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Sierra Leonean approach to sickle cell in schools

Sickle Cell in Schools: Work in Freetown, Sierra Leone, West Africa

A guide to school policy for Sierra Leone has just been released.

In the UK researchers at De Montfort University have examined the lack of care for young people with sickle cell disorder (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 make use of 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 school year or those responsible for pastoral care in school; school nurses; heads of school nursing; local authority school advisors; school governors, or ministry of education officials. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD).

Working with a Newton Fund grant, early career research fellow at De Montfort University Dr Maria Berghs has collaborated with the Sierra Leone Sickle Cell Society led by Dr George Tregson-Roberts and Amelia Gabba, together with colleagues in Helen Keller International and schools in the Sierra Leonean capital, Freetown, to adapt the guide to the context in Sierra Leone.

In Sierra Leone, children are legally required to attend six years of primary school and three years of junior secondary school until they are 15 years old. This consists of the basic education that each citizen is entitled to have according to the 2004 Education Act. The 2004 Education Act stipulates that there should be no discrimination which could prevent a child in attaining this basic education. The 2007 Child’s Rights Act also states that children are entitled to basic education. An important part of school inclusiveness is recognising the importance of offering care to young people with long standing illness, particularly since a major part of childhood is spent in attending school. The duty on ensuring inclusiveness in school falls to the school authorities who must make arrangements for supporting pupils at school with medical conditions. Pupils with sickle cell disorder fall under this legislation and guidance. In a resource-poor, post-conflict, and post-Ebola country, like Sierra Leone, there are additional constraints facing children living with serious health conditions accessing not only school but also health services. The country’s educational sector was badly affected by a ten year civil war (1991-2002) and the world’s most serious Ebola epidemic (2014-2016). The educational sector is rebuilding but there is a dire shortage of teachers and school facilities. When we think of inclusiveness, the 2006 United Nations Convention on the Rights for Persons with Disabilities is also applicable and school authorities are responsible for ensuring inclusion of a child with health condition who may further have acquired or been born with an impairment. We therefore hope that this new guide to school policy for sickle cell will help all schools in Sierra Leone to better support young people with sickle cell at school.

Guide to school policy in Sierra Leone — CC-BY-SA Sierra Leone Sickle Cell Society et al

The Guide to School Policy that has been adapted by the Sierra Leone Sickle Cell Society and colleagues in Freetown, Sierra Leone

References

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 [ISSN: 0141-9889] http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01301.x/full

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010a) 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. [ISSN: 0277-9536] http://dx.doi.org/10.1016/j.socscimed.2010.03.010

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010b) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] http://dx.doi.org/10.1080/01411920902878941

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Version 2 of the Guide to school policy – blog post

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Sickle Cell: A Guide to School Policy Second Edition

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To mark the United Nations International Sickle Cell Day on June 19^th, we are pleased to announce the launch of a second edition of the popular Guide to School Policy for Sickle Cell. Sickle cell disease (SCD) is one of the most common genetic conditions in the world, and affects 1 in every 2,000 children born in England (1 in every 600 in London). And yet many people have still to even hear about the condition, and even where it is known about, it is a condition that is widely misunderstood, and not given the recognition it deserves.

The initial guide was developed on the basis of research evidence from a project funded by the Economic and Social Research Council and led by Simon Dyson of De Montfort University. The research findings were published in the journal Social Science and Medicine and suggested that raising teacher awareness of sickle cell disease (SCD) was, by itself, insufficient to lead to good support for students with sickle cell whilst they are at school. What was required was the implementation of policy that created strong support structures in the background, without drawing attention to young people with SCD as different from their peers, something the young people themselves intensely disliked. Since the first edition of the guide was launched in England in 2011, it has been adapted and translated into Yoruba, Hausa and Igbo for use in Nigeria, and into Portuguese for use in Brazil. It has even been credited with influencing the prestigious Centers for Disease Control and Prevention in the USA to develop their guide to supporting pupils with sickle cell disease at school in the USA.

One reason for the development of a second edition is the introduction, in the UK, of the Children and Families Act of 2014. Section 100 of this act places a particular duty on governing bodies to makes provision for pupils with medical conditions such as SCD disease, and requires pupils to have education, health and care plans, something for which there was already a model in the first edition of the guide.

The guide has already proved its worth and in May 2016 a BBC Radio 4 Appeal by Malorie Blackman on behalf of the Sickle Cell Society specifically mentions the case of a mother Jacqueline who was concerned about the treatment of her son with SCD Joseph at school, and who used the guide to school policy to advocate on behalf of her son to the teachers at school. We hope that head teachers and school governors find the guide useful, and that it leads to continuing improvements in the way that young people with SCD are integrated into school.

Sickle Cell – Guides for schools in Nigeria

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.

References

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; 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 59^th 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

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