Abstract
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Background: Due to the chronic nature of sickle cell disease (SCD), home-based care plays a crucial role in the management of affected children. Nutritional challenges significantly influence many SCD-related complications, including chronic inflammation and vaso-occlusive crises, which are often associated with recurrent pain episodes and an increased risk of stroke, particularly in young children.
Objectives: To evaluate home-based care practices and the nutritional status of under-five children affected by SCD in Raipur, Chhattisgarh, India.
Methodology: A cross-sectional study was conducted between December 2022 and February 2023. Home-based interviews were carried out with parents or caregivers of SCD-affected children using a pre-designed, pre-tested questionnaire.
Results: A total of 93 families with SCD-affected children were included. Respondents comprised mothers (47.3%), fathers (46.2%), and other caregivers or relatives. The majority of respondents (78%) were aware of SCD, while 56% knew that the disease is incurable. The most commonly reported symptom was joint pain (79.1%). To manage pain, 63% of caregivers used warm compressions, 70% used massage, and 73% administered analgesic medications. More than half of the caregivers (56%) restricted outdoor activities, and 64% did not allow children to engage in strenuous physical activities. Approximately 80% of children were receiving medications such as hydroxyurea and nutritional supplements, with 78% reporting perceived benefits. During vaso-occlusive crises, massage (76%) and
hydration (62%) were the most frequently practiced home-based interventions.Nutritional assessment revealed that 21.9% of children were underweight, 12.08% were stunted, and 25.27% were wasted. Among children with calorie intake below the recommended dietary allowance (<1010 kcal), 58.33% had a calorie deficit, and 87.9% of parents expressed willingness to provide additional nutritional supplements. Overall, 65% of caregivers reported providing special nutrition or modified diets for children with SCD.
Conclusion: Massage and hydration were the most commonly practiced home-based care strategies for managing SCD-related complications. A significant proportion of under-five children with SCD were malnourished and did not meet the recommended daily dietary intake. Integrating structured nutritional interventions into home-based care should be emphasized as a standard component of comprehensive management for children with sickle cell disease.
Keywords: Sickle Cell Disease, Hydroxyurea, Home based Care, Children, Nutrition.
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