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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.
JMIR research protocols
|February 24, 2026
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.
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.
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