Early-life predictors of primary school learning outcomes in children with complex special educational needs: A prospective longitudinal study of tube

具有复杂特殊教育需求的儿童小学学习成果的早期预测因素：管的前瞻性纵向研究

• 批准号: 2887024
• 金额: --
• 依托单位: King's College London
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2887024
• 关键词: Early; life; predictors; primary; learning

Tuberous sclerosis complex (TSC) is a complex rare genetic condition characterised by a range of physical and behavioural difficulties, which require specialist multidisciplinary support. While many children with TSC can attend school and participate in activities with some assistance, the manifestations of TSC will affect each child differently. It is challenging to predict how each child will develop and therefore how best to support them at school. This PhD will further our understanding of educational experiences and outcomes of children with TSC in primary school by working with a longitudinal cohort of TSC, theEarly Development in Tuberous Sclerosis (EDiTS) Study, and the Tuberous Sclerosis Association (TSA), the UK charity for families affected by TSC. The student will firstcharacterise associations between cognitive function, school readiness and neurodevelopmental conditions in the preschool years using existing data from the EDiTS Study, which has been following children with TSC from birth. Secondly, multiple measures including standardised questionnaires, interviews, focus groups and online experiments will be used to describe and measure educational outcomes, learning profiles and specialist provision in primary school for TSC. Thirdly, early-life predictors of learning outcomes in TSC will be identified using longitudinal data. During an internship with the TSA, the student will be supported to deliver accredited training modules to educational professionals and in providing support to families. Accessible summaries of findings will be co-produced with members of the TSC community and disseminated through a dedicated education event. Knowledge gained will extend to other populations ofchildren with complex special educational needs and disabilities, ensuring broader impact. Evidence-based research is needed to inform intervention and educational practices to provide the right educational opportunities for children with complex neurogenetic conditions, in order to improve longer term outcomes and quality of life.

结节性硬化症复合物（TSC）是一种复杂的稀有遗传状况，其特征是一系列物理和行为困难，需要专业的多学科支持。尽管许多有TSC的孩子可以上学并在一些帮助的情况下参加活动，但TSC的表现将对每个孩子的影响都不同。预测每个孩子的成长以及如何最好地在学校支持他们是一项挑战。该博士学位将通过与TSC的纵向同类，结节性硬化症研究（Edits）研究（Edits）研究以及结核菌硬化症协会（TSA）合作，进一步了解小学中TSC儿童的教育经历和成果。该学生将使用现有的数据研究中的现有数据在学龄前几年中首先将认知功能，学校准备和神经发育条件之间的关联进行关联，该研究一直以来是从出生开始的TSC儿童。其次，将使用包括标准化问卷，访谈，焦点小组和在线实验在内的多项措施来描述和衡量TSC小学中的教育成果，学习资料和专家规定。第三，将使用纵向数据确定TSC中学习成果的早期生活预测指标。在与TSA实习期间，将支持学生为教育专业人员提供认可的培训模块，并为家庭提供支持。可访问的调查结果摘要将与TSC社区的成员共同制作，并通过专门的教育活动进行传播。获得的知识将扩展到具有复杂的特殊教育需求和残疾的其他人群，从而确保更广泛的影响。需要基于证据的研究来为干预和教育实践提供指导，以为具有复杂神经遗传条件的儿童提供正确的教育机会，以改善长期的结果和生活质量。