Barriers to Early Diagnosis and Healthcare Access among Tribal Communities Affected by Sickle Cell Disease in Chhattisgarh: Implications for Community-Based Outreach Programs

9 Sep

Authors: Dr. Shahla Khan, Dr. P. K. Patra, Dr. Ashish Patel

Abstract: Background: Sickle Cell Disease (SCD) remains highly prevalent among tribal populations in central India. This study evaluated barriers to early diagnosis and healthcare access in selected tribal districts of Chhattisgarh using structured interviews. Methods: A community-based cross-sectional observational study included 500 participants with confirmed SCD or caregivers of affected individuals from Mahasamund, Kanker, Jashpur, and Bastar districts. Information on awareness, healthcare utilization, diagnostic delay, and barriers to care was collected using a structured interviewer-administered questionnaire and analysed using descriptive statistics. Results: The principal barriers to healthcare access were long distance to health facilities (41.6%), financial constraints (35.2%), transportation problems (31.8%), lack of specialist services (29.6%), lack of awareness (27.4%), and language/cultural barriers (19.2%). Diagnostic delay was 1–3 years in 36.8% of participants, 3–5 years in 28.4%, and more than 5 years in 15.6%; the reported mean diagnostic delay was 3.2 ± 1.8 years. Only 38.2% reported regular follow-up visits, while 45.6% reported missed appointments due to financial reasons. Conclusion: Community-based outreach, decentralized diagnostic services, strengthened referral systems, frontline health-worker engagement, and improved financial and transportation support are important to improve equitable SCD care in tribal regions of Chhattisgarh.

DOI: https://doi.org/10.5281/zenodo.22684429