了解多发性硬化症中的耻辱:工作场所的歧视,社会挑战和心理影响
Nazlı Gamze Bülbül1, Abdulkadir Tunç2, Sena Destan Bünül3
1Department of Neurology, University Of Health Sciences, Sultan Abdulhamid Han Research and Training Hospital, Istanbul, Turkey. nzl.gmzb@gmail.com.
Acta neurologica Belgica
|June 24, 2025
概括
耻辱严重影响多发性硬化症 (MS) 患者,影响工作和社会生活. 疲劳是与工作有关的主要症状,但很少有人寻求支持,强调需要有针对性的干预措施.
科学领域:
- 神经学 神经学
- 社会科学 社会科学 社会科学
背景情况:
- 污名化对患有多发性硬化症 (MS) 的人来说是一个重大挑战,影响了他们的社会互动,工作和日常生活.
- 了解污名的流行和影响对于制定有效的支持策略至关重要.
研究的目的:
- 调查患有多发性硬化症 (PwMS) 的人群中耻辱的流行和严重程度.
- 检查耻辱对PwMS工作生活的具体影响.
- 识别与MS污名相关的关键症状和挑战.
主要方法:
- 一项涉及420名PwMS的横截面研究.
- 使用了NeuroQoL耻辱简体表格和直接的耻辱调查来评估耻辱.
- 通过在线调查收集人口,临床,工作场所和社会数据.
主要成果:
- 报告的耻辱的高患病率:77%在直接调查中和67.6%在NeuroQoL尺度上.
- 耻辱的严重程度与进展性多发性硬化和更高的EDSS分数相关.
- 疲劳 (73.3%) 是最令人不安的症状,也是工作生活的主要投诉 (41.2%);只有7.3%的人寻求心理支持.
结论:
- 在MS中,耻辱是普遍存在的,与疾病的严重程度,工作场所的困难和社会退缩有关.
- 干预措施应解决耻辱的心理和社会方面.
- 对于PwMS面临耻辱的职场教育和支持至关重要.
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