探索影响罕见神经疾病患者参与体力活动的方式的问题
Valentina Buscemi1,2, Annette Boaz3,4, Helen Dawes5
1Queen Square Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery, UCLH NHS Trust, London, UK.
Disability and rehabilitation
|July 4, 2023
概括
患有罕见神经疾病的人需要更多的支持和知识来维持身体活动. 解决环境,人际和内在障碍对于增加RNC患者参与体育活动至关重要.
科学领域:
- 神经学 神经学
- 康复医学 康复医学 康复医学
- 公共卫生 公共卫生
背景情况:
- 患有罕见神经疾病 (RNCs) 的人在维持定期体力活动 (PA) 方面面临重大挑战.
- 对于患有RNC的人,他们的照顾者和有关PA的医疗保健专业人员 (HCP) 的具体经验和需求的了解有限.
- 这种差距阻碍了制定有效的支持策略.
研究的目的:
- 探索与RNCs,他们的照顾者和HPs有关参与PA的个人的经验.
- 为了确定障碍和促进者PA的人与RNCs.
- 为制定有针对性的干预措施提供信息,以改善该人口中的PA水平.
主要方法:
- 共同设计了三项调查 (针对RNC个人,护理人员,医疗人员),包括RNC慈善机构代表的主题和专家意见.
- 通过慈善网络,社交媒体和专业道传播调查.
- 分析了436名参与者的回答 (225名RNC个人,94名护理人员,117名医疗人员).
主要成果:
- 大多数有RNC的人都参与了一些PA,但需要动力和知识来维持它.
- 受访者报告说,缺乏资源和支持,以保持活跃.
- 医疗人员承认PA对RNC的重要性,但指出缺乏指导他们的证据和资源.
结论:
- 在环境/组织,人际关系和人际关系层面上存在PA的关键障碍,这表明英国卫生服务内部缺乏支持.
- 针对这些已识别的因素,可以提高RNC患者的PA参与度.
- 改善RNC和专业人士的知识和基于证据的资源对于促进安全和适当的PA参与至关重要.
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