Hala Abuateya, Karl Atkin, Lorraine A Culley, Sue E Dyson, Simon M Dyson
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.
