Sakyi Georgina J, Mire Sarah S, Goin-Kochel Robin P, Murali Chaya N, Day Susan X
Department of Psychological, Health, and Learning Sciences, University of Houston, Houston, TX, USA.
Department of Educational Psychology, Baylor University, Waco, TX, USA.
Int J Dev Disabil. 2023 Apr 10;71(1):61-71. doi: 10.1080/20473869.2023.2197310. eCollection 2025.
Though genetic testing is recommended for children diagnosed with autism spectrum disorder (ASD), both internal (e.g. parents' and providers' valuation of genetic testing) and external (e.g. insurance coverage) barriers exist, and exploration of these factors is required to close the gap between provider recommendations and parent follow-through. In a sample of 290 parents, we explored (a) how parents' ASD-related etiological beliefs and symptom attributions, as well as income, affected genetic testing completion; and (b) whether these factors influence parents' hopes or concerns about genetic testing. Principal component analysis (PCA) was used to investigate the factor structure of the ASD attribution measure used, which revealed a different factor structure from previous studies. Binomial logistic regression analyses indicated that parents were less likely to complete genetic testing when they believed their children's ASD was caused by personal attributes (e.g. their own stress, behaviors, attitudes, etc.). Parents' hopefulness about the utility of genetic testing increased when they observed more ASD symptoms. Results support the importance of understanding how parents' perceptions about ASD influence receptivity to and follow-through on genetic testing recommended by providers. Such information may enhance researchers' knowledge of parental decision-making regarding genetic testing and improve clinical care for ASD-affected families.
尽管对于被诊断为自闭症谱系障碍（ASD）的儿童建议进行基因检测，但存在内部（例如父母和医疗服务提供者对基因检测的重视程度）和外部（例如保险覆盖范围）障碍，需要对这些因素进行探究，以缩小医疗服务提供者的建议与家长后续行动之间的差距。在290名家长的样本中，我们探究了：（a）家长与ASD相关的病因信念和症状归因以及收入如何影响基因检测的完成情况；以及（b）这些因素是否会影响家长对基因检测的期望或担忧。主成分分析（PCA）用于研究所使用的ASD归因测量的因素结构，结果显示其与先前研究的因素结构不同。二项逻辑回归分析表明，当家长认为孩子的ASD是由个人属性（例如自身压力、行为、态度等）导致时，他们完成基因检测的可能性较低。当家长观察到更多ASD症状时，他们对基因检测效用的期望会增加。研究结果支持了理解家长对ASD的认知如何影响其对医疗服务提供者推荐的基因检测的接受度和后续行动的重要性。此类信息可能会增强研究人员对家长基因检测决策的了解，并改善对受ASD影响家庭的临床护理。
