Department of Pediatrics, Tufts Medical Center, Tufts University School of Medicine, Boston, MA.
Clinical and Translational Sciences Institute, Tufts University School of Medicine, Boston, MA.
J Dev Behav Pediatr. 2019 May;40(4):257-265. doi: 10.1097/DBP.0000000000000660.
Minority families experience disparities in the diagnosis and management of autism spectrum disorder (hereafter "autism"). To date, the experiences of Chinese immigrant families in the United States have not been explored. Utilizing parent and provider perspectives, this research sought to identify barriers and facilitators to the diagnosis and management of autism among Chinese immigrant children.
We conducted semistructured qualitative interviews with 16 parents of Chinese children diagnosed with autism and 16 providers who assist in the diagnosis and management of autism. Participant characteristics were analyzed utilizing descriptive statistics. Interviews were audiorecorded, transcribed, translated, and independently coded by 2 researchers until consensus was reached. Coded data were analyzed using a modified grounded therapy approach.
Parents and providers both identified cultural beliefs as an influence on the understanding and acceptance of autism as a diagnosis. There was a high degree of alignment in themes related to barriers to health care access and parent-provider communication. Recommendations to improve the system of care include (1) supporting communication, (2) cultural sensitivity, and (3) care coordination programming.
Findings reinforce that diagnosis and treatment of autism should take into account culturally specific beliefs about child developmental norms and should address systems-, provider-, and family-level barriers.
少数族裔家庭在自闭症谱系障碍（以下简称“自闭症”）的诊断和管理方面存在差异。迄今为止，尚未探讨美籍华裔移民家庭的相关经历。本研究利用家长和提供者的观点，旨在确定中国移民儿童自闭症诊断和管理中的障碍和促进因素。
我们对 16 名被诊断患有自闭症的中国儿童的家长和 16 名协助自闭症诊断和管理的提供者进行了半结构化定性访谈。利用描述性统计分析参与者的特征。采访内容被录音、转录、翻译，并由两名研究人员独立编码，直到达成共识。使用改进的扎根理论方法对编码数据进行分析。
家长和提供者都认为文化信仰会影响对自闭症诊断的理解和接受。在与医疗保健获取和家长-提供者沟通相关的障碍主题方面，存在高度一致性。改善护理系统的建议包括：（1）支持沟通；（2）文化敏感性；和（3）护理协调计划。
研究结果证实，自闭症的诊断和治疗应考虑到儿童发展规范方面特定于文化的信念，并应解决系统、提供者和家庭层面的障碍。
