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开发,实施和评估神经肌肉疾病患者的护理管理模型:参与式混合方法研究协议.

Veronika Waldboth1, Christina Schuler1, Raffaella Willmann2

  • 1Department of Health Sciences, Institute of Nursing, ZHAW Zurich University of Applied Sciences, Winterthur, Switzerland.

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|February 24, 2026
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概括

这项研究开发并评估了瑞士神经肌肉疾病 (NMDs) 患者的以家庭为中心的护理管理模式. 该模型旨在改善患者及其家人的护理协调和生活质量.

关键词:
瑞士 瑞士 瑞士 瑞士 瑞士 瑞士 瑞士护理管理 护理管理护理人员负担的负担护理人员的护理人员混合方法混合方法.神经肌肉疾病 神经肌肉疾病人们的生活质量.罕见的疾病 罕见的疾病研究协议研究协议.

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科学领域:

  • 神经学 神经学
  • 医疗保健管理的管理
  • 公共卫生 公共卫生

背景情况:

  • 神经肌肉疾病 (NMDs) 是一种影响生活质量的渐进性疾病,需要广泛的护理.
  • 随着NMD患者的年龄增长,护理人员的负担会增加,需要专门的支持.
  • 瑞士目前的NMD护理缺乏标准化和对家庭需求的明确理解.

研究的目的:

  • 评估瑞士现有的NMD护理实践,并确定未满足的需求.
  • 为NMD患者和家属开发和实施一种新的护理管理模式.
  • 加强专门的神经肌肉中心内的支持结构,改善健康结果.

主要方法:

  • 进行了一项三期参与式混合方法研究 (Care-NMD-CH).
  • 第1阶段涉及使用定性和定量数据评估当前的护理实践.
  • 第二阶段专注于共同开发护理管理模型和培训计划,随后在试点中心实施和评估.

主要成果:

  • 伦理审批于2020年获得,基线数据收集于2021年.
  • 该NMD护理管理模型已开发并于2022年完成.
  • 实施始于2023年,遍布8个中心,正在进行数据收集以进行评估.

结论:

  • 该研究为NMD患者建立了基于证据的,以家庭为中心的护理管理服务.
  • 该项目确定了护理缺口,开发了一个结构化的模型,并评估了其影响.
  • 预期的结果包括改善护理协调,生活质量,自我效能和减少护理人员负担.