Socio-Economic Impacts of Childhood Sickle Cell Disease on Households in Lubumbashi: An Exploratory Mixed-Methods Study.

Introduction: Sickle cell disease is a common genetic disorder in Africa, particularly In the Democratic Republic of Congo (DRC), sickle cell disease causes anemia, pain, and complications in young children. It places a heavy burden on families, both medically and economically, especially in the absence of support or health insurance. This study examines how this disease affects the daily lives of households in Lubumbashi. Methods: This mixed-methods study combined quantitative and qualitative approaches to explore the impact of sickle cell disease on households with children in Lubumbashi. It included 70 children aged 0 to 15 years and their families, with data collected from hospital records and in-depth semi-structured interviews. The data were analyzed using descriptive statistics for the quantitative component and thematic analysis for the qualitative component, thus integrating statistics and personal accounts for a comprehensive understanding of family life. Results: The study showed that children with sickle cell disease, mostly aged 0 to 5 years, experience frequent painful crises that disrupt their daily lives and those of their families. Treatment, often symptomatic and costly, leads to repeated hospitalizations, stress, and income loss for parents. The disease also affects children's schooling and social lives, with learning difficulties and frequent stigmatization. Limited access to hydroxyurea and regular follow-up care exacerbates the vulnerability of families. They express an urgent need for financial, psychological, and educational support, as well as improved access to treatments and healthcare facilities. Conclusion: Sickle cell disease profoundly disrupts the lives of children and their families, causing painful crises, hospitalizations, and academic and financial difficulties. Early screening, access to hydroxyurea, prophylaxis, and specialized clinics, combined with educational and psychosocial support, could improve their daily lives. Solidarity-based financing mechanisms or targeted subsidies are essential to alleviate the economic burden on families.