Latest news with #ICMR-SCDStigmaScaleforIndia
The Hindu
27-05-2025
- Health
- The Hindu
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.
Time of India
26-05-2025
- Health
- Time of India
Scientists develop, validate scale to measure stigma in patients with sickle cell disease
New Delhi: Researchers in India have developed and validated a scale to measure stigma in a patient suffering from sickle cell disease and their caregivers. Described in a paper in The Lancet Regional Health Southeast Asia journal, the ' ICMR-SCD Stigma Scale for India ' or ISSSI is the first such tool in the country and fourth in the world, available in clinical and research settings. India accounts for the second-highest prevalence of sickle cell disease in the world, following sub-Saharan Africa. The condition is a genetic disorder in which red blood cells are mis-shaped, affecting their ability to deliver oxygen. The team, including researchers from the Indian Council for Medical Research (ICMR), said that despite the huge burden of sickle cell disease and associated stigma in India, not much research has been done, and no stigma measurement tool is available. ISSSI characterises the nature of stigma under these categories -- perceived stigma, internalised stigma, experienced stigma and disclosure stigma. The team's study developed and validated the ISSSI for patients and caregivers across six districts where sickle cell disease is endemic, including Alluri Seetharama Raju in Andhra Pradesh and Anuppur in Madhya Pradesh. Findings highlight ISSSI's psychometric robustness and utility in clinical and research settings, the researchers said. "The ISSSI (captures) multidimensional aspects of stigma, including familial and reproductive, social disclosure, illness burden, interpersonal, and healthcare interaction challenges," the authors wrote. Future studies should apply the ISSSI scale across diverse cultural and linguistic contexts to improve its generalisability and impact, they said. People with sickle cell disease often suffer from episodes of severe pain, chronic fatigue, swelling, infections, and potential organ damage, significantly impacting their quality of life.
The Hindu
24-05-2025
- Health
- The Hindu
Study validates India's first ICMR-SCD Stigma Scale for sickle cell disease
India accounts for the second-highest prevalence of sickle cell disease (SCD) globally, following sub-Saharan Africa. However, not much research has been done, and no stigma measurement tool was available to India before the Indian Council of Medical Research (ICMR) recently developed India's first ICMR-SCD Stigma Scale for India (ISSSI). The three scales available globally were unsuitable due to India's diversity. India's stigma scale was developed following global standards and a recently published study has validated the ISSSI patient scale (ISSSI-Pt) and ISSSI caregiver scale (ISSSI-Cg) according to an article published in the Lancet (regional health South-East Asia) this month. ISSSI is the first in India and the fourth globally, available in clinical and research settings. People with SCD often suffer from severe pain episodes, chronic fatigue, swelling, infections, and potential organ damage, significantly impacting their quality of life. 'This study explicitly developed and validated the ISSSI. 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,' said the article. It added that 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 ISSSI will be available to the mission and researchers immediately,'' said the article. Meanwhile, the study was conducted across six SCD-endemic districts in India -- Alluri Seetharama Raju in Andhra Pradesh, Anuppur in Madhya Pradesh, Chhoteudepur in Gujarat, Kandhamal in Odisha, Mysuru in Karnataka, and Udalguri in Assam state. These sites were selected to capture a wide range of socio-cultural and geographical contexts. Each district presents unique demographic and socioeconomic characteristics, including variations in access to healthcare and awareness of SCD. Sickle cell disease is caused by the inheritance of two mutated β-globin genes, one from each parent, leading to the production of abnormal haemoglobin, known as sickle haemoglobin. SCD is a significant public health problem in many regions, impacting populations in several countries. The new scales for India measures multidimensional aspects of stigma, including familial and reproductive, social disclosure, illness burden, interpersonal, and healthcare interaction challenges. The development of the ISSSI represents a significant advancement in understanding and addressing the multifaceted impact of SCD, including stigma. India has now announced the national sickle cell anaemia elimination mission to eliminate SCD as a public health problem, implementing various SCD management interventions and assessing their impact is inevitable. In India, SCD represents a pressing public health concern, particularly within tribal communities, in which the prevalence is considerably high when compared with the general population. Limited healthcare access, socioeconomic challenges, widespread misconceptions, and inadequate knowledge about the disease compound the burden of SCD in India.
