Study on stigma faced by people with sickle cell disease
A study co-authored by Deepa Bhat, professor in Anatomy and certified genetic counsellor, JSS Medical College, Mysuru has been published in The Lancet Regional Health – Southeast Asia, marking a national breakthrough in stigma research related to sickle cell disease, said the JSS Academy of Higher Education and Research (JSS AHER), Mysuru.
'It (the study) is a milestone in public health and genetic research,' the JSS AHER said in a release here. JSS Medical College is the constituent college of JSS AHER.
The release said the study introduces the ICMR-SCD Stigma Scale for India (ISSSI) – 'the first scientifically validated tool from India to assess the multi-dimensional stigma faced by the people living with SCD and their caregivers.'
Developed under the leadership of Dr. Bonta V. Babu and funded by the ICMR National Task Force Project under the Socio-Behavioural Research Division, the ISSSI is a culturally attuned and linguistically adaptable scale, tailored to the Indian context.
The multi-centric study involved fieldwork across six tribal regions in collaboration with the Central Tribal University, Vizianagaram, Bodoland University, Assam, Parul University, Vadodara, ICMR-RMRC, Bhubaneshwar and JSS Medical College of JSS AHER, Mysuru.
'The scale captures stigma across key domains – familial, illness burden, interpersonal relationships, healthcare interactions and social disclosure – and is now positioned as a vital tool for the National Sickle Cell Anaemia Elimination Mission,' the release stated.
The ISSSI tool is now available for use in clinical settings, community outreach and health systems research, enabling policymakers, clinicians and researchers to address stigma with precision and empathy, according to the university.
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