支持网络（污名和社会排斥、评判以及情感支持）。ASD儿童的父母和照护者在与各种支持网络的历程中感知到困难。结论：父母获得的情感支持有限是卫生、学校和社区网络中普遍存在的感受。社会经济、人口学、民族和文化特征似乎影响 以不同方式影响对支持网络的感知。
完整摘要 · 英文原文
Background: Family members and caregivers of children with autism spectrum disorder (ASD) report challenges and barriers in accessing support networks, which are associated with detrimental impacts on clinical, social, and quality-of-life outcomes.Objective: To explore how parents and caregivers of children with ASD, experience the support network provided by health and education services and the community.Method: This is a systematic review of the qualitative research about health, school and community support networks for parents and caregivers of children with ASD using a thematic synthesis of the studies. We searched the terms in the PubMed, EMBASE, ERIC and APA PsychNet databases for qualitative studies (interviews, focus groups and questionnaires with open questions) and produced a thematic synthesis by codes and themes based on the selected qualitative studies.Results: The synthesis resulted in 24 selected articles. Three themes emerged: health support networks (search for diagnosis, emotional support, post-diagnosis, financial and family impacts, access to specialized services); school support networks (inclusive school, training, emotional support); and community support networks (stigma and social exclusion, judgments, and emotional support). Parents and caregivers of children with ASD perceive difficulties in their trajectories with the various support networks.Conclusions: The limited emotional support received by parents was a common perception in health, school and community networks. Socioeconomic, demographic, ethnic and cultural characteristics seem to influence differently the perceptions on support networks.