Department of Health, Exercise & Sports Sciences, University of New Mexico, Albuquerque, New Mexico, USA.
Department of Psychology, The University of Texas of the Permian Basin, Odessa, Texas, USA.
J Genet Couns. 2021 Apr;30(2):370-382. doi: 10.1002/jgc4.1320. Epub 2020 Sep 28.
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.
美国儿科学会、美国医学遗传学与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。尽管基因检测具有潜在的益处，但利用率却很低。我们提出了一个综合理论框架，以研究父母对其患有 ASD 的孩子进行基因检测的意愿及其相关的社会心理因素。该研究主要从互动自闭症网络（一个全国性的 ASD 儿童样本）招募了 411 名从未对其孩子进行过基因检测的 ASD 儿童的家长，他们完成了基于理论的在线调查。数据采用结构方程模型进行分析。大约一半的家长愿意为其患有 ASD 的孩子进行基因检测。结构方程模型的研究结果表明，我们的综合理论框架与调查数据之间具有良好的模型拟合度。父母对基因检测的态度、主观规范和对孩子进行检测的自我效能感与他们的检测意愿显著正相关。这项研究为了解父母对其患有 ASD 的孩子进行基因检测的意愿提供了初步的视角。我们的研究结果可以帮助医生和遗传咨询师理解、教育、咨询和支持父母对其患有 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证据的患者教育材料，以提高 ASD 儿童家长对基因检测的认识。
