Meng Xiao, Yeh Ssu-Yu, Zhang Zihan, Huang Tse-Yang, Chen Lei-Shih
Department of Health Behavior, Texas A&M University, College Station, TX, 77843-4243, USA.
Department of Special Education, National Tsing Hua University, Hsinchu, Taiwan.
J Community Genet. 2025 Apr 29. doi: 10.1007/s12687-025-00795-2.
As there was a gap in research focused on the autism spectrum disorder (ASD) genetic testing educational needs of Taiwanese parents of children with ASD, our objective was to explore their ASD genetic testing-related educational needs and preferences. Semi-structured interviews were conducted with 39 Taiwanese parents of children with ASD. All interview data were analyzed to identify emergent themes using content analysis. The study included 31 mothers and 8 fathers with a mean age of 42. Most interviewees were married (92.3%) and held a college degree or higher (61.5%). Most interviewees reported positive attitudes toward ASD genetic testing education and identified preferred educational topics that included: (1) ASD genetic testing cost, procedures, accuracy, reliability, benefits, risks, and scientific basis, (2) genetic testing report interpretation, and (3) the experiences of other parents whose children have undergone ASD genetic testing. Parents reported that their most preferred education methods were in-person lectures and seminars, printed health education materials, and web-based education and that they preferred receiving education from reliable sources including healthcare providers, ASD organizations, and schools. Taiwanese parents of children with ASD in this study expressed interest in ASD genetic testing education. They preferred a variety of topics and delivery methods and welcomed education from diverse sources. These findings provide significant implications for the development of evidence-based ASD genetic testing focused health education programs and materials tailored to the needs of parents of children with ASD in Taiwan.
由于专注于台湾自闭症谱系障碍（ASD）儿童家长的ASD基因检测教育需求的研究存在空白，我们的目标是探索他们与ASD基因检测相关的教育需求和偏好。我们对39位台湾ASD儿童的家长进行了半结构化访谈。使用内容分析法对所有访谈数据进行分析，以确定出现的主题。该研究包括31位母亲和8位父亲，平均年龄为42岁。大多数受访者已婚（92.3%），拥有大学学位或更高学历（61.5%）。大多数受访者对ASD基因检测教育持积极态度，并确定了他们偏好的教育主题，包括：（1）ASD基因检测的成本、程序、准确性、可靠性、益处、风险和科学依据，（2）基因检测报告解读，以及（3）其他孩子接受过ASD基因检测的家长的经验。家长们表示，他们最喜欢的教育方式是面对面讲座和研讨会、印刷的健康教育材料以及网络教育，并且他们更愿意从包括医疗保健提供者、ASD组织和学校在内的可靠来源接受教育。本研究中的台湾ASD儿童家长对ASD基因检测教育表现出兴趣。他们偏好各种主题和授课方式，并欢迎来自不同来源的教育。这些发现为制定基于证据的、针对台湾ASD儿童家长需求的ASD基因检测重点健康教育项目和材料具有重要意义。
