Promoting Resilience in Tribal Communities by Education and Raising Awareness Among New Mothers and Adolescents for Sickle Cell Disease

Madhya Pradesh bears the highest burden of sickle cell disease (SCD) in India, with four tribal districts—Alirajpur, Anuppur, Chhindwara, and Dindori—accounting for approximately 75% of the existing cases [1]. Sickle cell disease is a genetic blood disease that affects the whole life of an affected patient. Since there is no cure for sickle cell disease, prevention, and holistic care are the mainstay of the sickle cell disease elimination mission. PRERNA - Promoting Resilience in tribal communities by Education and Raising Awareness among New Mothers and Adolescents for Sickle Cell Disease campaign is all about strengthening tribal communities to improve their health and their children’s health through health promotion- education and raising awareness for increasing early detection, genetic counselling, removing stigma, and rapid preventive intervention for management of sickle cell anemia in new mothers, infants, and adolescents. The PRERNA campaign is integrated into the four strategic pillars of “Engage – Educate – Prevent – Build” (EEPB) through systematic dissemination of Social and Behavioural Change Communication (SBCC) strategies to reach the target population. The campaign involves Information, Education, Communication (IEC) and Behaviour Change Communication (BCC) tools, local influencers like tribal heads, teachers, sarpanch and traditional healers, etc., and art and folk forms like Drama, Nukkad Natak, Puppet shows, storytelling for communication dissemination at grass-root level. Social media is another area where we will execute our mass awareness campaign with relative cost-effectiveness. The strategies aim to increase community adaptation by promoting awareness and education of genetics and inheritance for early screening, genetic counseling and management of disease, and spreading the key message that SCD is preventable. The mission of eliminating Sickle Cell Disease can become a reality only when there is public participation, Jan Bhagidari! It is expected that once education and awareness for prevention and management of the disease are translated into practice, this will improve the quality of life, reduce complications, and increase the life expectancy of patients with Sickle Cell Disease. It will also prevent further prevalence of the disease.