护理人员和提供者对状细胞疾病儿童发展服务的观点:混合方法分析
Mollie Tamboli1, Erin MacArthur1, Natalie Collins1
1Departments of Psychology and Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, TN, United States.
Frontiers in pediatrics
|April 7, 2025
概括
患有状细胞疾病 (SCD) 的儿童面临发展服务的障碍. 提高护理人员的知识和提供者关系可以提高对SCD至关重要的早期干预计划的访问.
科学领域:
- 儿科血液学 儿科血液学
- 发育儿科 发育儿科
- 医疗保健服务研究 医疗服务研究
背景情况:
- 状细胞疾病 (SCD) 是一种遗传性血液疾病,通常与儿童的神经发育迟缓有关.
- 由于护理差异,许多患有SCD的儿童无法获得必要的发展服务.
- 了解影响服务获取的因素对于设计有效干预至关重要.
研究的目的:
- 确定影响SCD儿童获得发展服务的障碍和促进者的障碍.
- 为这个人群制定有针对性的干预措施提供信息.
主要方法:
- 采用了融合混合方法设计.
- 通过采访15名教育/医疗提供者和15名患有SCD的儿童 (4-6岁) 的照顾者,收集了定性数据.
- 定量数据包括关于儿童病史,抑郁症和早期发育知识的护理人员问卷.
主要成果:
- 影响访问的关键主题包括医疗/教育体验的质量,护理人员的知识/信仰和服务偏好.
- 虽然大多数护理人员报告没有障碍,但提供者发现了许多挑战.
- 一个积极的护理者-提供者关系是一个促进者;有限的社会关注SCD和护理者知识差距是障碍.
- 护理人员对SCD教育和社区支持表示兴趣.
结论:
- 混合方法分析揭示了SCD儿童发展服务的关键障碍和促进者.
- 解决护理人员的知识差距和培养强大的提供者关系对于改善服务获取至关重要.
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