一个基于网络的同行支持网络,以帮助严重疾病患者的护理伙伴:共同设计研究
Elizabeth A O'Donnell1,2, Aricca D Van Citters2, Inas S Khayal2,3
1Communications, Marketing and Community Health, Alice Peck Day Memorial Hospital, Lebanon, NH, United States.
这项研究开发了一个基于网络的同行支持网络,用于重病患者的护理伙伴,以解决他们在疾病和丧亲期间对信息和情感支持的未满足需求.
科学领域:
- 医疗信息学 医疗信息学
- 患者支持系统 患者支持系统
- 数字健康数字健康
背景情况:
- 护理伙伴在严重疾病和丧亲期间面临重大挑战和未满足的需求.
- 对于同行支持的现有机会是不一致的,通常是不可用的.
- 分享经验可以为护理伙伴提供有价值的应对机制.
研究的目的:
- 设计和原型一个区域性的,方便的,基于网络的同行支持网络.
- 帮助活跃和丧亲的护理伙伴应对严重疾病和丧亲.
- 提高对护理合作伙伴面临的挑战的准备能力.
主要方法:
- 组建了一个由18名成员组成的共同设计团队,包括护理合作伙伴,患者和临床医生.
- 设计练习确定了同行支持网络的基本功能和规格.
- 共同设计成员优先考虑了网络功能,为基于Web的平台的早期代提供了信息.
主要成果:
- 网络设计优先将护理合作伙伴与信息联系起来,并促进情感支持.
- 关键特征包括一个支持性的社区,值得信赖的资源,减少寻求帮助的障碍,以及常见问题.
- 平台的设计强调了简单性,用户支持,隐私,可访问性以及公共和私人信息的混合.
结论:
- 共同设计有效地确定了农村同行支持网络的关键特征,用于重病护理合作伙伴.
- 最初的测试和使用ConnectShareCare网络是可行的.
- 目前正在进行进一步的研究,以评估网络的长期可行性和影响.
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