Institute of Health and Neurodevelopment & School of Psychology, Aston University, Birmingham, United Kingdom.
Department of Nutrition and Dietetics, University Hospitals Coventry and Warwickshire NHS Trust, Coventry, United Kingdom.
PLoS One. 2024 Oct 16;19(10):e0309410. doi: 10.1371/journal.pone.0309410. eCollection 2024.
Many autistic children have feeding problems, typically eating a limited range of foods. Feeding problems affect quality of life, health, and development. Research suggests that parents are often unsure when to or whether to seek help. When they do, local provision of help across the UK is often lacking. A toolkit could offer a tailored, accessible, and scalable early intervention to support parents. We aim to develop the blueprint of a toolkit to help parents/caregivers manage feeding problems in their autistic children. Medical Research Council guidance on developing complex interventions informs three successive work packages: Realist review: a literature search and analysis using realist theory of logic to construct programme theory(s) in line with RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) guidance.Realist evaluation: interviews of three groups: autistic children, young people and adults (experts), parents/caregivers of autistic children (parents), and professionals who help parents manage feeding problems (professionals) across the UK. Analysis of verbatim interview transcripts using realist theory of logic to refine programme theory(s).Co-design of the toolkit blueprint: behaviour change theory applied to the programme theory(s) will generate candidate components for the online tool. A blueprint (a detailed textual outline) will be co-designed. A participatory research team of experts, parents, and professionals will be involved in each work package. Where consensus is needed it will be reached by asynchronous nominal group technique. A PPI (public and patient involvement) advisory group of experts and parents will ensure the project is relevant, respectful, and accessible. Findings of each step will be disseminated via journal publications, conferences, social media, as well as PPI-co-produced webinars and a dissemination event. On completion, this project will provide the foundation for the subsequent development and refinement of the prototype toolkit.
许多自闭症儿童存在进食问题,通常只吃有限的几种食物。进食问题会影响生活质量、健康和发育。研究表明,家长们通常不确定何时以及是否寻求帮助。当他们寻求帮助时,英国各地的当地援助往往不足。一个工具包可以为家长提供量身定制、易于获取且可扩展的早期干预措施,以支持他们。我们旨在开发一个工具包的蓝图,以帮助家长/照顾者管理自闭症儿童的进食问题。医学研究委员会关于开发复杂干预措施的指南指导着三个连续的工作包:
现实主义审查:使用现实主义理论逻辑进行文献检索和分析,根据 RAMESES(现实主义和元叙述证据综合:不断发展的标准)指南构建方案理论。
现实主义评估:对三组人员进行访谈:自闭症儿童、青少年和成年人(专家)、自闭症儿童的家长/照顾者(家长)以及帮助家长管理进食问题的专业人员(专业人员),访谈范围覆盖整个英国。使用现实主义理论逻辑对逐字记录的访谈记录进行分析,以完善方案理论。
工具包蓝图的共同设计:将行为改变理论应用于方案理论,将为在线工具生成候选组件。将共同设计蓝图(详细的文本大纲)。一个由专家、家长和专业人员组成的参与式研究团队将参与每个工作包。需要达成共识的地方,将通过异步名义群体技术达成共识。一个由专家和家长组成的 PPI(公众和患者参与)顾问小组将确保项目具有相关性、尊重性和可及性。每个步骤的发现都将通过期刊出版物、会议、社交媒体以及 PPI 共同制作的网络研讨会和传播活动进行传播。项目完成后,该项目将为随后开发和完善原型工具包提供基础。