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This is a Cross-Sectional Study study (also classified as: Quantitative Study).

October 19, 2025Open Access

Sickle Cell Disease‐Related Stigma: Quantitative Assessment From India

BBBontha V. BabuIndian Council of Medical Research YSYogita SharmaSymbiosis International University PSParikipandla SrideviIndira Gandhi National Tribal University

Key Points

Approximately 27% of patients and 41% of caregivers reported severe stigma, reflecting a significant psychosocial burden.
Key stigma domains include familial and reproductive, illness burden, and perceived blame, emphasizing the complexity of stigma.
Ordinal logistic regression identified pain episodes and caregiver factors such as gender and income as significant stigma severity correlates.
The findings point to a need for multilevel, culturally adapted interventions aimed at reducing stigma in sickle cell care.

Abstract

ABSTRACT 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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