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    Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school

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    Authors
    Dyson, Simon Martin
    Atkin, Karl
    Culley, Lorraine A.
    Dyson, Sue Elizabeth
    Evans, Hala
    Rowley, Dave T.
    Issue Date
    2010-06
    Subjects
    sickle cell disorder
    sickle cell
    education
    chronic illness
    stigma
    mixed methods
    young people
    
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    Abstract
    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. 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.
    Citation
    Dyson, S., Atkin, K., Culley, L., Dyson, S., Evans, H. and Rowley, D. (2010) 'Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school', Social Science & Medicine, 70 (12), pp.2036-2044.
    Publisher
    Elsevier
    Journal
    Social Science & Medicine
    URI
    http://hdl.handle.net/10547/250581
    DOI
    10.1016/j.socscimed.2010.03.010
    Additional Links
    http://linkinghub.elsevier.com/retrieve/pii/S0277953610002376
    Type
    Article
    Language
    en
    ISSN
    02779536
    ae974a485f413a2113503eed53cd6c53
    10.1016/j.socscimed.2010.03.010
    Scopus Count
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    IHR Institute for Health Research

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