• Critical realism, agency and sickle cell: case studies of young people with sickle cell disorder at school

      Dyson, Simon M.; Atkin, Karl; Culley, Lorraine; Dyson, Sue E. (Taylor and Francis, 2013-07-26)
      Critical realism suggests that historical structures may operate as underlying generative mechanisms but not always be activated. This explains the near-absence of references to racism by black students with sickle cell disorder (SCD). Through case studies we show how latent mechanisms are not activated, and how social actors come to develop corporate agency. Themes discussed include: wider/historical racisms (carers' own experiences of overt racism at school); conscious actions (moving away from a school where racism was experienced); naming racism as an emergent strategy (when communal discussions enable multiple negative experiences to be framed and named as racism); and `passing` (not ostensibly experiencing racism if one is sufficiently light-skinned). Critical realism suggests how racism may be structuring the experiences of students with SCD at school even in the absence of specific accounts by young people.
    • Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school.

      Dyson, Simon M.; Atkin, Karl; Culley, Lorraine A.; Dyson, Sue E.; Evans, Hala; Rowley, Dave T. (Elsevier, 2010)
      Sickle cell is a leading genetic condition, both globally and in England. Little research has been conducted into the experiences of young people with sickle cell at school. A mixed methods study (May 2007–September 2008) based on 569 questionnaires and 40 taped interviews with young people living with sickle cell disorder (SCD) in England found that students with SCD are faced with a dilemma as to whether or not to disclose their sickle cell to teachers and pupils: the latent and hidden characteristics of their symptoms make it possible, in Goffmanesque terms, to “pass”. However the variable and unpredictable course of sickle cell is a reminder of Goffman’s notion of being “discreditable”. We found that teacher or pupil knowledge that a young person has sickle cell is not statistically associated with reported better treatment of young people with SCD at school. Analysis of interviews suggests most young people favour disclosing their sickle cell status (on the basis that teachers will then know what actions to take in the face of bouts of illness and in terms of making allowances for illness or school absences). A minority disagreed because disclosure was felt to attract unwarranted attention or disabling attitudes. Attitudes to disclosing to peers were more varied: either for or against disclosure to peers, or ambivalent in that they felt a tension between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. Some health promotion advice appears to assume that teacher and/or peer awareness is the key to improving school experience for young people with SCD, but this is not borne out by this study. Rather a change in wider school environments is required such that young people with SCD are supported irrespective of whether they themselves foreground or play down their disabled identity.
    • 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.
    • School ethos and variation in health experience of young people with sickle cell disorder at school.

      Dyson, Sue E.; Atkin, Karl; Culley, Lorraine; Demaine, Jack; Dyson, Simon M. (Radcliffe Publishing, 2012-05)
      Young people with serious chronic illnesses, such as sickle cell disorder, report high levels of negative experiences at school that have adverse effects on their health. Disclosure of sickle cell status appears to be unrelated to improved experiences, and alternative explanations for variable health experiences at school are required. This paper draws on a multi-methods study of young people with sickle cell disorder in England in an attempt to make sense of variable experiences unrelated to disease severity or to teacher/peer awareness of sickle cell disorder. School ethos refers to the manner in which schoolbased interactions combine to bring into effect school values, including the attitudes expected of young people, the attitudes expected of teachers, how young people relate to each other, how young people relate to staff, how the school relates to the community, and a holistic concern with the spiritual, moral, cultural and social development of the young person. It is proposed that these interactions and resulting values are a key to understanding the variable health experiences of young people with sickle cell disorder at school.
    • Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.

      Dyson, Simon M.; Atkin, Karl; Culley, Lorraine A.; Dyson, Sue E.; Evans, Hala (Wiley-Blackwell, 2011-03)
      The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu’s notions of field, capital and habitus. Young people with sickle cell 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 or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell 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.