患者对耻辱的经验作为代谢功能障碍相关的脂肪性肝病的隐藏负担:一项描述性的定性研究与主题分析
Johanne Lisa Jensen-LeBlanc1, Pernille Andreassen2, Mette Munk Lauridsen1,3
1Department of Gastroenterology, University Hospital of Southern Denmark, 6700 Esbjerg, Denmark.
耻辱感显著影响了与代谢功能障碍相关的脂肪性肝病 (MASLD) 患者,影响了他们的护理和福祉. 通过教育和整体支持解决耻辱是改善患者结果的关键.
科学领域:
- 肝病学 肝病学是一种肝病学.
- 心理社会医学 心理社会医学
- 公共卫生 公共卫生
背景情况:
- 与代谢功能障碍相关的脂肪性肝病 (MASLD) 是与肥胖和代谢综合征相关的全球健康问题.
- 患者的污名化在MASLD中很普遍,加剧了心理痛苦并阻碍了护理.
- 了解MASLD耻辱的多面性质对于以患者为中心的方法至关重要.
研究的目的:
- 探索患者对与MASLD相关的耻辱的经验和解释.
- 调查MASLD在医疗,社会和个人环境中的心理社会负担.
- 为减少对MASLD患者的耻辱和促进公平护理的策略提供信息.
主要方法:
- 匿名在线调查问卷对23名被诊断患有MASLD的成年人进行了管理.
- 该研究使用了11个开放式问题来收集关于耻辱经历和应对机制的数据.
- 根据布劳恩和克拉克的框架,采用主题分析来分析定性反应.
主要成果:
- 出现了三个关键主题:诊断/医疗经验,情感/社会影响以及应对/宣传.
- 参与者报告了偶然的诊断,对生活方式选择的责怪,以及不充分的医疗指导.
- 焦虑,抑郁,社会退缩和自我责怪是常见的,除了同行支持和自我教育等应对策略之外.
结论:
- 耻辱感极大地影响了MASLD患者的医疗体验,情绪状态和社会生活.
- 干预措施应应对多层次的耻辱,包括医疗保健专业教育和整体护理模式.
- 需要进一步的研究,以制定有效的耻辱减少策略和改善护理公平.
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