More details to the background of the work in Sierra Leone can be found on a second blog post here. The SCOOTER project would like to reflect here our thanks to all of those mentioned in the guide who helped produced this vital adaptation.
We would like to thank the following for their work in producing this adaptation of the Guide to School Policy:
Parents, caregivers and young people with sickle cell, Sierra Leone Sickle Cell Disease Society Amelia Eva Gabba, Sierra Leone Sickle Cell Disease Society Tamba P. Kellie, Sierra Leone Grammar School Benson A. Sesay, Freetown Secondary School for Girls
Samuel O. Macauley, Milton Margai College of Education and Technology Samuel I. Bangura, Helen Keller International, Freetown Osman Kamara, Helen Keller International, Freetown Annie Sesay, Sierra Leone Sickle Cell Disease Society
Cassandra Leigh, Sierra Leone Sickle Cell Disease Society Iyamide Thomas, GT Consultancy and UK Sickle Cell Society Maria Berghs, De Montfort University, UK Students and staff at Sierra Leone Grammar School, Freetown Secondary School for Girls, and the Methodist Girls High School
The most popular resource by far on this website is Professor Dyson’s ‘Guide for Schools’, and this page provides an updated version of this. Details of the earlier version can be found here – http://sicklecellanaemia.org/teaching-resources/resources/scooter24-29/scooter25.html – and this resource has been translated into several other languages.
The reason for this second edition is change to UK law with the introduction of the Children and Families Act of 2014. This requires schools to make provision for young people with conditions such as sickle cell disease, and the guide further supports this.
We hope this guide is useful and it continues to lead improvements in the way that young people with SCD are integrated into school.
TRADUÇÃO
Coordenação:
Kelen Cristina Sant’Anna de Lima – Nupad/FM/UFMG e LETRA/FALE/UFMG Igor Antônio Lourenço da Silva – ILEEL/UFU
Tradutores:
Gilberto Zulato – Nupad/FM/UFMG
Julia Rodrigues – LETRA/FALE/UFMG
Juliana Maria Gonçalves da Silva – LETRA/FALE/UFMG
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.
Minas Gerais State
The State of Minas Gerais in Brazil.
CC-BY-2.5 Raphael Lorentzo de Abeu
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
This version of the popular ‘Guide to School Policy‘ has been translated into Nigerian English to benefit wider groups of teachers and policy makers supporting school children with sickle cell anaemia and thalassaemia. The following people were involved in this new version of the school policy guide, and we would like to thank them for their contribution:
• Bola Ojo,
• Naomi Maiguwa, • Jonah Lah
• Dr Baba Inusa
• Comfort Okolo
• Elizabeth Anionwu
We would like to thank the following for their critical appraisal of the original UK draft of this policy guide:
• Professor Elizabeth Anionwu, CBE, Emeritus Professor of Nursing, University of West London. • Suzi Crawford, Specialist Nurse Counsellor, Soho Health Centre, Birmingham.
• Dr Paul Telfer, Senior Lecturer in Haematology at Queen Mary, University of London , and Honorary Consultant Haematologist at St Bartholomew’s and The Royal London NHS Trusts.
This version of the popular ‘Guide to School Policy‘ has been translated into Yoruba to benefit wider groups of teachers and policy makers supporting school children with sickle cell anaemia and thalassaemia. The following people were involved in this new version of the school policy guide, and we would like to thank them for their contribution:
• Bola Ojo,
• Naomi Maiguwa
• Jonah Lah
• Dr Baba Inusa
• Comfort Okol
• Elizabeth Anionwu
Muna son miƙa godiya ga waɗannan don rubuta ire‐iren manufar ta jagorar makaranta wanda ta shafi Najeriya:
• Bola Ojo, • Naomi Maiguwa • Jonah Lah • Dakta Baba Inusa • Comfort Okolo • Elizabeth Anionwu
We would like to thank the following for their critical appraisal of the original UK draft of this policy guide:
• Professor Elizabeth Anionwu, CBE, Emeritus Professor of Nursing, University of West London. • Suzi Crawford, Specialist Nurse Counsellor, Soho Health Centre, Birmingham.
• Dr Paul Telfer, Senior Lecturer in Haematology at Queen Mary, University of London , and Honorary Consultant Haematologist at St Bartholomew’s and The Royal London NHS Trusts.
