Department of Education Studies, University of Warwick, Coventry, UK.
Department of Psychology and Human Development, UCL Institute of Education, University College London, London, UK.
Res Dev Disabil. 2022 Oct;129:104321. doi: 10.1016/j.ridd.2022.104321. Epub 2022 Aug 2.
Portraying the voices of children with complex genetic neurodevelopmental disorders about their health, care and education needs in their statutory documents is a challenging task. This study examined the ways by which the perspectives of children diagnosed with Down Syndrome (DS) and Williams Syndrome (WS) are portrayed in their statutory documents, namely the Education Health and Care plans, in England. Using the International Classification of Functioning Disability and Health for Children and Youth, we analysed the content of Section A of the Education Health and Care plans of 52 children and young people with WS and DS, between 5 and 26 years of age. A minority of statutory documents (7.7 %) explicitly reported the children's voices, and many failed to document how the children's voices were accessed. Only a few specific or evidence-based tools to access their voices were reported. Most statutory documents portrayed parental rather than children's voices concerning aspects of their health, care, and education. This study highlights the need to establish the use of evidence-based tools for ascertaining the voices of children with complex neurodevelopmental disorders and including them in decision making about their health, care and education needs.
在法定文件中描绘患有复杂遗传性神经发育障碍的儿童的声音，以反映他们的健康、护理和教育需求，是一项具有挑战性的任务。本研究考察了在英格兰，通过哪些方式在法定文件中（即教育、健康和关怀计划）描绘了被诊断患有唐氏综合征 (DS) 和威廉姆斯综合征 (WS) 的儿童的观点。我们使用《儿童和青少年功能、残疾和健康国际分类》分析了 52 名 5 至 26 岁的 WS 和 DS 儿童和青少年的教育、健康和关怀计划 A 部分的内容。少数法定文件（7.7%）明确报告了儿童的声音，但许多文件没有记录如何获取儿童的声音。仅报告了少数用于获取其声音的特定或基于证据的工具。大多数法定文件在涉及儿童健康、护理和教育的方面描绘了父母的声音，而非儿童的声音。本研究强调需要建立使用基于证据的工具来确定患有复杂神经发育障碍的儿童的声音，并将其纳入有关他们健康、护理和教育需求的决策过程中。
