Tag Archives: Guide for schools

Supporting Young People with Sickle Cell and Thalassaemia in School

open educational resources – social sciences

 Guide for Schools Cover

Images: Education and Health Guide by Professor Simon Dyson
CC BY-SA 4.0

Main Content Author:

Professor Simon Dyson


Undergraduate social sciences and healthcare; postgraduate education and healthcare professionals.

OER Features (2 components):

SCOOTEROER112b_Simon Dyson Guide for Schools_V2_June 2016 (PDF)

SCOOTEROER112a_Simon Dyson Guide for Schools_V2_June 2016 (Editable Word Document)


OER Description:

We are delighted to share an updated version of the very popular guide for schools. This guide to policy, background information and useful checklists, provides essential guidance for teachers and tutors on how to support children with sickle cell and thalassaemia in their studies. This version 2 is an update to a previous document shared in February 2011.

Subsequently, this version was translated into Portuguese and Nigerian dialects, and you can browse this collection of resources, and the research associated with it, on our search page.

All of these resources are available for you to use in your own school or college. They are licensed for re-use and sharing under a Creative Commons License. All we ask is that you fully attribute Professor Dyson and this website, and should you wish to share your work back, do contact the project director Dr Vivien Rolfe by Twitter. @vivienrolfe.

Here is how you attribute the work (like providing a citation or acknowledgement).

Creative Commons License
School Policy for Sickle Cell and Thalassaemia by Professor Simon Dyson is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.



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Sickle Guide for Schools – Portuguese Translation

Sickle Cell in Schools: Work in Minas Gerais, Brazil

DOWNLOAD –> Portuguese Language Version_FINAL_Nov 2014-2 (PDF)
REMIX / EDIT –> Portuguese Language Version_FINAL_Nov 2014 (Word doc)

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).

This guide has previously been adopted by several UK sickle cell NGOs. It has now been adapted by colleagues working in the state of Minas Gerais in Brazil. Working with colleagues from CEHMOB MG (a multi-disciplinary organization working on sickle cell) and NUPAD  part of the medical school at the Federal University of Minas Gerais (UFMG) in Belo Horizonte, Kelen Sant’Anna de Lima, a post-doctoral researcher in socio-linguistics at UFMG, has co-ordinated a team of experts in sickle cell, cultural adaptation and translation to produce a Portuguese language version of the guide.  As more and more young people living with sickle cell disease in Brazil 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.

The Guide was launched at the Second World Congress on Sickle Cell, which took place 11-th-14th November 2014 in Rio de Janeiro. At a special workshop delegates heard from Isabel Castro (CEHMOB MG); Kelen Santa’Anna de Lima (NUPAD); Maria Zeno Soares (FENAFAL, the Federation of Brazilian NGOs for sickle cell) Simon Dyson (De Montfort University) and from the special guest of honour Ilma Fátima de Jesus from the Brazilian Ministry of Education.


The Guide to School Policy that has been adapted and translated into Portuguese by the team at the CEHMOB MG and the Federal University of Minas Gerais.

CC-BY-SA Kelen Santa’Anna de Lima et al

CC-BY-SA Kelen Santa’Anna de Lima et al

The State of Minas Gerais in Brazil.

CC-BY-2.5 Raphael Lorentzo de Abeu 

CC-BY-2.5 Raphael Lorentzo de Abeu



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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Sickle Cell Guide for Schools – Yoruba Translation

open educational resources – social sciences

Sickle cell guide for schools Yoruba translation

 Image: School Health and Safety Guide by Professor Simon Dyson
Creative Commons BY SA.



Professor Simon Dyson


Undergraduate social sciences and healthcare, postgraduate education and healthcare professionals.

OER Features:

Professor Dyson’s Guide for Schools translated into Nigerian Yoruba.

SCOOTEROER25b_School Policy_Sickle Cell and Thalassaemia_V1 (English Version)

Editable Nigerian Yoruba Version of School’s Guide (Word Document).

Ready to use Yoruba Translation (PDF).

OER Description:

This booklet has been produced based on research examining the experiences of young people with sickle cell disease in schools. It is a translation into Nigerian YORUBA language based on a previously published version (Guide for Schools). 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 Nigerian School Health Policy of November 2006 calls for adequate resources and programmes that promote the physical, mental, safety and social well being of all categories of school children generally

This guide was a result of a project funded by the UK Economic & Social Research Council and conducted between De Montfort University, and universities of York and Loughborough.

We would like to thank the following for developing the Nigerian versions of the school policy guide:

Bola Ojo, Naomi Maiguwa, Jonah Lah, Dr Baba Inusa, Comfort Okolo and Professor Elizabeth Anionwu.

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