患者和护理伙伴的声音在ALS:塑造行为健康和协作护理
Christina L Rush1, Ethan G Lester1, Kush Mehta2
1Center for Health Outcomes and Interdisciplinary Research (C.L.R., E.G.L., M.S., A.M.V.), Department of Psychiatry, Massachusetts General Hospital/Harvard Medical School, Boston, Massachusetts, USA.
Journal of pain and symptom management
|October 30, 2025
概括
许多患有肌缩侧面硬化症 (ALS) 的人和他们的护理伙伴经历了情绪上的痛苦,但行为健康需求往往没有得到满足. 将定制支持整合到护理中可以改善福祉.
科学领域:
- 神经科学是一个神经科学.
- 心理学 心理学 心理学
- 公共卫生 公共卫生
背景情况:
- 肌缩侧面硬化症 (ALS) 是一种致命的神经退行性疾病,影响情绪健康.
- 几乎一半的ALS (pALS) 患者及其护理伙伴面临着严重的情绪困扰,特别是在诊断时.
- 在临床环境中,pALS和护理合作伙伴的行为健康需求被不一致地解决.
研究的目的:
- 调查pALS和护理伙伴对情绪痛苦的看法.
- 了解他们的行为健康需求,偏好和资源的获取.
- 识别障碍物和促进者,以获得行为健康护理.
主要方法:
- 在线调查对134名参与者 (88名pALS,46名护理合作伙伴) 进行了在线调查,这些参与者通过ALS非营利性listservs.
- 该调查包括有关行为健康史,当前需求,服务获取和首选护理方法的问题.
- 封闭式和开放式问题都被用来收集全面的数据.
主要成果:
- 超过59%的参与者报告说缺乏行为健康查.
- 近48%的pALS患者在ALS诊断后接受了新的行为健康诊断.
- 大多数pALS (52.3%) 和护理伙伴 (69.6%) 在诊断时表示需要行为健康护理,并对各种提供者开放.
结论:
- 在解决pALS和护理合作伙伴的行为健康需求方面存在重大差距.
- 在跨学科的ALS护理中,有机会加强行为健康支持.
- 在关键转型时,经过培训的提供者提供灵活,量身定制的干预措施可以改善情绪健康和生活质量.
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