印度部落人口中状细胞病的耻辱:一个多中心的定性研究
Deepa Bhat1, Bontha V Babu2, Shaily B Surti3
1Department of Anatomy, JSS Medical College, JSS Academy of Higher Education and Research, Mysore, India.
Journal of the National Medical Association
|October 16, 2023
概括
状细胞疾病 (SCD) 在印度部落人口中的耻辱是多维的,影响日常生活和支持系统. 解决耻辱需要在多个生态层面进行文化敏感的干预,以改善患者的生活质量.
科学领域:
- 医学社会学 医学社会学
- 公共卫生 公共卫生
- 遗传学 是一个遗传学.
背景情况:
- 状细胞疾病 (SCD) 是一种普遍存在的全球血红蛋白病,影响大约5%的人口.
- 由于SCD的多维影响,印度部落人口面临着与健康有关的重大耻辱.
- 这项定性研究探讨了生活经验,以确定这个社区内的耻辱来源.
研究的目的:
- 调查印度部落人口中患有状细胞疾病 (SCD) 的个人的生活经历.
- 确定与SCD相关的与健康相关的耻辱的来源和贡献因素.
- 为有针对性的干预开发综合了耻辱的领域.
主要方法:
- 利用Bronfenbrenner的人类发展生态学作为耻辱工具开发的框架.
- 对印度五个部落地区的SCD患者和护理人员进行了深入采访.
- 通过定性调查,探索患者和护理人员的污名化经历.
主要成果:
- 识别了污名的四个总体主题:感知污名 (披露,自我隔离),内化污名,经历污名 (日常生活影响) 和支持系统需求.
- 揭示了不同程度的污名化成分在不同生态水平的患者的生活.
- 详细的子主题说明了与SCD相关的耻辱的类型,来源和贡献因素.
结论:
- 强调在多个层面 (个人,社区,政策) 解决耻辱的必要性.
- 建议文化适应性工具用于耻辱识别和干预.
- 强调改善医疗参与和减少疾病负担以提高生活质量的干预措施的重要性.
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