多发性硬化症患者的疾病代表性:一项初步叙事医学研究
T Paolucci1, M Reho2, C Ciacchella2
1Department of Medical, Oral and Biotechnological Sciences (DSMOB), Physical Medicine and Rehabilitation, G. D'Annunzio University of Chieti-Pescara, Chieti, Italy.
Multiple sclerosis journal - experimental, translational and clinical
|September 27, 2024
概括
了解多发性硬化症患者如何看待他们的疾病是关键. 疾病表示与护理人员的支持,康复,疲劳和损伤有关,为个性化护理提供信息.
科学领域:
- 神经学 神经学
- 心理学 心理学 心理学
- 康复科学 康复科学 康复科学
背景情况:
- 多发性硬化症 (MS) 的个性化干预需要了解患者的疾病表征.
- 患者对MS的看法对于开发有效的应对策略和治疗至关重要.
研究的目的:
- 检查多发性硬化患者疾病表征与背景因素之间的关系.
- 在MS患者中调查疾病表现,疲劳,疼痛和神经功能障碍之间的关联.
主要方法:
- 对28名多发性硬化症患者的采访进行了定性分析.
- 自动化文本分析确定了四种不同的疾病表征:日常生活,寻找意义,关系和应对/成长.
主要成果:
- 与护理人员的存在相关的关系性疾病表示.
- 应对/成长的表现与康复计划的参与有关.
- 日常生活的表现与较低的疲劳,但较高的神经障碍有关.
结论:
- 疾病表征为定制MS干预提供了宝贵的见解.
- 了解患者的观点有助于医疗保健专业人员设计多发性硬化症的以患者为中心的护理计划.
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