Sickle cell disease-related myths and misconceptions among tribal communities in India: a multi-state qualitative study.

Authors

Yogita Sharma, Parikipandla Sridevi, Jatin Sarmah, Godi Sudhakar, Manoranjan Ranjit, Shaily B Surti, Deepa Bhat, Madhusmita Bal, Rabindra K Jena, Bontha V Babu

Published in

Journal of community genetics. Volume 17. Issue 4. Jul 04, 2026. Epub Jul 04, 2026.

Abstract

Myths and misconceptions surrounding sickle cell disease (SCD) can shape stigma and influence the treatment and interaction with healthcare services. In India, where SCD disproportionately affects tribal populations, limited evidence exists on myths and misconceptions across endemic regions. This study explored culturally embedded myths and misconceptions related to SCD among tribal communities in India and examined their implications for stigma and healthcare-seeking behaviour. A qualitative descriptive study was conducted across nine SCD-endemic tribal districts in India. Data, collected through in-depth interviews with key informants and focus group discussions with community members, were analysed using thematic content analysis. Themes were organised around domains of causation, transmission, heredity, prognosis and treatment. The study identified diverse SCD-related beliefs, myths and misconceptions across the study sites. These were organised around domains and grouped into four broad categories: locally rooted explanatory beliefs, including supernatural, spiritual, dietary and lifestyle-related explanations; misconceptions arising from incomplete biomedical understanding, particularly regarding contagion, heredity and consanguineous marriage; distorted interpretations of medical or programme-related messages, especially around marriage, reproduction and long-term treatment; and social consequences related to stigma, fatalism, perceived productivity and economic burden. These categories overlapped across sites, with some beliefs being locally specific and others commonly reported across tribal settings. SCD-related myths and misconceptions in tribal India are socially embedded and extend beyond simple informational gaps. Culturally responsive communication and counselling approaches that acknowledge local explanatory frameworks, while strengthening accurate understanding of inheritance, treatment and long-term care, are needed within SCD care programmes in endemic regions.

PMID:
42399606
Bibliographic data and abstract were imported from PubMed on 04 Jul 2026.

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