Sickle Cell in Schools: Work in Nigeria
Sickle cell disease (SCD) is an inherited multi-system disorder that affects millions of people worldwide (Serjeant and Serjeant, 2001). As many as 400,000 children with SCD may be born globally each year (Dennis-Antwi et al, 2008). Of these, over 80% are born in Africa, mainly in West and Central Africa (Modell and Darlison, 2008). The World Health Organization states that “in Nigeria, by far the most populous country in the subregion, 24% of the population are carriers of the mutant gene and the prevalence of sickle-cell anaemia is about 20 per 1000 births. This means that in Nigeria alone, about 150 000 children are born annually with sickle-cell anaemia” (WHO: 2006¶3). This makes sickle cell disease an important, but relatively neglected public health issues in West and Central Africa. Grosse et al (2011) suggest that since SCD might be responsible for 5-16% of under-5 mortality in parts of sub-Saharan Africa that “greater attention to reducing mortality from SCD could help some African governments to achieve their targets with regard to Millennium Development Goal (MDG) number 4: to reduce their under-5 mortality rates by two-thirds during 1990-2015” (Grosse et al, 2011: S404).
In the UK work at DMU has examined the lack of care for young people with SCD at school (Dyson et al, 2010a, 2010b, 2011). This has resulted in the publication of a Guide to School Policy on Sickle Cell. The guide is aimed not primarily at classroom teachers (though they would be very welcome to read it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of year; school nurses; heads of school nursing; local authority school advisors; school governors. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD). This guide has been adopted by the UK Department for Education and placed on their web-site. It has been adopted by several UK sickle cell NGOs. Using HEIF funds, and working with colleagues from the three major linguistic regions of Nigeria (Yoruba in SW, Igbo in SE and Hausa in the North) the guide has been adapted to the situation in Nigeria and translated into Yoruba, Hausa and Igbo. As more and more young people living with sickle cell disease in Nigeria grow up to become adults, it is hoped that this guide will help them to achieve the best they can at school in order to best prepare them for adult life.
Dennis-Antwi, J.A., Dyson, S.M. and Ohene-Frempong, K. (2008) Healthcare provision for sickle cell disease in Ghana: challenges for the African context. Diversity in Health and Social Care. 5 (4), 241-254.
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044.
Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142.
Grosse, SD; Odame, I; Atrash, H; Amendah, DD; Piel, FB and Williams, TN (2011) Sickle cell disease in Africa: a neglected cause of childhood mortality American Journal of Preventive Medicine 41(6) S4: 398-405.
Modell, B. and Darlison, M. (2008) Global epidemiology of haemoglobin disorders and derived service indicators. Bulletin of the World Health Organization. 86 (6), 417-496.
World Health Organization (2006) Sickle Cell Anaemia Report of the 59th World Health Assembly Available: http://apps.who.int/gb/ebwha/pdf_files/WHA59/A59_9-en.pdf [accessed 8th December 2011]
The Guide to School Policy that is to be adapted and translated into Yoruba, Hausa and Igbo