Sickle Cell in Schools: Work in Minas Gerais, Brazil

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Portuguese translation of the ‘schools guide’

Content Author:
Professor Simon Dyson

With thanks:

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

OER Features:

Portuguese Schools Guide

Word Document: Portuguese Language Version_Nov 2014_Doc

PDF: Portuguese Language Version_Nov14 PDF

OER Details:

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.

Portuguese Schools Guide

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
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

 

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; 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

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 59th World Health Assembly Available: http://apps.who.int/gb/ebwha/pdf_files/WHA59/A59_9-en.pdf [accessed 8th December 2011]

Guide for schools

The Guide to School Policy that is to be adapted and translated into Yoruba, Hausa and Igbo

Sickle cell ‘Schools Guide’ Hausa translation

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Hausa Translation

Content Author:
Professor Simon Dyson

Level:
Healthcare professionals, school professionals, policy makers

OER Features:
Schools Guide translation into Nigerian English

Word Document – SCOOTER91a_School_Policy_Hausa

PDF File – SCOOTER91b_School_Policy_Hausa

OER Description:

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.

Sickle cell ‘Schools Guide’ Igbo translation

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Igbo Translation

Content Author:
Professor Simon Dyson

Level:
Healthcare professionals, school professionals, policy makers

OER Features:
Schools Guide translation into Nigerian English
Word Document – SCOOTER90a_School_Policy_Igbo

PDF File – SCOOTER90b_School_Policy_Igbo

OER Description:

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

Ọ ga-amasị anyị ịkele ndị a maka ịmepụta amụma ntụziaka nke ụlọ akwụkwọ nke ụdị Naịjirịa:

• 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.

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