Department of Anatomy, JSS Medical College, JSS Academy of Higher Education and Research, Mysore, India.
Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India.
J Natl Med Assoc. 2023 Dec;115(6):556-565. doi: 10.1016/j.jnma.2023.09.006. Epub 2023 Oct 14.
Sickle Cell Disease (SCD) is the most prevalent hemoglobinopathy, impacting around 5% of the global population. The Indian tribal population, which has been a key focus of the Indian SCD program, can experience health-related stigma due to the multidimensional impact of the disease. This preliminary qualitative inquiry delves into the lived experiences of individuals and synthesizes domains to identify the sources of stigma.
The study's framework for developing the stigma tool was rooted in Bronfenbrenner's Ecology of Human Development. The study was implemented in five tribal-dominated districts of India and involved in-depth interviews with sickle cell disease (SCD) patients and their caregivers to explore their stigmatizing experiences.
The analysis revealed four overarching themes and several subthemes explaining the type of stigma, its source, and factors contributing to stigmatization. First, the study focused on elements associated with perceived stigma, such as disclosure, self-isolation/refusal to participate, and self-judgment. The second theme pertained to the internalization of stigma. The third theme addressed experienced stigma concerning the disease's impact on day-to-day events, and the fourth theme explored the support system patients needed. The framework highlighted the varying degrees of stigmatizing components within different aspects of patients' ecology.
Our study highlights the importance of addressing stigma at various levels. Policies, programs, and healthcare interventions must target stigma across these levels. Culturally adaptive tools for identifying stigma, implementing appropriate interventions, and improving healthcare participation are essential for enhancing the quality of life and reducing the disease burden.
镰状细胞病（SCD）是最常见的血红蛋白病，影响全球约 5%的人口。印度部落人口一直是印度 SCD 计划的重点关注对象，由于疾病的多维度影响，他们可能会经历与健康相关的污名化。本初步定性研究深入探讨了个体的生活体验，并综合了各个领域，以确定污名化的来源。
研究中开发污名工具的框架植根于布伦芬布伦纳的人类发展生态学。该研究在印度五个以部落为主的地区实施，对镰状细胞病（SCD）患者及其照顾者进行了深入访谈，以探讨他们的污名化体验。
分析揭示了四个总体主题和几个子主题，解释了污名的类型、来源以及导致污名化的因素。首先，研究重点关注与感知污名相关的因素，如披露、自我隔离/拒绝参与和自我评判。第二个主题涉及污名的内化。第三个主题涉及与疾病对日常生活事件的影响有关的经历污名化，第四个主题探讨了患者所需的支持系统。该框架突出了患者生态系统不同方面中污名化成分的不同程度。
我们的研究强调了在各个层面解决污名化问题的重要性。政策、计划和医疗保健干预措施必须针对这些层面的污名化问题。针对识别污名、实施适当干预措施和改善医疗保健参与的文化适应性工具对于提高生活质量和减轻疾病负担至关重要。
