患者和家庭生活在Krabbe疾病的经验
Yuta Koto1, Wakana Yamashita2, Kumiko Kitamura3
1Faculty of Nursing, Graduate School of Nursing, Kansai Medical University, Hirakata, Japan.
Journal of patient experience
|January 17, 2025
概括
这项研究探讨了克拉贝病患者和家属面临的挑战,并确定了对日常生活和医疗保健系统的影响. 调查结果强调需要更好的支持和生活质量评估工具.
科学领域:
- 神经学 神经学
- 罕见疾病 罕见疾病
- 患者的生活质量.
背景情况:
- 对于患者及其家人来说,病带来了重大挑战.
- 了解这些挑战对于改善患者护理和生活质量至关重要.
研究的目的:
- 为了识别和阐明克拉贝病患者所面临的多方面的挑战.
- 为开发评估患者生活质量的方法提供信息.
主要方法:
- 从2022年3月到12月使用半结构面试 (面对面/在线) 进行的定性描述性研究.
- 用于分析晚期婴儿,青少年和成人克拉贝病患者的数据的定性内容分析方法.
- 249个代码的提取,整合到40个子类别和8个类别,形成三个主要主题.
主要成果:
- 确定了三个关键主题:症状对日常生活的影响,医疗保健系统的挑战和家庭护理人员负担.
- 患者经历身体症状,社会生活困难和医疗保健挑战.
- 家庭报告了与照顾Krabbe病患者相关的重大负担.
结论:
- 为克拉贝病患者和家属开发强大的支持系统至关重要.
- 需要改善生活环境和治疗支持,以应对患者和家庭的挑战.
- 需要一个全面的尺度来准确地衡量影响患者和家庭的社会挑战.
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