Background: Sickle cell disease (SCD) is a public health problem. In absence of a pan-country intervention program in India, SCD prevalence is ascending without control. Since knowledge and perception of a community is a prerequisite for developing an intervention strategy, the current study was designed to assess it in a high SCD burden tribal-dominated district of Odisha.
Methods: A mixed-method study combining qualitative and quantitative methods was conducted in the Kandhamal district, Odisha, India. A cross-sectional survey was conducted among randomly selected 1600 individuals, using a pre-tested questionnaire and 26 in-depth interviews were conducted with key informants.
Results: Although 74.2% of the participants in the studied area had heard about the disease, only 13.6% know the cause of the disease. 69% had the knowledge to opt for modern medication. However, treatment compliance was poor, patients resort to using medications only during the crisis stage. Individuals who had knowledge about disease aetiology got to know about SCD from lived experiences of themselves, close relatives, or villagers and rarely from health workers. The community members had no clarity regarding which health centre to be approached for routine medication and management of SCD crisis.
Conclusion: The area is endemic for SCD, yet, the community lacks knowledge about the cause and treatment modality of the disease. In addition, currently there is no government-run intervention programme for screening and management of SCD related morbidity. Hence, a community based intervention strategy needs to be implemented urgently for enhancing the knowledge, perception, and aptitude related to SCD.
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