Prime Highlights:
- Indian researchers have created the ICMR-SCD Stigma Scale (ISSSI), the first scientifically validated tool in India to quantify stigma among sickle cell disease patients and caregivers.
- The scale has now received clearance for clinical and research use in India with the hopes of a better understanding and combating social stigma around Sickle Cell Disease (SCD).
Key Facts:
- The ISSSI exists in caregiver (ISSSI-Cg) and patient (ISSSI-Pt) versions, and both measure stigma from each direction.
- It measures several dimensions of stigma such as family expectations, reproductive issues, disclosure, burden of illness, interpersonal, and aversive care.
Key Background:
Sickle Cell Disease (SCD) is an inherited blood disease resulting from faulty hemoglobin, which deforms the red blood cells into a sickle shape and results in disasters of excruciating crises and organ injury and stroke complications. In India, SCD disproportionately affects tribes from the states of Madhya Pradesh, Maharashtra, and Gujarat. The long-term nature of the disease not only presents physical health challenges but also places patients and their families squarely at high social stigma.
Stigma for SCD in the majority of instances is experienced as discrimination, social rejection, and negative attitudes toward the affected. Social stigma hindered diagnosis, minimizes adherence to treatment, and causes emotional distress, further hampering management of the disease. Being a key determinant of health outcomes, the researchers have encouraged the use of an organized instrument to measure and combat it.
To negate this, the Indian Council of Medical Research (ICMR) spearheaded the creation of the ICMR-SCD Stigma Scale (ISSSI), the first evidence-based scale created for the Indian context. The ISSSI has two adapted versions, namely ISSSI-Pt for caregivers and ISSSI-Cg for patients, enabling comprehensive capture of stigma perceived in families and communities. The scale measures a range of stigma dimensions including perceived stigma, internalized stigma, concerns regarding disclosure, and discriminatory events in health facilities.
Validation procedure affirmed the effectiveness and validity of the ISSSI, which in turn got national-level clearance for its use in clinical as well as research settings on a large scale. Implementation at this scale is predicted to enable stigma-reduction interventions targeting them, increase social support, and enhance the quality of life among SCD patients and their caregivers.
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