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促进镰状细胞病患儿教育及学业成果方面的公平性。

Fostering equity in education and academic outcomes in children with sickle cell disease.

作者信息

Miller Meghan, Landsman Rachel, Scott J Paul, Heffelfinger Amy K

机构信息

Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI.

Children's Wisconsin, Milwaukee, WI, USA.

出版信息

Clin Neuropsychol. 2022 Feb;36(2):245-263. doi: 10.1080/13854046.2021.1945147. Epub 2021 Jul 5.

Abstract

Children with Sickle Cell Disease (SCD), who are predominantly Black, face academic disparities in part because of the impact of longstanding racially biased education systems. Adverse systemic factors in addition to neurologic complications put children with SCD at risk for poor academic outcomes. Providing caregivers with information on how to select quality schools and advocate for their child's specific educational needs may influence academic outcomes and reduce educational disparities. We aimed to provide information to caregivers of children with SCD on school selection/quality, enrollment, and special education options.Forty-six caregivers of children with SCD between the ages of 2 and 5:11 years participated in a structured informational session. Caregivers' sense of empowerment regarding educational options for their child was assessed via survey before and after the structured informational session.Caregivers reported feeling more informed and empowered following their participation in an informational session on school selection/quality, enrollment, and special education options for their child than before the informational session.It is essential that families of children with SCD have the knowledge, skills, and sense of empowerment to access quality schools beginning in early childhood. Future research will determine if this intervention will improve children's access to academic support and academic outcomes. We theorize improvements in academic outcomes along with addressing systemic disparities may ultimately create a positive impact on vocational and quality of life outcomes in the lives of children with SCD.

摘要

镰状细胞病(SCD)患儿主要为黑人,他们面临学业差距,部分原因是长期存在的种族偏见教育系统的影响。除神经并发症外,不利的系统性因素也使SCD患儿面临学业成绩不佳的风险。向照顾者提供有关如何选择优质学校以及如何为孩子的特定教育需求进行倡导的信息,可能会影响学业成绩并减少教育差距。我们旨在向SCD患儿的照顾者提供有关学校选择/质量、入学和特殊教育选项的信息。46名年龄在2岁至5岁11个月之间的SCD患儿的照顾者参加了一次结构化信息会议。在结构化信息会议前后,通过调查评估照顾者对孩子教育选择的赋权感。照顾者报告称,与参加信息会议之前相比,他们在参加了关于孩子学校选择/质量、入学和特殊教育选项的信息会议后,感觉自己了解的信息更多,也更有能力。SCD患儿的家庭必须具备知识、技能和赋权感,以便从幼儿期开始就能进入优质学校。未来的研究将确定这种干预措施是否会改善孩子获得学业支持的机会和学业成绩。我们推测,学业成绩的提高以及系统性差距的解决最终可能会对SCD患儿的职业和生活质量产生积极影响。

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