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Education and young people with sickle cell disorder: a knowledge review.Abuateya, Hala; Atkin, Karl; Culley, Lorraine A.; Dyson, Sue E.; Dyson, Simon M. (Radcliffe Publishing, 2008-06)Sickle cell disorders (SCD) are a group of chronic inherited blood conditions. The majority of studies on SCD have a clinical focus and deal with how those living with SCD 'manage' what is constructed as a given: the 'condition' of SCD. Consequently, many studies present the psychological impact, referring uncritically to what are termed 'coping strategies'. Current debates on SCD and other chronic conditions rarely engage with the broader social context. In part response to this, our paper presents a critical review of the literature on SCD, young people and education. The paper evaluates literature that touches on education and SCD, before concluding with a broad discussion of future research and policy priorities. Throughout, we reflect on how the process of constructing a knowledge base from available literature is problematic. We specifically discuss how current research presents a skewed picture of the experience of SCD, which is of limited value to those responsible for education policy and practice. The paper concludes that research should move beyond describing the basic health needs of people with SCD by including the social context of their lives. Existing literature on the individual educational experiences of young people living with SCD is, however, either dated or limited by being based on conceptual argument rather than empirical data. Consequently, there is a need for well-designed studies to establish the best way to meet the educational needs of young people with SCD, reflecting not only their health needs in school, but the whole context of living with SCD, including interaction with disabling or racist structures. Furthermore, this holistic approach could contribute to a wider understanding of the educational needs of young people from minority ethnic backgrounds and of young people living with chronic illnesses.
Local authorities and the education of young people with sickle cell disorders in England.Dyson, Simon M.; Abuateya, Hala; Atkin, Karl; Culley, Lorraine A.; Dyson, Sue E.; Rowley, David T. (Routledge, 2008)The successful inclusion of minority ethnic pupils with sickle cell disorders (SCD) raises a number of challenges for educational systems. In England, local education authorities were important drivers for innovative responses to complex needs and the former Inner London Education Authority produced guidance in 1989 on SCD in schools. Local education authorities, however, have been superseded by centralised curricula on the one hand and by local management of schools on the other. We know little about the impact of these changes on managing chronic conditions such as SCD. A survey was conducted with 107 local authorities in England to assess responses to needs of pupils with SCD. The majority of authorities did not know the numbers of children with SCD under their jurisdiction, even though most agreed with government guidance that all such children should have individual healthcare plans. Only two had policies on SCD and most authorities referred to generic guidance on pupils with medical needs in schools. The paper concludes, however, that such generic guidance fails in a number of ways to meet the needs of young people with SCD, in terms of prevention, challenging disability discrimination and, crucially, in failing to recognise how ethnicity and racism mediate the experiences of young black disabled students. Developing policies suitable for the education needs of young people with SCD would also help develop the very narrow guidance currently suggested for inclusion of pupils with medical conditions.
Reported school experiences of young people living with sickle cell disorder in England.Dyson, Simon M.; Abuateya, Hala; Atkin, Karl; Culley, Lorraine; Dyson, Sue E.; Rowley, Dave (Wiley, 2010)A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One in eight has school absences equating to government-defined ‘persistent absence’. Students with SCD report that they are not helped to catch up after these 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 environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill health would also support children with other chronic illnesses at school.