Abstract

Background: Sickle cell anemia (SCA) remains a major public health concern in high-risk and tribal populations in India, yet awareness and psychological support remain limited. This study aimed to explore both the level of awareness and the psychological burden experienced by individuals with lived experience, caregivers, and tribal residents. Methods: A qualitative design was used, treating survey responses from 35 participants as in-depth interview data. Thematic analysis was conducted to identify key themes related to awareness, emotional impact, and communitybased solutions. Participants included healthcare workers, caregivers, patients, and individuals from tribal communities. Results: Findings revealed substantial knowledge gaps: 20% of participants reported no awareness of SCA, 45.7% had basic knowledge, 20% moderate, and only 8.6% showed expert-level understanding. Participants strongly favored community-driven awareness approaches, including school-based programs (40%), tribal screening camps (30%), and targeted media campaigns (20%). The psychological toll was evident 60% reported stress, 40% anxiety, and 48.6% irritability. Individuals with caregiving or lived experience reported heightened frustration and emotional burden. Tribal participants highlighted cultural misconceptions and poor access to care. A key pattern emerged: those with lower awareness levels experienced significantly greater psychological distress. Conclusion: There is a clear need for integrated, culturally sensitive strategies that combine SCA education with accessible mental health support. Strengthening collaborative care models through local outreach, school programs, and psychosocial counseling may reduce knowledge deficits and emotional distress among high-risk populations. Author’

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