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 1 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 2 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 3 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”.