• 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).

http://www.beds.ac.uk/

• 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 BirminghamLeicester

• 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

http://www.beds.ac.uk/

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

Issues Disclosure

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

planPain crisis

• Experience of a young student with sickle cell pain in school http://www.youtube.com/watch?v=cKgWA4N6lls

http://www.beds.ac.uk/

• 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.

Fra

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•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.

http://www.beds.ac.uk/

• 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).