Economic and Social Research Council End of Award Report

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To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

ECONOMIC AND SOCIAL RESEARCH COUNCIL END OF AWARD REPORT

For awards ending on or after 1 November 2009

This End of Award Report should be completed and submitted using the grant reference as the email subject, to [email protected] on or before the due date.

The final instalment of the grant will not be paid until an End of Award Report is completed in full and accepted by ESRC. Grant holders whose End of Award Report is overdue or incomplete will not be eligible for further ESRC funding until the Report is accepted. ESRC reserves the right to recover a sum of the expenditure incurred on the grant if the End of Award Report is overdue. (Please see Section 5 of the ESRC Research Funding Guide for details.)

Please refer to the Guidance notes when completing this End of Award Report.

Grant Reference RES-000-23-1486 Grant Title Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease Grant Start Date 1st September Total Amount £ 231,108.77 2006 Expended: Grant End Date 28th February 2011 Grant holding De Montfort University Institution Grant Holder Professor Simon M Dyson Grant Holder’s Contact Address Email Details Hawthorn Building [email protected] De Montfort University Telephone Leicester LE1 9BH (0116) 257 7751 Co-Investigators (as per project application): Institution Dr Sue E Dyson De Montfort University Professor Lorraine Culley De Montfort University Professor Karl Atkin University of York Dr Jack Demaine Loughborough University

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

1. NON-TECHNICAL SUMMARY

Please provide below a project summary written in non-technical language. The summary may be used by ESRC to publicise your work and should explain the aims and findings of the project. [Max 250 words]

Sickle cell disease (SCD) is a serious chronic illness that, in the UK, mainly affects minority ethnic groups. The impact of sickle cell on the educational experiences of young people was previously an under-researched area.

The project found that local authorities did not know numbers of young people with SCD in schools and could not therefore determine how many had an individual health care plan as required by the Department of Education. Less than half of schools had individual health care plans for their students with sickle cell. Young people with SCD reported missing an average of 16 school days per year. However, the intermittent nature of the absences meant statutory requirements on local authorities and schools to make special provisions were not applied. The majority of young people with SCD felt they were not helped to catch up the education they missed. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired.

There was no link between young people reporting teachers or other pupils “knowing” they had SCD and any improved experiences at school. This left young people unsure as to the relative merits of disclosing their SCD. Changing the wider social and physical environment of the school is necessary so that young people with SCD are supported irrespective of whether or not they themselves choose to hide or disclose their sickle cell.

2. PROJECT OVERVIEW

a) Objectives Please state the aims and objectives of your project as outlined in your proposal to the ESRC. [Max 200 words]

Aims: 1) To map the extent and content of educational policies on SCD at local authority and school level. 2) To map the range and frequency of key factors reported to affect the educational experiences of those living with SCD. 3) To describe the perceptions held by those with SCD of their educational experiences 4) To develop a user-led educational policy framework for SCD.

Objectives

1) Produce a review of the literature on SCD and education, including a review of international sources 2) Conduct a postal survey of all LEAs in England establishing the extent and content of LEA policies on sickle cell 3) Conduct a postal survey of all schools in areas of high SCD prevalence to determine the implementation of LEA policies on SCD, and the content of any school policies on sickle cell

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

4) Conduct a national survey of students with SCD 5) Conduct depth interviews with a sample of 50 students with SCD 6) Undertake up to 8 case studies of children living with SCD 7) Convene 5 regional seminars to discuss the initial research findings with stakeholders and refine policy priorities 8) Prepare a policy briefing paper on SCD and education and web-based policy guidelines

b) Project Changes Please describe any changes made to the original aims and objectives, and confirm that these were agreed with the ESRC. Please also detail any changes to the grant holder’s institutional affiliation, project staffing or funding. [Max 200 words]

The project was granted a six month extension to account for the time demands of NHS Research Governance (chiefly the six months required for a series of three Hepatitis B vaccinations and confirmatory blood tests for the researchers in order to secure occupational health clearance to administer a questionnaire in hospital clinics). The research fellow employed by the project (Hala Evans, née Abuateya) left the project two months early and was replaced by a research assistant (Eileen Buchanan) working at 0.33fte for four months.

c) Methodology Please describe the methodology that you employed in the project. Please also note any ethical issues that arose during the course of the work, the effects of this and any action taken. [Max. 500 words]

Local Authority Survey Questionnaires were sent to the named Chief Executive and the Head of Children’s Services of each of 150 first-tier local authorities in England, as listed on the ministry web-site (DfES, 2007). Completed responses were received from 107 local authorities, a response rate of 71%. As with other surveys (see below) data were entered and analyzed using SPSS.

Survey of 569 Young People with SCD The research proposal was approved by De Montfort University Ethics Committee, by a Multi- Centre Research Ethics Committee, and the Research and Development Offices of six NHS Trusts. The questionnaire was administered through three routes: twelve sickle cell voluntary groups (113 responses); sickle cell nurse counsellors in three different primary care trusts (56 responses), and sickle cell outpatient clinics in three London NHS Hospital Trusts (400 responses). Only five potential respondents were noted to have declined directly to complete a questionnaire.

Interviews Forty qualitative taped interviews, using a topic guide, and enabling formulation of questions to be adjusted for age of respondent (aged 6-25, average age 17), were conducted by one of three researchers. The young person chose who else was present: mothers (5), fathers (1) and specialist nurse (1). The interviews took place at hospital outpatients (21); community centre (9); home (3); counselling centre (3), or university (2). The first 15 interviewees were recruited opportunistically. The rest were recruited searching for diversity in experience, including using questionnaire responses (see above) to identify a mix of those with good, bad or intermediate school experiences in terms of extent to which they felt they had been helped to make up for

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

missed schooling. The interviews were transcribed in full by the main interviewer or one of two transcribers. Field notes were kept by the researchers in association with the interviews. During analysis these field notes were placed next to the transcript of the interview to which they referred. Transcripts were read by five of the research team and a thematic approach to analysis applied, including mapping frequency of themes across all interviews.

Survey of Schools 258 schools were identified by young people with SCD in their survey. By expanding this list to include another 242 schools nearby to the schools listed (either primary schools feeding a secondary school or the local secondary school in the same area as the primary school), we increased the sampling frame to 500 schools. Replies were received from 206/500 schools, a response rate of 41.2%

Case Studies We recruited 12 young people through sickle cell support groups. Two did not commence data collection owing to illness. In ten cases we collected a taped interview with the young person, a taped interview with their main carer, and a two-week diary of school experiences, recorded retrospectively at the end of the day into a digital recorder. In four of the ten cases we received a second set of recordings for a different two week period (the other six not providing a second recording for reasons of illness, hospitalization or having left school).

d) Project Findings Please summarise the findings of the project, referring where appropriate to outputs recorded on ESRC Society Today. Any future research plans should also be identified. [Max 500 words] Most clinical studies deal with how people with SCD “manage” the taken-for granted “condition.” Psychological studies refer uncritically to “coping strategies”. Current debates on SCD thus rarely engage with the broader social context of living with a chronic illness (Journal Article: Diversity in Health and Social Care).

Most local authorities did not know the numbers of children with sickle cell under their jurisdiction, even though most agreed with government guidance that all such children should have individual health care plans. Only two had policies on SCD and most authorities referred to generic guidance on pupils with medical needs. Generic guidance does not address preventive health, fails to challenge disability discrimination, and does not recognise how ethnicity mediates the experiences of young black disabled students (International Journal for the Sociology of Education).

Young people with SCD miss considerable time from school, typically in short periods of 2-3 days. Students with SCD report that they are not helped to catch up school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical and social environment as triggers to episodes of their illness (British Educational Research Journal).

Teachers or peers’ knowing that the student has SCD makes no significant difference to reported negative experiences at school. Most favour disclosure to teachers, because they hope teachers will know what actions to take if they become ill and will make allowances for school absences. Some disagreed, citing instances of attracting unwarranted attention or of experiencing disabling attitudes. Attitudes to disclosing to peers were ambivalent between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. A change in wider school environments is required so that young people with SCD are supported irrespective of whether they foreground or play down their disabled identity. (Social Science and Medicine)

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

Young people with SCD are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care, and the field of the school with its emphases on routines, consistent attendance, and contextual demands for active and passive pupil behaviour. The tactics the young people living with SCD can then employ are therefore fragile: they work only contingently, transiently, or have unintended consequences of displacing other valued social relations. The tactics of the young people are framed by other social struggles: innovations in school procedures address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers negotiate and advocate in support of their child, but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell. (Sociology of Health and Illness)

A policy-orientated web-site has been produced, documenting extensive engagement with stakeholders and creating applied resources designed to translate findings into impact (See: www.sicklecelleducation.com).

e) Contributions to wider ESRC initiatives (eg Research Programmes or Networks) If your project was part of a wider ESRC initiative, please describe your contributions to the initiative’s objectives and activities and note any effect on your project resulting from participation. [Max. 200 words]

n/a

3. EARLY AND ANTICIPATED IMPACTS

a) Summary of Impacts to date Please summarise any impacts of the project to date, referring where appropriate to associated outputs recorded on ESRC Society Today. This should include both scientific impacts (relevant to the academic community) and economic and societal impacts (relevant to broader society). The impact can be relevant to any organisation, community or individual. [Max. 400 words]

Scientific Impacts

The scientific impact of academic articles has been noted by journal reviewers:

“I like this submission. I think it addresses an important issue (the educational and social experiences of children with sickle cell disease) which fits clearly in the scope of the journal, and it does so with a subtlety and complexity of analysis which I personally appreciated. I thought the application of Goffman's concept of passing was a useful theoretical framework - particularly because the authors indicated that the situation generated such complex, ambivalent and sometimes contradictory responses from the children (and parents) that it would be completely inadequate to suggest that the notion of 'passing' was entirely applicable to their situation. I was glad to see that the authors discussed the critiques of notions of passing from the disability studies literature (e.g. the work of Mike Oliver) and I thought it added to the strength of the analysis” (Social Science and Medicine)

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

“The paper is well structured, very clearly written and the interview excerpts are well chosen and support the main argument. It has the potential to make an important contribution to our understanding of how illness experiences are constituted. The illness experience is often theorised at a micro level in sociology, but what this paper does well is to show precisely how individual experiences of illness are shaped by broader structures through the interaction of field and habitus. In particular it demonstrates how a specific field outside of the clinic (the school) impacts on such experiences for young people. The empirical data highlight the practical consequences of the clash between the two separate fields of the clinic and the school – the effects this disjunction has on young people’s health, education, social life and self- esteem”.(Sociology of Health and Illness)

Societal Impacts

The project has been used as the main evidence in an All Party Parliamentary Group report on sickle cell and thalassaemia at the House of Commons. It has received media coverage on BBC Radio 4 Case Notes, BBC Newsround, BBC Radio London and The Voice. It has informed the production of leaflets for use by teachers and peers in schools to help young people with sickle cell, leaflets produced by young people living with sickle cell: My Pupil has Sickle Cell Disease: What do I Need to Know? and My Friend has Sickle Cell Disease: What do I Need to Know?

b) Anticipated/Potential Future Impacts Please outline any anticipated or potential impacts (scientific or economic and societal) that you believe your project might have in future. [Max. 200 words]

The project web-site www.sicklecelleducation.com will provide a means of monitoring the ongoing impact of the project, having had 2,323 page views during 2010.

Off-prints of the British Educational Research Journal have been purchased and distributed to stakeholders, including parents of young people with SCD. These have the potential to provide a warrant for parents in their negotiations with schools.

Copies of leaflets and posters produced by young people with sickle cell that draw upon the research evidence of this project (My Pupil has Sickle Cell Disease: What do I Need to Know? and My Friend has Sickle Cell Disease: What do I Need to Know? ) have been purchased and sent to the 206 schools who replied to the survey of schools.

Presentations to international audiences (USA, Canada, Ghana) have the potential to influence policy-making in other countries. In particular, the potential for school-based interventions to effect savings on health service treatment costs has attracted the interest of a WHO-recognized health economist Scott Grosse from the Centers for Disease Control in Atlanta, Georgia, USA.

A guide to sickle cell school policy, based on user experiences of good practice, has been created using Creative Commons copyright to enable the guide to be freely used and adapted nationally and internationally.

You will be asked to complete an ESRC Impact Report 12 months after the end date of your award. The Impact Report will ask for details of any impacts that have arisen since the completion of the End of Award Report.

To cite this output: Dyson, SM, et al (2011) Education for Minority Ethnic Pupils: Young People with Sickle Cell Disease ESRC End of Award Report, RES-000-23-1486. Swindon: ESRC

4. DECLARATIONS

Please ensure that sections A, B and C below are completed and signed by the appropriate individuals. The End of Award Report will not be accepted unless all sections are signed.

Please note hard copies are NOT required; electronic signatures are accepted and should be used.

A: To be completed by Grant Holder Please read the following statements. Tick ONE statement under ii) and iii), then sign with an electronic signature at the end of the section. i) The Project This Report is an accurate overview of the project, its findings and impacts. All co-  investigators named in the proposal to ESRC or appointed subsequently have seen and approved the Report.

ii) Submissions to ESRC Society Today Output and impact information has been submitted to ESRC Society Today. Details of  any future outputs and impacts will be submitted as soon as they become available. OR

This grant has not yet produced any outputs or impacts. Details of any future outputs and impacts will be submitted to ESRC Society Today as soon as they become available. OR This grant is not listed on ESRC Society Today.

iii) Submission of Datasets Datasets arising from this grant have been offered for deposit with the Economic and  Social Data Service. OR

Datasets that were anticipated in the grant proposal have not been produced and the

Economic and Social Data Service has been notified.

OR No datasets were proposed or produced from this grant.