Renty J, Roeyers H
Research Group Developmental Disorders, Department of Experimental Clinical and Health Psychology, Ghent University, Henri Dunantlaan, Ghent, Belgium.
Child Care Health Dev. 2006 May;32(3):371-85. doi: 10.1111/j.1365-2214.2006.00584.x.
The aim of the present study was to identify and describe factors associated with variations in the level of parental satisfaction with formal support and education for children with autism spectrum disorder (ASD) in Flanders.
Participants were recruited by a mailing from a diagnostic centre for pre-schoolers and by advertisements dispersed in the Flemish parent organization for ASD and in services and special schools. The sample consisted of 244 parents of children with ASD (age range: 2.69-17.81 years, male/female sex ratio 4:1). The data were collected using a questionnaire on experiences with education and support, which was compiled for the purpose of this study. The data resulting from the questionnaire were supplemented with information obtained from semi-structured in-depth interviews with a stratified sample of 15 parents.
The study revealed that parents experienced difficulties with the diagnostic process, with support and education provided by mainstream settings and with the accessibility of autism-specific service provisions. Conversely, parents reported to be satisfied with the quality of autism-specific support and education. Predictors of overall satisfaction were parental involvement in formal support, knowledge of available service provisions and time between first consultation and final diagnosis. Practical implications of the results are discussed.
本研究的目的是识别和描述与佛兰德地区自闭症谱系障碍（ASD）儿童家长对正规支持和教育的满意度水平差异相关的因素。
通过向一家学龄前儿童诊断中心邮寄信件，以及在佛兰德地区自闭症家长组织、服务机构和特殊学校散发广告的方式招募参与者。样本包括244名ASD儿童的家长（年龄范围：2.69 - 17.81岁，男女比例为4:1）。使用一份为本研究编制的关于教育和支持体验的问卷收集数据。问卷所得数据通过对15名家长组成的分层样本进行半结构化深度访谈获得的信息加以补充。
研究表明，家长在诊断过程、主流机构提供的支持和教育以及自闭症专项服务的可及性方面遇到困难。相反地，家长对自闭症专项支持和教育的质量表示满意。总体满意度的预测因素包括家长对正规支持的参与度、对现有服务的了解程度以及首次咨询与最终诊断之间的时间。讨论了研究结果的实际意义。
