瑞典多发性硬化症患者的非正式帮助和背景因素之间的关联:一个横截面研究
Daniel Ståhl1,2, Emilie Friberg2
1Department of Social Work, University of Gothenburg, Gothenburg, Sweden daniel.stahl@socwork.gu.se.
BMJ open
|September 15, 2025
概括
多发性硬化症 (MS) 患者具有较高的损伤,异国出生或疾病福利,更多地依赖非正式的帮助. 障碍程度是MS个体寻求非正式支持的主要驱动因素.
科学领域:
- 神经学 神经学
- 社会科学 社会科学 社会科学
- 公共卫生 公共卫生
背景情况:
- 多发性硬化症 (MS) 通常需要日常生活的协助.
- 非正式的 (无偿) 护理比MS患者的正式护理更为普遍.
- 了解影响非正式帮助使用的因素对于支持系统至关重要.
研究的目的:
- 调查多发性硬化症患者在瑞典的社会人口因素和非正式帮助利用之间的关联.
- 确定MS患者每周使用的非正式帮助数量.
- 确定与非正式护理需求相关的特定社会人口统计变量.
主要方法:
- 使用了横截面调查数据与瑞典国家登记数据相结合.
- 调查了4412名20-51岁多发性硬化症 (MS) 患者.
- 采用后勤和线性回归分析来评估非正式帮助的使用和时间.
主要成果:
- 更高的损伤 (MS扩展残疾状况表) 显示,与非正式帮助使用的联系最强 (OR 6.94).
- 出生的国家 (最强的积极关系,B 0.50) 和生活情况 (最强的不利关系,B -0.65) 影响了每周的非正式帮助时间.
- 出生在国外,领取疾病津贴和更高的损伤与非正式帮助的使用和时间都有积极的联系.
结论:
- 损伤程度是MS中非正式帮助使用的主要决定因素.
- 出生国和疾病津贴的收到凸显了可能过度依赖非正式护理的弱势子组.
- 调查结果表明,需要探索针对特定多发性硬化症患者群体的正式支持可访问性.
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