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• De Montfort University:
– Professor Simon Dyson
– Professor Lorraine Culley
– Dr Sue Dyson
• University of York
– Professor Karl Atkin
• University of Bedfordshire
– Dr Hala Evans
• Aims/objectives
• Learning outcomes
• Background
• Definitions
• Our study: Young people with sickle cell and
education
– What, when, where, why & how
– Mains outcomes
– Implications
• What can we do?
• Conclusion
• Publications and references
• Share knowledge and experience on
sickle cell anaemia and education in
England.
• Explore practical educational policies
to deal with sickle cell.
Definition
Sickle Cell Disorder is a chronic inherited
genetic blood condition in which carriers
have an abnormal type of haemoglobin
(HbS) which affects how the blood is flowing
in the body compared to normal
haemoglobin (HbA) (WHO).
•A new discovery of the 20th century.
•First recorded in 1910 by James Bryan
Herrick, an American cardiologist and a major
figure in the history of medical science (Haller
et al., 2001).
•Herrick’s syndrome until 1922 when
doctor V. Mason named the diseases as
“sickle-cell anaemia” based on the
description of Ernest Irons, a medical doctor
at the Presbyterian Hospital in Chicago.
•In England 1 in every 2000 new birth has
SCD.
• SCD is prevalent in Africa with at least 40
countries in which it varies between 2% and 30%
(WHO, 2011).
• Country such as Cameroon, Republic of Congo,
Gabon, Ghana and Nigeria, the prevalence is
between 20% and 30% while in some parts of
Uganda it is as high as 45% (WHO, 2012).
• Despite the prevalence of the disease, little is
done in these countries due to the governments’
lack of adequate health initiatives (WHO, 2011).
• Target population: Young people at schools
age range from 4 to 25 years.
• Duration: Three years (2006-2009)
• Location: England, UK
• Sponsor: The Economic and Social Research
Council (ESRC) Grant RES-000–23–1486
London
Birmingham
Leicester
• Population
– 63.7 million, has the highest growth in Europe
• Ethnic monitories
– 8% of the overall population
– Majority are Irish
– Black, Asian, and currently Eastern European
• Makeup
– England - Scotland
– Wells - Northern Ireland
• To describe the perceptions held by those living
with SCD in England of their educational
experiences.
• To map the range and frequency of key factors
reported to affect the educational experiences of
those living with SCD.
• To map the extent and content of educational
policies on SCD at local authority and school
level.
• To work towards a suggested educational policy
framework for SCD.
• How do young people living with SCD
experience their school education?
– School education
– Experience with the condition
– Socio-economic and cultural context
• What are the features of the current educational
context that constitute barriers and supportive
mechanisms for young people with SCD?
– Educational system in England
– Barriers
– Supporting services
– Education policies
• What are the numerical parameters within
which young people with SCD are
educated?
– Parameters
– Context
– Content
• What are the range and nature of
educational policies of schools
and local education authorities on
SCD?
–Nature of educational policies
–Range of policies
1. Literature
review
• Preparation
• Review of
secondary sources
2. Quantitative
• 107 education
authorities and
policies
• 569 young people
under 25 about their
educational
experiences
• 200 schools
attended by pupils
with SCD.
3.Qualitative
• 40 depth, tape-
recorded interviews
• 8-10 case studies
with completion of
yearlong
• Diaries and follow-
up interviews.
• Policy development
workshops at
regional seminars
•Gender
•Age
•Place of residence
•Support
•Awareness
•Support
•Stigma
•Labelling
•Policies
•Awareness
•Priority
•Building
•Furniture
•Environment
Schools
Local educational
authorities
StudentsStaff and students
Specifications Percentages
Sex Male 49
Female 51
Age groups 4 16 3
5–10 43
11–18 49
19–25 5
Ethnicity Black African 60
Black Caribbean 29
Black other 8
Other (including not stated) 3
• Disclosure and sickle cell disorder: A
mixed methods study of the young person
with sickle cell at school. Simon Martin
Dyson, Karl Atkin, Lorraine A. Culley, Sue
E. Dyson, Hala Evans and Dave T. Rowley
http://www.youtube.com/watch?v=IIlKuSv7
0EQ
School absentees
• One in eight has school absences.
• No help to catch up with missed studies.
Access during class
• No toilet
• No water
Physical activity
• Force to take unsuitable exercise
• Called lazy when tired
Triggers to pain episodes
• Physical environment (temperature, school furniture)
• Social environment (being upset by teachers or other
pupils)
Policy initiatives
• Preventative measures
• Social attitudes
Lack of inclusion of children with SCD in
schools
IssuesDisclosure
Absentees
Stigma
Discrimination Unpredictable
Treated
normally
Lack of
knowledge
Communication
Attitude to
disclosing SCD to
others (39)
Mother as
advocate in
negotiations with
school (25)
Denied water
during class (19)
Challenges of re-
entry to school
following absence
(13)
School absences
(39)
Concern over lack
of help to catch
up lessons
missed (24)
Made to take
unsuitable
exercise (18)
School physical
infrastructure (13)
In pain at school
(36)
Denied toilet
breaks (21)
Information does
not work (17)
SCD as negative
capital (9)
Concern about
fitting in at school
(30)
Called lazy (21) Being Bullied (16)
Support offered
not matching
need (8)
Discreditable (28)
Affected by
school
temperature (21)
Accounting for
self (16)
School attempts
an innovative
response (8)
School
absentees
Physical
exercise
Use of toilet
Drink water Infection Temperature
Individual
health care
plan
Pain crisis
• Experience of a young student with sickle cell
pain in school
http://www.youtube.com/watch?v=cKgWA4N
6lls
• Nicholas H. and his mother, Bridget, talk about life
with sickle cell disease. Nicholas was diagnosed with
sickle cell disease soon after he was born. He
suffered from hand-feet syndrome as a baby and had
his gallbladder and spleen removed at age 5.
Penicillin, hydroxyurea and other medicines have
helped him and his family manage the illness and the
severe pain crises that can result in hospitalization.
Now 15 and an honour student in school, Nicholas
enjoys "hanging out," listening to music, playing
video games, wrestling and learning Brazilian jujitsu.
http://www.youtube.com/watch?v=iKQmQHh4E2w
Contributing factors
• Infections
• Cold and/or damp
conditions
• Pollution
• Dehydration
• Strenuous exertion
• Stress
• Sudden changes in
temperature
• Alcohol
• Caffeine
• Smoking
Crisis prevention
• keep warm
• Eat healthily
• Take moderate
exercise
• Drink plenty of fluids,
• Seeking medical
advice if you have a
fever
• Avoiding smoking and
alcohol,
• keeping up to date
with medications and
vaccinations
• Avoid stress.
Frameworkforindividual
healthcareplan
•Screening
–Education (informed decisions)
–avoid having children with SCD.
•Education campaigns
–Stereotyping
–Stigma
•Integration
–Schools
–Community
–Society
•Communications between parents, schools and
children with SCD
• Peer group
• Parents/careers
• Teachers
• Community
• Society
Social
• Heat and cold
• Access to water
and toilets
• Exercise
Physical
• Discrimination
• Stigma
• Fear
• Stress
Psychological
• Social determents of health has an
impact on sickle cell sufferers.
• Lack of knowledge and understanding
of SCD among school staff and students.
• Disclosure of SCD is not easy or
straightforward, it depends on the content
and context of the individuals.
• Communication: Miscommunication between
parents/careers, schools and health
professionals.
• Stigma and discrimination against young people
with sickle cell.
• Interventions: Successful interventions should
be holistic and multi-sectoral.
• Policy level: SCD is invisible in education policy
terms as few local authorities are willing to be
involved.
• Abuateya, H; Atkin, K; Culley, LA; Dyson, SE and Dyson, SM (2008) Young People with Sickle Cell
Disorder and Education: A Knowledge Review. Diversity in Health and Social Care 5 (2): PP.123-135.
[ISSN 1743-1913].
• American Anthropological Association, 2. (2011) Do our genes determine our health?. Available at:
www.understandingrace.org/humvar/sickle_01.html- American Anthropological Association, 2011
(Accessed: 01 June 2013).
• Dyson, S. M.; Atkin, K.; Culley, L.A.; Dyson, S. E.; Evans, H. (2011) Sickle cell, habitual dys-positions
and fragile dispositions: young people with sickle cell at school. Sociology of Health & Illness. 33 (3), pp.
465–483. http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01301.x/abstract
• Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2009) Reported school
experiences of young people living with sickle cell disorder in England. British Educational Research
Journal 36(1):125-142.
• Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and
the education of young people with sickle cell disorders (SCD) in England International Studies in
Sociology of Education 18 (1) PP. 47-60.
• 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) PP. 2036-2044.
• Haller, J.O., Berdon, W.E. & Franke H., 2. (2001) 'Sickle cell anemia: The legacy of the patient (walter
clement noel), the interne (ernest irons) and the attending physician (james herrick) and the facts of its
discovery', Pediatric Radiology, 31 (12), pp.889-890.
• NHS Choices, 2. (2012) Sickle cell anaemia. Available at: http://www.nhs.uk/conditions/Sickle-cell-
anaemia/Pages/Introduction.aspx (Accessed: 01 June 2013).
• World Health Organisation, 2. (2012) Sickle cell disease prevention and control. Available at:
http://www.afro.who.int/en/clusters-a-programmes/dpc/non-communicable-diseases-
managementndm/programme-components/sickle-cell-disease.html (Accessed: 30 May 2013).
• World Health Organisation, 2. (2013) Sickle-cell disease and other haemoglobin disorders. Available at:
http://www.who.int/mediacentre/factsheets/fs308/en/ (Accessed: 01June13).
Dr Hala Evans - Sicle Cell Anaemia

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Dr Hala Evans - Sicle Cell Anaemia

  • 1.
  • 2. • De Montfort University: – Professor Simon Dyson – Professor Lorraine Culley – Dr Sue Dyson • University of York – Professor Karl Atkin • University of Bedfordshire – Dr Hala Evans
  • 3. • Aims/objectives • Learning outcomes • Background • Definitions • Our study: Young people with sickle cell and education – What, when, where, why & how – Mains outcomes – Implications • What can we do? • Conclusion • Publications and references
  • 4. • Share knowledge and experience on sickle cell anaemia and education in England. • Explore practical educational policies to deal with sickle cell.
  • 5. Definition Sickle Cell Disorder is a chronic inherited genetic blood condition in which carriers have an abnormal type of haemoglobin (HbS) which affects how the blood is flowing in the body compared to normal haemoglobin (HbA) (WHO).
  • 6. •A new discovery of the 20th century. •First recorded in 1910 by James Bryan Herrick, an American cardiologist and a major figure in the history of medical science (Haller et al., 2001). •Herrick’s syndrome until 1922 when doctor V. Mason named the diseases as “sickle-cell anaemia” based on the description of Ernest Irons, a medical doctor at the Presbyterian Hospital in Chicago. •In England 1 in every 2000 new birth has SCD.
  • 7. • SCD is prevalent in Africa with at least 40 countries in which it varies between 2% and 30% (WHO, 2011). • Country such as Cameroon, Republic of Congo, Gabon, Ghana and Nigeria, the prevalence is between 20% and 30% while in some parts of Uganda it is as high as 45% (WHO, 2012). • Despite the prevalence of the disease, little is done in these countries due to the governments’ lack of adequate health initiatives (WHO, 2011).
  • 8.
  • 9. • Target population: Young people at schools age range from 4 to 25 years. • Duration: Three years (2006-2009) • Location: England, UK • Sponsor: The Economic and Social Research Council (ESRC) Grant RES-000–23–1486
  • 11. • Population – 63.7 million, has the highest growth in Europe • Ethnic monitories – 8% of the overall population – Majority are Irish – Black, Asian, and currently Eastern European • Makeup – England - Scotland – Wells - Northern Ireland
  • 12. • To describe the perceptions held by those living with SCD in England of their educational experiences. • To map the range and frequency of key factors reported to affect the educational experiences of those living with SCD. • To map the extent and content of educational policies on SCD at local authority and school level. • To work towards a suggested educational policy framework for SCD.
  • 13. • How do young people living with SCD experience their school education? – School education – Experience with the condition – Socio-economic and cultural context
  • 14. • What are the features of the current educational context that constitute barriers and supportive mechanisms for young people with SCD? – Educational system in England – Barriers – Supporting services – Education policies
  • 15. • What are the numerical parameters within which young people with SCD are educated? – Parameters – Context – Content
  • 16. • What are the range and nature of educational policies of schools and local education authorities on SCD? –Nature of educational policies –Range of policies
  • 17. 1. Literature review • Preparation • Review of secondary sources 2. Quantitative • 107 education authorities and policies • 569 young people under 25 about their educational experiences • 200 schools attended by pupils with SCD. 3.Qualitative • 40 depth, tape- recorded interviews • 8-10 case studies with completion of yearlong • Diaries and follow- up interviews. • Policy development workshops at regional seminars
  • 19. Specifications Percentages Sex Male 49 Female 51 Age groups 4 16 3 5–10 43 11–18 49 19–25 5 Ethnicity Black African 60 Black Caribbean 29 Black other 8 Other (including not stated) 3
  • 20. • Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school. Simon Martin Dyson, Karl Atkin, Lorraine A. Culley, Sue E. Dyson, Hala Evans and Dave T. Rowley http://www.youtube.com/watch?v=IIlKuSv7 0EQ
  • 21.
  • 22. School absentees • One in eight has school absences. • No help to catch up with missed studies. Access during class • No toilet • No water Physical activity • Force to take unsuitable exercise • Called lazy when tired
  • 23. Triggers to pain episodes • Physical environment (temperature, school furniture) • Social environment (being upset by teachers or other pupils) Policy initiatives • Preventative measures • Social attitudes Lack of inclusion of children with SCD in schools
  • 25. Attitude to disclosing SCD to others (39) Mother as advocate in negotiations with school (25) Denied water during class (19) Challenges of re- entry to school following absence (13) School absences (39) Concern over lack of help to catch up lessons missed (24) Made to take unsuitable exercise (18) School physical infrastructure (13) In pain at school (36) Denied toilet breaks (21) Information does not work (17) SCD as negative capital (9) Concern about fitting in at school (30) Called lazy (21) Being Bullied (16) Support offered not matching need (8) Discreditable (28) Affected by school temperature (21) Accounting for self (16) School attempts an innovative response (8)
  • 26. School absentees Physical exercise Use of toilet Drink water Infection Temperature Individual health care plan Pain crisis
  • 27. • Experience of a young student with sickle cell pain in school http://www.youtube.com/watch?v=cKgWA4N 6lls
  • 28.
  • 29. • Nicholas H. and his mother, Bridget, talk about life with sickle cell disease. Nicholas was diagnosed with sickle cell disease soon after he was born. He suffered from hand-feet syndrome as a baby and had his gallbladder and spleen removed at age 5. Penicillin, hydroxyurea and other medicines have helped him and his family manage the illness and the severe pain crises that can result in hospitalization. Now 15 and an honour student in school, Nicholas enjoys "hanging out," listening to music, playing video games, wrestling and learning Brazilian jujitsu. http://www.youtube.com/watch?v=iKQmQHh4E2w
  • 30. Contributing factors • Infections • Cold and/or damp conditions • Pollution • Dehydration • Strenuous exertion • Stress • Sudden changes in temperature • Alcohol • Caffeine • Smoking Crisis prevention • keep warm • Eat healthily • Take moderate exercise • Drink plenty of fluids, • Seeking medical advice if you have a fever • Avoiding smoking and alcohol, • keeping up to date with medications and vaccinations • Avoid stress.
  • 32. •Screening –Education (informed decisions) –avoid having children with SCD. •Education campaigns –Stereotyping –Stigma •Integration –Schools –Community –Society •Communications between parents, schools and children with SCD
  • 33. • Peer group • Parents/careers • Teachers • Community • Society Social • Heat and cold • Access to water and toilets • Exercise Physical • Discrimination • Stigma • Fear • Stress Psychological
  • 34. • Social determents of health has an impact on sickle cell sufferers. • Lack of knowledge and understanding of SCD among school staff and students. • Disclosure of SCD is not easy or straightforward, it depends on the content and context of the individuals.
  • 35. • Communication: Miscommunication between parents/careers, schools and health professionals. • Stigma and discrimination against young people with sickle cell. • Interventions: Successful interventions should be holistic and multi-sectoral. • Policy level: SCD is invisible in education policy terms as few local authorities are willing to be involved.
  • 36.
  • 37. • Abuateya, H; Atkin, K; Culley, LA; Dyson, SE and Dyson, SM (2008) Young People with Sickle Cell Disorder and Education: A Knowledge Review. Diversity in Health and Social Care 5 (2): PP.123-135. [ISSN 1743-1913]. • American Anthropological Association, 2. (2011) Do our genes determine our health?. Available at: www.understandingrace.org/humvar/sickle_01.html- American Anthropological Association, 2011 (Accessed: 01 June 2013). • Dyson, S. M.; Atkin, K.; Culley, L.A.; Dyson, S. E.; Evans, H. (2011) Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school. Sociology of Health & Illness. 33 (3), pp. 465–483. http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01301.x/abstract • Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2009) Reported school experiences of young people living with sickle cell disorder in England. British Educational Research Journal 36(1):125-142. • Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) PP. 47-60. • 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) PP. 2036-2044. • Haller, J.O., Berdon, W.E. & Franke H., 2. (2001) 'Sickle cell anemia: The legacy of the patient (walter clement noel), the interne (ernest irons) and the attending physician (james herrick) and the facts of its discovery', Pediatric Radiology, 31 (12), pp.889-890. • NHS Choices, 2. (2012) Sickle cell anaemia. Available at: http://www.nhs.uk/conditions/Sickle-cell- anaemia/Pages/Introduction.aspx (Accessed: 01 June 2013). • World Health Organisation, 2. (2012) Sickle cell disease prevention and control. Available at: http://www.afro.who.int/en/clusters-a-programmes/dpc/non-communicable-diseases- managementndm/programme-components/sickle-cell-disease.html (Accessed: 30 May 2013). • World Health Organisation, 2. (2013) Sickle-cell disease and other haemoglobin disorders. Available at: http://www.who.int/mediacentre/factsheets/fs308/en/ (Accessed: 01June13).