通过在线儿童和家长研究咨询小组构建孩子的试验所吸取的经验教训:描述性,定性研究
Simone Lepage1,2, Barbara Whelan3,4, Laura Flight5
1School of Nursing and Midwifery, University of Galway, 26 Upper Newcastle, Galway, H91 E3YV, Ireland. s.lepage1@universityofgalway.ie.
Research involvement and engagement
|July 2, 2025
概括
公众和患者参与 (PPI) 的健康研究,像孩子的试验,增强包容性和相关性. 让儿童和家长参与咨询小组提高了科学素养和试验设计.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者和公众参与 (PPI)
- 儿科临床试验儿童临床试验
背景情况:
- 卫生研究越来越多地要求公众和患者参与 (PPI),以实现包容性和相关性.
- PPI提高了公众参与度,并使试验目标与受益人的优先事项保持一致.
- 孩子的试验是一个与儿童共同创建的在线随机试验,以提高对试验的理解和批判性思维.
研究的目的:
- 建立和评估两个PPI小组的有效性:儿童研究咨询小组 (CRAG) 和家长研究咨询小组 (PRAG).
- 通过涉及来自不同背景的儿童和家长,确保在线随机试验的包容性和相关性.
- 探索PPI在线健康研究环境中的促进者,挑战和结果.
主要方法:
- 通过社交媒体和电子邮件活动招募了代表性的儿童 (7-12岁) 和来自不同背景的家长样本.
- 进行了在线PPI会议,设置了议程,实时更新,反调查和民意调查,并预先制定了薪酬计划.
- 分析了在线采访数据,使用反射主题分析来捕捉PPI合作伙伴的见解和经验.
主要成果:
- 来自六个国家的七个家庭单位 (八个孩子,七个父母) 参与了15周的时间.
- PPI 合作伙伴对试验设计作出了重大影响,为网站动画,美学和语言做出了贡献.
- 参与增强了儿童的学习和信心;儿童和成人均报告说,科学素养和沟通技能的提高.
结论:
- PPI活动,特别是儿童和家长参与咨询小组,有意义地塑造了试验的发展和流程.
- PPI合作伙伴经历了意想不到的积极成果,包括提高科学素养和信心.
- 这项研究为研究人员提供了关于在未来的PPI计划中吸引不同的人口统计数据的指导.
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