Bontha V Babu, Yogita Sharma, Parikipandla Sridevi, Shaily B Surti, Madhusmita Bal, Deepa Bhat, Jatin Sarmah, Manoranjan Ranjit, Rabindra K Jena
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引用次数: 0
摘要
本多地点横断面研究使用印度医学研究委员会的印度SCD病耻感量表,在208名成年患者和184名护理人员中定量评估了与印度镰状细胞病(SCD)相关的病耻感。大约27%的患者和41%的护理人员报告了严重或非常严重的耻辱感。“家庭和生殖”、“疾病负担”和“感知责备和社会判断”的污名域起了重要作用。有序logistic回归分析发现,患者疼痛发作(AOR = 1.199, p = 0.013)、护理者性别(AOR = 0.300, p = 0.016)和收入(AOR = 0.999, p = 0.048)是与病耻感严重程度相关的显著因素。研究结果强调了巨大的社会心理负担,并强调了将文化基础的多层次干预措施纳入SCD护理计划的必要性,以全面解决耻辱感问题。
Sickle Cell Disease-Related Stigma: Quantitative Assessment From India.
This multisite cross-sectional study quantitatively assessed stigma related to sickle cell disease (SCD) in India using the Indian Council of Medical Research-SCD Stigma Scale for India among 208 adult patients and 184 caregivers. Approximately 27% of patients and 41% of caregivers reported severe or very severe stigma. 'Familial & reproductive', 'illness burden' and 'perceived blame & social judgement' stigma domains contributed significantly. Ordinal logistic regression analysis identified pain episodes in patients (AOR = 1.199, p = 0.013) and caregiver gender (AOR = 0.300, p = 0.016) and income (AOR = 0.999, p = 0.048) as significant factors associated with stigma severity. The findings underscore a substantial psychosocial burden and highlight the need for culturally grounded, multilevel interventions integrated into SCD care programs to address stigma comprehensively.
期刊介绍:
Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases as they affect children, adolescents, and young adults. Pediatric Blood & Cancer will also include studies on such treatment options as hematopoietic stem cell transplantation, immunology, and gene therapy.