父母对儿童神经病学中以家庭为中心的护理的观点:一个解释性的顺序混合方法研究
Ege Sarikaya1, Courtney B Cook1, Kathryn A Selby2,3
1Department of Medical Genetics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Developmental medicine and child neurology
|April 1, 2025
概括
父母希望在儿童神经病治疗方面获得更好的信息和伙伴关系. 改善以家庭为中心的护理 (FCC) 增强了神经疾病儿童的沟通和支持.
科学领域:
- 儿科神经学 儿科神经学
- 医疗保健提供 医疗保健提供
- 以家庭为中心的护理
背景情况:
- 在儿科环境中,以家庭为中心的护理 (FCC) 是至关重要的.
- 了解家长在儿科神经病学方面的经验对于提高护理质量至关重要.
研究的目的:
- 探索父母在儿童神经病诊所的家庭中心护理 (FCC) 的经验.
- 确定FCC交付中需要改进的领域.
主要方法:
- 混合方法研究结合了调查 (MPOC-20,PedsQL) 和半结构面试.
- 量化分析探讨了护理经验,生活质量和人口统计数据之间的关联.
- 定性分析使用解释性描述来深入了解父母的经历.
主要成果:
- 父母对尊重护理的满意度最高,对一般信息提供的满意度最低.
- 孩子的年龄,婚姻状况,居住和服务使用预测了更低的满意度和生活质量得分.
- 开发了一个概念框架,强调父母在孩子的医疗保健过程中的中心作用.
结论:
- 显然需要加强FCC,特别是提供一般和特定信息.
- 培养父母和医疗保健提供者之间更强大的伙伴关系至关重要.
- 将遗传咨询师纳入护理团队可以改善信息共享,决策和支持.
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