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Updated: Jan 14, 2026

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Sickle Cell Disease-Related Stigma: Quantitative Assessment From India
Bontha V Babu1, Yogita Sharma1, Parikipandla Sridevi2
1Division of Socio-Behavioural, Health Systems & Implementation Research, Indian Council of Medical Research, New Delhi, India.
None:
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.
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