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家庭参与系统层面的儿童和青少年特殊医疗保健研究需要全面审查

Karen Kuhlthau¹, Stefanie G Ames², Allysa Ware³

¹Department of Pediatrics, Mass General Brigham, 125 Nashua St, 8(th) floor, Boston MA 02114, United States.

Academic pediatrics

|March 11, 2026

概括

家庭参与对有特殊需求的儿童的医疗保健研究是多样化的,很少被衡量. 未来的研究需要标准化的参与报告和测量工具,以获得更好的结果.

科学领域:

医疗保健系统研究医疗保健系统研究
以家庭为中心的护理
证据综合证据综合

背景情况:

家庭参与对于加强对有特殊医疗需求的儿童和青少年 (CYSHCN) 的医疗保健系统至关重要.
家庭参与的不断发展的科学需要更清楚地了解当前的研究,以改善实施.
本范围审查综合了关于家庭参与CYSHCN系统级研究的文献.

研究的目的:

总结关于家庭参与CYSHCN.家庭系统级研究的文献.
在此背景下分析家庭参与的定义和描述.
检查参与度的测量及其与结果的相关性.

主要方法:

遵守JBI证据综合手册和PRISMA-ScR指南.
在主要数据库 (MEDLINE,Embase,Web of Science,Cochrane CENTRAL) 和临床试验网站 (ClinicalTrials.gov.gov) 中进行全面的文献搜索.
选摘要和全文文章,然后提取有关家庭参与的数据.

主要成果:

在超过2,123篇独特文章中,有50篇文章符合纳入标准,在2020年之后的出版物显著增加.
家庭成员,主要是父母和照顾者,参与了各种研究角色,包括研究设计,干预交付,实施和传播.
只有3项研究使用了正式的参与措施,限制了与护理系统变化相关联的参与能力.

结论:

关于家庭参与研究的描述是不一致的.
在未来的研究中,对参与的标准化和透明报告非常需要.
建议使用参与度测量工具来推进现场并证明影响.

关键词:

这就是CYSHCN.和家庭伙伴关系.家庭参与家庭参与生活经验合作伙伴的经验.病人的病人的病人的病.研究的研究研究的研究.护理系统的护理系统.

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