Sickle cell disease is a major public health issue in sub-Saharan Africa, with Nigeria having the largest absolute numbers of young people living with sickle cell disease. Research in the Global North suggests that young people with sickle cell disease are not well supported at school, whilst research in the Global South focuses on attitudes to the identification of genetic carriers to prevent births of children with sickle cell disease, rather than support of those with the sickle cell disease condition itself. Between 2015 and 2017 a randomized controlled trial based on one hour education session for school teachers, based on information contained in a guide to school policy on sickle cell disease, was conducted with 402 young people with sickle cell disease across 314 schools in Lagos State, Nigeria. Young people with sickle cell disease in both intervention group and control groups showed significant decreases in the number of days of school absence and in self-reported indicators of lack of support, and significant increases in self-reported indicators of school support. The results suggest a breakdown of the randomization, probably because the young people with sickle cell disease all reacted positively to researchers taking an interest in their welfare in a context where they would usually be heavily stigmatized and would be inclined to hide their sickle cell disease status from others at school. In conclusion, conditions conducive to conducting successful research on sickle cell disease in this context - increased self-esteem in young people with sickle cell disease, reduction in within-school stigmatizing attitudes, and commitment by policy makers to improve the situation of young people in schools – are the very factors that would improve the experiences of young people living with sickle cell disease at school in Lagos, Nigeria. The fact that positive changes did occur warrants further research on this topic.
Barriers experienced in self-care practice by young people with sickle cell disease
