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.

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Journal
Pediatric Blood & Cancer
Published
2025-10-17
DOI
https://doi.org/10.1002/pbc.32116
Primary Topic
Hemoglobinopathies and Related Disorders
Type
article
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0.00
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article

Sickle Cell Disease‐Related Stigma: Quantitative Assessment From India

Madhusmita Bal, Yogita Sharma, Manoranjan Ranjit‬, Jatin Sarmah et al.
Pediatric Blood & Cancer
Hemoglobinopathies and Related Disorders
article

Sickle Cell Disease‐Related Stigma: Quantitative Assessment From India

Madhusmita Bal, Yogita Sharma, Manoranjan Ranjit‬, Jatin Sarmah, Parikipandla Sridevi, Deepa Bhat, Shaily B. Surti, Bontha V. Babu, Rabindra Kumar Jena
article en

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.

Pediatric Blood & CancerVol. 73(1)
JSS Academy of Higher Education and Research (IN), Bodoland University (IN), Sriram Chandra Bhanja Medical College Hospital (IN), Indian Council of Medical Research (IN), Regional Medical Research Centre (IN), Institute of Medical Sciences (IN), Parul University (IN)
Openalex Percentile: Top 59%
Hemoglobinopathies and Related Disorders
DOISourceOpenAlex
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