Category Archives: Social Sciences

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]

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]

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]

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Educational experiences of young people with sickle cell disease 6


Image: Professor Simon Dyson Lecture 6 on Educational Experiences of Young People
Creative Commons BY SA.

Author:       Professor Simon Dyson

Level:          Undergrad. social sciences & healthcare; postgrad. education & healthcare professionals.

OER Series of 6 Lectures:

Lecture 1
Lecture 2
Lecture 3
Lecture 4
Lecture 5
Lecture 6


OER Features:

SCOOTEROER35d_SCED6_Webinar (PDF of presentation slides)

Click here to view as a narrated Powerpoint presentation
(will open the resource in a new browser window)

OER Description:

The school experiences of young people with sickle cell and thalassaemia are not well understood in the UK and ill-researched. In this final presentation Professor Dyson provides an overview of the project team and details, demographics of those participants in the research, and an insight into the impact that sickle cell has on schooling and experiences of young people.

The outputs of his research can be found in a number of lectures and publications. Six lectures can be found on this site available as narrated presentations, slide copies and as podcasts.

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