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Pursuing genetic testing for children with autism spectrum disorders: What do parents think?
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-09-28 , DOI: 10.1002/jgc4.1320
Shixi Zhao 1 , Wei-Ju Chen 2 , Shweta U Dhar 3 , Tanya N Eble 3 , Oi-Man Kwok 4 , Lei-Shih Chen 5
Affiliation  

The American Academy of Pediatrics, the American College of Medical Genetics and Genomics, and the American Academy of Neurology recommend genetic testing, as a genetic evaluation tool, for children diagnosed with autism spectrum disorders (ASD). Despite the potential benefits, the utilization of genetic testing is low. We proposed an integrated theoretical framework to examine parents’ intention and associated psychosocial factors in pursuing genetic testing for their children with ASD. Recruiting primarily from the Interactive Autism Network, a nationwide sample of 411 parents of children with ASD who had never pursued genetic testing for their children completed our theory‐based online survey. Data were analyzed using structural equation modeling. About half of the parents were willing to pursue genetic testing for their children with ASD. Findings of the structural equation modeling suggested a good model fit between our integrated theoretical framework and survey data. Parents’ intention was significantly and positively associated with their attitudes toward genetic testing, subjective norm, and self‐efficacy in having their children tested. This study serves as an initial window to understand parental intention to pursue genetic testing for their children with ASD. Our findings can help physicians and genetic counselors understand, educate, counsel, and support parents’ decision‐making about having their children with ASD genetically tested. Furthermore, our study can also assist physicians and genetic counselors in developing theory‐ and evidence‐based patient education materials to enhance genetic testing knowledge among parents of children with ASD.

中文翻译:

对自闭症谱系障碍儿童进行基因检测:父母怎么看?

美国儿科学会、美国医学遗传学和基因组学学院和美国神经病学学会建议将基因检测作为一种遗传评估工具,用于诊断患有自闭症谱系障碍 (ASD) 的儿童。尽管有潜在的好处,但基因检测的利用率很低。我们提出了一个综合的理论框架来检查父母对 ASD 儿童进行基因检测的意图和相关的社会心理因素。主要从互动自闭症网络招募,全国范围内的 411 名 ASD 儿童父母样本完成了我们基于理论的在线调查,他们从未对他们的孩子进行过基因检测。使用结构方程模型分析数据。大约一半的父母愿意为患有 ASD 的孩子进行基因检测。结构方程建模的结果表明我们的综合理论框架和调查数据之间存在良好的模型拟合。父母的意愿与他们对基因检测的态度、主观规范和让孩子接受检测的自我效能感显着正相关。这项研究是了解父母对 ASD 儿童进行基因检测的意图的初始窗口。我们的研究结果可以帮助医生和遗传咨询师了解、教育、咨询和支持父母关于让患有 ASD 的孩子进行基因检测的决策。此外,我们的研究还可以帮助医生和遗传咨询师开发基于理论和循证的患者教育材料,以提高 ASD 儿童父母的基因检测知识。
更新日期:2020-09-28
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