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支持性染色体非整倍体学生在教育环境中的发展:全国性调查的结果。

Supporting students with sex chromosome aneuploidies in educational settings: Results of a nationwide survey.

机构信息

Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA; eXtraordinarY Kids Program, Children's Hospital Colorado, Aurora, CO, USA.

Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, USA; eXtraordinarY Kids Program, Children's Hospital Colorado, Aurora, CO, USA.

出版信息

J Sch Psychol. 2022 Aug;93:28-40. doi: 10.1016/j.jsp.2022.06.002. Epub 2022 Jun 28.

Abstract

Children with sex chromosome aneuploidies (SCAs) are at an increased risk for neurocognitive and behavioral disorders that may interfere with academic success, including early developmental delays, learning disabilities, executive function problems, and social communication deficits. The present national survey aimed to update and extend our understanding of school supports and educational outcomes for students with these increasingly common genetic diagnoses. Parents of children with a diagnosed SCA, birth to 21 years, living in the United States (N = 248), responded to an electronic survey with questions focused on school support plans, academic accommodations, educational therapies, school completion, and perceptions of educator awareness of SCAs. Results revealed high rates of delayed kindergarten, grade retention in primary years, and educational support plans (IEPs = 71%; Section 504 Plans = 26%). A majority (73%) of respondents with children over age 18 years (N = 41) reported their children successfully completed high school, and nearly half (46%) pursued post-secondary education opportunities. Many parents reported their children's educators had little to no knowledge of SCA conditions, justifying a need to train teachers and policy makers in the unique educational needs of children and adolescents with SCAs. School psychologists should be aware of the frequent need for accommodations and individualized support plans in this population so they can support children and families by advocating for early and comprehensive evaluations and intervention plans.

摘要

患有性染色体非整倍体疾病(SCA)的儿童患神经认知和行为障碍的风险增加,这些障碍可能会干扰学业成功,包括早期发育迟缓、学习障碍、执行功能问题和社交沟通缺陷。本全国性调查旨在更新和扩展我们对这些日益常见的遗传诊断患者的学校支持和教育成果的理解。在美国,患有确诊 SCA 的 0-21 岁儿童的父母(N=248)对一项电子调查做出了回应,该调查的问题集中在学校支持计划、学术适应、教育治疗、学校毕业以及对教育者对 SCA 认识的看法。结果显示,幼儿园延迟、小学留级和教育支持计划(IEP=71%;第 504 计划=26%)的发生率很高。超过 18 岁的受访者(N=41)中,大多数人报告说他们的孩子成功完成了高中,近一半(46%)的人接受了高等教育机会。许多家长表示,他们孩子的教育者对 SCA 状况几乎一无所知,这证明需要培训教师和政策制定者了解 SCA 儿童和青少年的特殊教育需求。学校心理学家应该意识到在这一人群中经常需要适应和个性化支持计划,以便通过倡导早期和全面的评估和干预计划来支持儿童和家庭。

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