鼓励家庭参与研究的多样性:反思知识翻译工具的发展
Janet W T Mah1, Katie Nickerson2
1BC Children's Hospital, University of British Columbia, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada. jmah@bcchr.ca.
Research involvement and engagement
|October 14, 2023
概括
开发知识翻译工具,如信息图表,可以增强家庭与研究人员合作伙伴关系的多样性,以实现以患者为导向的研究. 这些工具解决了障碍,并促进了科学努力的包容性参与.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者参与 患者参与
- 知识 翻译 翻译
背景情况:
- 家庭参与对于有影响力的研究至关重要,但北美患者的合作伙伴往往缺乏多样性.
- 边缘化和服务不足的人群在患者家庭和研究人员伙伴关系中代表性不足.
- 该项目旨在开发工具,以促进研究合作的更多多样性.
研究的目的:
- 创建知识翻译工具,鼓励患者与家人和研究人员伙伴关系的多样性.
- 解决代表性不足的人群参与研究的障碍.
- 促进文化敏感和有吸引力的参与策略.
主要方法:
- 一个多元化,跨加拿大团队与精神健康和神经发育条件生活和专业经验合作.
- 开发了三个面向患者的信息图 (英语,中文,波斯语) 和一个针对研究人员的信息图.
- 内容由文献评论和家庭参与研究证书课程提供信息,为文化敏感性提供同行咨询.
主要成果:
- 共同设计的信息图表被创建,以促进家庭参与研究的多样性.
- 面向患者的信息图表涵盖了研究基础知识,加入的原因,角色和沟通.
- 针对研究人员的信息图表侧重于与多样化的患者群体建立伙伴关系和有效的沟通.
结论:
- 信息图表是共同设计的,以增强家庭参与研究的多样性.
- 项目课程包括克服团队协作和使用在线平台的设计局限性等障碍.
- 未来的计划包括翻译,更广泛的传播和评估信息图形的有效性.
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