Perspectives on How to Implement Developmental Screening and Intervention for Children With Sickle Cell Disease

IF 1.5 4区医学 Q2 EDUCATION, SPECIAL

Journal of Early Intervention Pub Date : 2023-03-15 DOI:10.1177/10538151231159637

Catherine R. Hoyt, Jeni Erickson, Lingzi Luo, Taniya E. Varughese, Tara Han, A. Housten, A. King

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Abstract

Background: Children with sickle cell disease (SCD), a genetic blood disorder, are at increased risk of developmental delays but are not routinely referred to Early Intervention (EI). The study aimed to understand the need for and acceptability and feasibility of screening and providing EI services to children with SCD. Methods: Eleven EI partners and eight caregivers of children aged 3 to 5 years with SCD completed semi-structured interviews and short surveys. Results: Three main themes emerged from interviews and surveys: (a) awareness of disparities and moderate caregiver knowledge of child development, (b) high acceptability of screening for EI, and (c) the need for partner education to increase buy-in and feasibility of potential programming. Conclusion: Partners identified a clear need for EI screening and referral for children with SCD and indicated that a future program would be acceptable and feasible. However, education and incentives are needed to encourage providers to change current practice patterns.

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如何实施镰状细胞病儿童发育筛查和干预的观点

背景:镰状细胞病(SCD)是一种遗传性血液疾病，儿童发育迟缓的风险增加，但通常不进行早期干预(EI)。本研究旨在了解为SCD儿童筛查和提供情商服务的必要性、可接受性和可行性。方法:11名3 ~ 5岁SCD患儿的EI伙伴和8名照顾者完成半结构化访谈和简短问卷调查。结果:访谈和调查中出现了三个主要主题:(a)对差异的认识和照顾者对儿童发展的适度了解，(b)对EI筛查的高接受度，以及(c)对伙伴教育的需求，以增加潜在计划的购买和可行性。结论:合作伙伴明确需要对SCD儿童进行EI筛查和转诊，并指出未来的项目是可以接受和可行的。然而，需要教育和激励措施来鼓励提供者改变目前的实践模式。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Early Intervention Multiple-

CiteScore

3.30

自引率

7.10%

发文量

期刊介绍： The Journal of Early Intervention (JEI) publishes articles related to research and practice in early intervention for infants and young children with special needs and their families. Early intervention is defined broadly as procedures that facilitate the development of infants and young children who have special needs or who are at risk for developmental disabilities. The childhood years in which early intervention might occur begin at birth, or before birth for some prevention programs, and extend through the years in which children traditionally begin elementary school.