与患者和护理人员合作,为受肝硬化影响的人群创建基于网络的教育资源
Emily Johnson1, Ashley Hyde1, Derek Drager2
1Division of Gastroenterology (Liver Unit), University of Alberta, Edmonton, AB, Canada.
PEC innovation
|September 14, 2023
概括
患者和护理人员的合作创建了一个全面的肝硬化教育网站和视频. 这种以患者为中心的方法确保了资源有效地满足肝硬化患者的需求.
科学领域:
- 数字健康教育 数字健康教育
- 患者参与到研究中.
- 肝病学患者资源 肝病学患者资源
背景情况:
- 为肝硬化等慢性疾病开发有效的教育材料是一项挑战.
- 患者和护理人员的观点对于创建相关和可访问的健康信息至关重要.
- 现有的在线资源可能无法充分满足肝硬化患者的各种需求.
研究的目的:
- 描述多式联络,基于网络的肝硬化教育资源的发展.
- 概述以患者为中心的方法,使用患者导向研究战略 (SPOR) 患者参与框架.
- 与患者和护理人员合作,创建高质量的数字学习工具.
主要方法:
- 采用了一种由SPOR患者参与框架指导的代五阶段过程.
- 一个由16名患者和护理人员组成的患者咨询小组 (PAT) 在整个开发过程中进行了合作.
- 进行了内容优先级,网站/视频设计,反集成,可访问性改进和可用性测试.
主要成果:
- 一个55页的网站和78个视频涵盖肝硬化并发症,手术,营养和炼,在两年内创建.
- 使用大声思考方法的可用性测试评估了导航,外观和内容.
- 持续收集数据的重点是页面的相关性,易用性和内容价值.
结论:
- 临床医生-患者-护理人员的合作对于高质量的数字健康教育至关重要.
- 这种以患者为中心的方法可以指导其他组织解决疾病特异性的知识差距.
- 未来的工作包括 www.cirrhosiscare.ca 的代改进和结构化影响评估.
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