ABSTRACT

Objective

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.

Methods

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.

Results

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.

Conclusions

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

客观的

以黑人为主的镰状细胞病 (SCD) 儿童面临学业差异，部分原因是长期存在种族偏见的教育系统的影响。除神经系统并发症外，不良全身因素使 SCD 儿童面临学习成绩不佳的风险。向看护人提供有关如何选择优质学校和倡导孩子特定教育需求的信息可能会影响学业成绩并减少教育差距。我们旨在为 SCD 儿童的看护者提供有关学校选择/质量、入学率和特殊教育选择的信息。

方法

46 名 2 至 5 时 11 岁的 SCD 儿童看护人参加了结构化的信息交流会。在结构化信息会议之前和之后，通过调查评估了看护人对其孩子教育选择的授权感。

结果

看护人报告说，在参加关于学校选择/质量、入学和孩子特殊教育选择的信息会议后，他们比信息会议前感到更加知情和更有能力。

结论

SCD 儿童的家庭必须具备从幼儿时期开始就读优质学校的知识、技能和授权意识。未来的研究将确定这种干预是否会改善儿童获得学业支持和学业成果的机会。我们认为，学术成果的改善以及解决系统性差异最终可能对 SCD 儿童生活中的职业和生活质量产生积极影响。