Wang Fang, Lao U-Chong, Xing Yi-Pei, Zhou Ping, Deng Wen-Lin, Wang Yu, Ji Yue, Chen Miao-Ying, Li Hai, Zou Xiao-Bing
Child Development and Behavior Center, The Third Affiliated Hospital, Sun Yat-Sen University, Guangzhou, China.
Rehabilitation Medicine Department, Shenzhen Hospital, Southern Medical University, Shenzhen, China.
Transl Pediatr. 2022 Sep;11(9):1445-1457. doi: 10.21037/tp-22-113.
In recent years, parent-mediated intervention for children with autism spectrum disorder (ASD) has increased. Therefore, implementing effective parent training programs for parents of children with autism is of paramount importance, particularly in low- and middle-income countries. However, little is known about the status of and gaps in parents' knowledge on ASD, which may hinder the development of valid parental training programs. Herein, we aimed at exploring the status of Chinese parents' knowledge, attitude and behavior toward ASD, and potential factors affecting the acquisition of correct knowledge.
This study used a self-designed parental knowledge questionnaire of autism (PKQA) comprising 20 questions alongside another questionnaire comprising additional 17 questions covering the aspects of family demographics, attitudes, and behaviors of parents. In total, we included 394 parents who visited the outpatient department of the Child's Development and Behavior Center of the Third Affiliated Hospital of Sun Yat-Sen University between December 2018 and May 2019, with their children meeting the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for ASD.
The median knowledge score in the PKQA was 15 [interquartile range (IQR), 13-17]. Advanced paternal age and longer time interval from diagnosis to enrolling into the parent training program were associated with a lower total knowledge score (all P<0.001). Higher maternal education attainment, higher family income, child being currently under intervention, and family members sharing a common perception of the diagnosis were associated with a higher total knowledge score (all P<0.01). Reading autism-related books (P<0.001) or attending professional lectures (P=0.019) were also associated with a higher total knowledge score.
Taken together, this study revealed that family demographics and parents' attitudes and behaviors toward ASD may significantly influence their knowledge about autism, suggesting the need for promoting more targeted parental skills training programs.
近年来，针对自闭症谱系障碍（ASD）儿童的家长介导干预有所增加。因此，为自闭症儿童的家长实施有效的家长培训项目至关重要，尤其是在低收入和中等收入国家。然而，对于家长关于ASD的知识现状及差距了解甚少，这可能会阻碍有效的家长培训项目的开展。在此，我们旨在探讨中国家长对ASD的知识、态度和行为状况，以及影响正确知识获取的潜在因素。
本研究使用了自行设计的自闭症家长知识问卷（PKQA），其中包含20个问题，以及另一份包含17个问题的问卷，涵盖家庭人口统计学、家长态度和行为等方面。我们总共纳入了394名家长，他们于2018年12月至2019年5月期间前往中山大学附属第三医院儿童发育与行为中心门诊就诊，其孩子符合《精神疾病诊断与统计手册》第五版（DSM-5）的ASD诊断标准。
PKQA中的知识得分中位数为15[四分位间距（IQR），13 - 17]。父亲年龄较大以及从诊断到参加家长培训项目的时间间隔较长与总知识得分较低相关（所有P<0.001）。母亲教育程度较高、家庭收入较高、孩子目前正在接受干预以及家庭成员对诊断有共同认知与总知识得分较高相关（所有P<0.01）。阅读自闭症相关书籍（P<0.001）或参加专业讲座（P = 0.019）也与总知识得分较高相关。
综上所述，本研究表明家庭人口统计学以及家长对ASD的态度和行为可能会显著影响他们对自闭症的知识，这表明需要推广更具针对性的家长技能培训项目。
