Sickle cell disease - a guide for schools by Simon Dyson
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A free guide for schools to support children with sickle cell disease. Written by Prof. Simon Dyson at De Montfort University, UK, and now translated into Nigerian and Brazilian languages. For more OPEN EDUCATIONAL RESOURCES on sickle cell visit http://www.sicklecellanaemia.org
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Sickle cell disease - a guide for schools by Simon Dyson
- 1. SICKLE CELL IN SCHOOLS: A Guide to School Policy Simon Dyson Professor of Applied Sociology De Montfort University, UK BARKA!
- 2. Project Funded by ESRC (Economic and Social Research Council) RES-000-23-1486.
- 3. Introduction • Here is a quick overview of how we devised a guide to school policy for young people with sickle cell disease. • With newborn screening for sickle cell, the majority of young people with sickle cell disease can live to school age and into adulthood. Our concern was that the gains made by newborn screening might be lost if young people with sickle cell disease did not get the right support at school.
- 4. The Research In the project, 569 young people with sickle cell disease aged 4-25 years shared their school experiences.
- 5. Absences from School • 17 days each school year on average • Absences typically in blocks of 2, 3 or 5 days • Reported that they were not helped that much to catch up lessons missed.
- 6. Reported Experiences in Schools Number of children questioned 350 300 250 200 150 100 50 0 57% Not Allowed Toilet 46% 36% Not Allowed Drink 34% Unsuitable Exercise Called Lazy When Tired
- 7. Raising Teacher Awareness Is Not Enough! • Even where teachers were given information about sickle cell disease this did not overall improve support to young people with SCD. • Young people with sickle cell disease did not like anything that marked them out as different. They wanted to be like their peers.
- 8. Policy From this project we have made a guide for schools. It has been translated into several languages including Nigerian. It is an open education resources – licensed by Creative Commons – meaning anyone can adapt and use it without charge.
- 9. Nigeria Versions • Reviewed by Bola Ojo, Naomi Maiguwa, Jonah Lah, Dr Baba Inusa, Comfort Okolo and Elizabeth Anionwu. • Inserted good practice examples from Nigerian schools (e.g. on malarial environmental clear-ups and on building schools on one level) • Translated into Hausa, Yoruba and Igbo
- 11. Contact Details Simon Dyson De Montfort University Leicester LE1 9BH UNITED KINGDOM +44 116 257 7751 sdyson@dmu.ac.uk http://www.sicklecelleducation.com Sickle Cell Cohort Research (SCORE) 19 Nouakchott Street Off Olusegun Obasanjo Way Kogoma Street Abuja http://www.score-international.org/
- 12. More Open Educational Materials Visit http://www.sicklecellanaemia.org
Editor's Notes
- BARKA! My name is Simon Dyson. I am a Professor of Applied Sociology at De Montfort University in the UK. I want to share with you how we devised a guide to school policy for young people with sickle cell disease. With newborn screening for sickle cell, the majority of young people with sickle cell disease can live to school age and indeed into adulthood. Our concern was that the gains made by newborn screening might be lost if young people with sickle cell disease did not get the right support at school.
- Our research was funded by a government research council in the UK, the Economic and Social Research Council
- The research looked at the experiences of 569 young people with sickle cell disease and has been published in peer reviewed journals.
- It is vital that young people with sickle cell disease are given the opportunity to have the best education they can. However, our research found that they missed a great deal of time from school and that the young people with sickle cell disease felt that they were not helped to catch up the lessons that they had missed.
- Young people with SCD cannot concentrate urine as readily and need to pass large quantities of dilute urine, so requiring to go to the toilet more frequently. But 57 % said that their teacher had prevented this. The strong advice of doctors is for people with SCD to keep well hydrated and drink plenty of water but again, nearly half the young people said that their teacher had stopped them from drinking water in class. Young people with SCD need to take exercise to remain healthy as we all do, but strenuous exercise to exhaustion is not good for someone with SCD. Yet over a third of young people with SCD said they had been forced to undertake unsuitable exercise at school. Finally, the main type of SCD is called sickle cell anaemia. The clue is in the name. People with anaemia will be tired, lethargic and find it difficult to concentrate. Unfortunately over a third said that they had been accused by their teacher of being lazy when in fact they were tired from their anaemia.
- Perhaps surprisingly, our research also found that simply giving teachers information about SCD was necessary but not sufficient to ensure good support for young people with SCD at school. We also found that young people with SCD did not like support that drew attention to them as different from their peers. They wanted to blend in with their classmates. We therefore needed an approach that recognised these factors.
- We found that the most effective actions were to introduce strong school policies that supported the young person with SCD, but without drawing attention to them as different from others. For example, one school had an evening catch-up session with a teacher present so that any child who missed school for any reason was enabled to catch up. The young person with sickle cell was helped to make up the schoolwork they had missed but was not made to feel different from their peers. Other examples of good practice are included in the Guide to School Policy and are highlighted in green. The guide has been produced as an open education document. This means it is intended to be adapted and used by others without charge.
- The guide has been adapted to the Nigerian context by Nigerian education experts, community workers, doctors and nurse counsellors. On the basis of experiences in Nigeria, new sections on environmental clean-ups to reduce malaria; on ensuring school buildings are built on one level, and on the benefits of peer-to-peer support programmes in schools have been added. It has been translated into Hausa, Yoruba and Igbo by professional translation services.
- We are therefore very pleased to be able to present to you today the Hausa version of the Guide to School Policy.
- Downloadable copies of the guides in Hausa, Yoruba and Igbo, as well as the English-language Nigerian version, are available from the SCORE website. Further details of the research underpinning the guide is available at www.sicklecelleducation.com Thank you for listening.
- Downloadable copies of the guides in Hausa, Yoruba and Igbo, as well as the English-language Nigerian version, are available from the SCORE website. Further details of the research underpinning the guide is available at www.sicklecelleducation.com Thank you for listening.