重新设计严重疾病对话指南:一种混合方法社区参与的修订过程
Joanna Paladino1, Catherine Schofield2, Rebekah Angove3
1Massachusetts General Hospital (J.P., C.D.), Boston, Massachusetts, USA; Ariadne Labs (J.P., C.S., A.M., S.D., E.K.F.), Health System Innovation Center at Brigham & Women's Hospital and Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA; Harvard Medical School (J.P., C.D., E.K.F.), Boston, Massachusetts, USA.
Journal of pain and symptom management
|February 14, 2026
概括
重症疾病对话指南被修订为更具包容性和可访问性. 患者和护理人员的反确保了更新的指南强调希望,伙伴关系和不同人群的情感安全.
科学领域:
- 医学沟通 医学沟通
- 健康 公平 卫生 公平
- 以患者为中心的护理
背景情况:
- "严重疾病对话指南"为讨论严重疾病的价值观,目标和预后提供了一个框架.
- 之前的实施和研究强调了它在各种临床环境和患者群体中的实用性.
- 鉴定出需要加强多元化人口的包容性和可访问性.
研究的目的:
- 完善严重疾病对话指南,以提高包容性和可访问性.
- 纳入来自不同患者和护理人员顾问的反.
- 改善严重疾病对话的框架.
主要方法:
- 使用了一个社区参与的,代的修订过程.
- 从国家卫生公平专家和跨专业临床医生 (n=59) 收集了反.
- 来自不同种族/种族背景的患者和护理人员顾问 (n=11) 通过重点小组,采访和调查来改进和评估变化.
主要成果:
- 对指南的介绍,预后,疾病理解和关键能力部分进行了重大修订.
- 关键主题包括建立信任,敏感的预后沟通,平衡希望和同情联系.
- 经过修订的指南被认为对文化和身份敏感 (8/9名顾问),而不是在情感上令人不安 (9/9名顾问).
结论:
- 修订成功地提高了指南的包容性和可访问性.
- 更新的指南强调了希望,伙伴关系和对齐.
- 患者和护理人员顾问发现修订后的指南在情感上是安全和可接受的.
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