对于亨廷顿病患者的焦虑指导自助干预的经验和可接受性 (GUIDE-HD试验):一种定性研究
Maria Dale1, Katie Melvin1, Fiona Juliet Rosalind Eccles2
1Leicestershire Partnership NHS Trust, Mill Lodge, Narborough, Leicestershire, UK.
Neuropsychological rehabilitation
|December 16, 2025
概括
对亨廷顿病 (HD) 焦虑的指导自助是可以接受的,也是有前途的. 该GUIDE-HD干预改善了HD患者的焦虑,接受和关系 (pwHD).
科学领域:
- 神经退行性疾病 神经退行性疾病
- 心理干预 心理干预
- 数字健康数字健康
背景情况:
- 亨廷顿病 (HD) 经常与焦虑同时发生,但获得心理支持的机会有限.
- 有指导的自助提供了一个可扩展的,具有成本效益的解决方案,以改善患有慢性疾病的个人的心理健康护理可获得性.
研究的目的:
- 评估GUIDE-HD的可接受性和感知影响,这是一种远程引导的自我帮助干预,用于HD患者 (pwHD) 的焦虑.
- 确定针对pwHD的远程心理干预的潜在好处,挑战和改进.
主要方法:
- 定性研究采用半结构面试,对9名PwHD和3名护理人员进行面试.
- 使用框架分析来解释参与者与GUIDE-HD干预的经验.
主要成果:
- 参与者发现GUIDE-HD的干预是相关的,结构化的,可访问的,个性化的,并得到了良好的促进.
- 报告的好处包括减少焦虑,更好地接受患有HD的生活,改善人际关系.
- 该干预措施是可以接受的,并显示了pwHD的希望,尽管样本大小和性别代表性等局限性.
结论:
- 远程引导的自我帮助干预 GUIDE-HD 是一种有希望的,可接受的方法来管理亨廷顿病患者的焦虑.
- 量身定制的数字心理干预可以超越症状减轻,提高整体幸福感和应对pwHD.
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