Indian Council of Medical Research (ICMR)-Sickle cell disease (SCD) Stigma Scale for India (ISSSI): development and psychometrics
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Date
2025
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Abstract
Background Sickle Cell Disease (SCD) places a significant psychological and social burden on patients and their
caregivers, often leading to stigma that further diminishes their quality of life. Despite the huge burden of SCD and
associated stigma in India, not much research has been done, and no stigma measurement tool is available. Hence,
the Indian Council of Medical Research (ICMR) has undertaken a multi-centric study to develop the ICMR-SCD
Stigma Scale for India (ISSSI).
Methods A systematic approach was employed, beginning with item generation, content validity assessment, pretesting and psychometric validation. This process included exploratory factor analysis demonstrating strong factor
loadings. Subsequently, confirmatory factor analysis was conducted to assess model fit, leading to refined scales of 16
items for patients and 17 items for caregivers.
Findings This study explicitly developed and validated the ISSSI for Indian SCD patients (ISSSI-Pt) and their caregivers (ISSSI-Cg). The finalized scales capture multidimensional aspects of stigma, including familial and reproductive, social disclosure, illness burden, interpersonal, and healthcare interaction challenges. The findings
underscore the scales’ psychometric robustness and utility in clinical and research settings.
Interpretation The methodological rigour employed in the scale development makes it a robust tool for understanding
SCD-related stigma among Indian SCD patients and their caregivers in clinical and research contexts. The
development of the ISSSI represents a significant advancement in understanding and addressing the multifaceted
stigma associated with SCD in India. Future studies should apply these scales across diverse cultural and
linguistic contexts to enhance their generalizability and impact.
Funding Indian Council of Medical Research (Grant Number: NTF/SCD-Stigma/2022/SBHSR).