Xu Lei, Richman Alice R, Mitchell Linda C, Luo Huabin, Jiang Yong-Hui, Roy Sara, Floyd Augustus E
Am J Health Behav. 2018 Jan 7;42(4):3-12. doi: 10.5993/AJHB.42.4.1.
Objectives New genomic tests for Autism Spectrum Disorders (ASD) are being offered to children and families with ASD; however, these tests are underutilized by parents of children affected with ASD. Methods We designed, implemented and pilot-tested an educational intervention to enhance parental genetic knowledge and assist them to make informed decisions about genomic testing. We utilized a pre-/post-test design to evaluate genetic knowledge and test perceptions in a sample of parents of children with ASD. Results Fifty-three parents participated in our online training (5 modules) and completed pre- and post-assessments. Our surveys queried knowledge, attitudes, and intention to test. The knowledge section contained questions regarding autism, genes, and genetic testing for autism. The other 2 sections included attitudinal questions about testing as well as parents' behavioral intention to seek genetic testing for autism. Conclusions Our results indicate that knowledge significantly improved following the intervention (p < .001). Although attitude and intention scores changed from pre-to post-assessment, these changes were not statistically significant. Our results demonstrate that this first-of-its-kind educational program designed for parents of children with ASD was effective at increasing parents' knowledge related to genomic testing for autism.
目标 针对自闭症谱系障碍（ASD）的新型基因检测已提供给患有ASD的儿童及其家庭；然而，这些检测在受ASD影响儿童的父母中未得到充分利用。方法 我们设计、实施并进行了一项教育干预措施，以增强父母的基因知识，并协助他们就基因检测做出明智的决策。我们采用前测/后测设计，对一组ASD儿童的父母样本的基因知识和检测认知进行评估。结果 53位家长参加了我们的在线培训（5个模块），并完成了前后评估。我们的调查询问了知识、态度和检测意愿。知识部分包含有关自闭症、基因以及自闭症基因检测的问题。另外两部分包括关于检测的态度问题以及家长为自闭症寻求基因检测的行为意愿。结论 我们的结果表明，干预后知识水平有显著提高（p < .001）。虽然从评估前到评估后态度和意愿得分有所变化，但这些变化没有统计学意义。我们的结果表明，这个为ASD儿童家长设计的首创教育项目在增加家长与自闭症基因检测相关的知识方面是有效的。
