状细胞疾病相关的耻辱:来自印度的定量评估
Bontha V Babu1, Yogita Sharma1, Parikipandla Sridevi2
1Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India.
Pediatric blood & cancer
|October 17, 2025
概括
在印度,高水平的耻辱感影响了状细胞病 (SCD) 患者和护理人员. 解决这种心理社会负担需要综合,文化敏感的干预措施,以改善SCD护理.
科学领域:
- 医学和健康科学医学和健康科学
- 心理学 心理学 心理学
- 社会学 社会学 社会学
背景情况:
- 状细胞病 (SCD) 在全球范围内构成了重大健康挑战.
- 与SCD等慢性疾病相关的耻辱感可能会对患者的福祉和获得医疗保健产生负面影响.
- 了解不同人群中SCD污名的具体维度和驱动因素对于有效的干预至关重要.
研究的目的:
- 量化评估印度状细胞病 (SCD) 的成年患者及其护理人员中耻辱的患病率和严重程度.
- 确定导致整体负担的耻辱的关键领域.
- 确定与该人口中耻辱的严重程度相关的因素.
主要方法:
- 采用了多站点,横截面的研究设计.
- 印度医学研究理事会-SCD印度的耻辱度表对208名成人SCD患者和184名护理人员进行了管理.
- 顺序逻辑回归分析被用来识别与耻辱严重程度相关的因素.
主要成果:
- 很大一部分患者 (27%) 和护理人员 (41%) 报告严重或非常严重的耻辱感.
- "家庭和生殖","疾病负担",以及"感知罪责和社会判断"是显著的耻辱领域.
- 患者的疼痛发作,护理人员的性别和护理人员的收入与耻辱严重程度有显著的关联.
结论:
- 状细胞疾病给印度的患者及其家人带来了相当大的心理社会负担,原因是耻辱感.
- 在SCD护理中整合的文化基础,多层次的干预措施对于全面解决耻辱是必不可少的.
- 需要进一步的研究和有针对性的支持计划,以减轻对SCD患者的耻辱的影响.
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