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

  • Hala Evans
    ,
  • Simon Martin Dyson
    ,
  • Karl Atkin
    ,
  • Lorraine A. Culley
    ,
  • Sue Elizabeth Dyson
    ,
  • Dave T. Rowley
Research Output: Contribution to journal Article Peer-review

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.

Publication Information

Output type

Research Output: Contribution to journal Article Peer-review

Original language

English

Pages from-to (Number of pages)

Pages 2036-2044

Journal (Volume, Issue Number)

Social Science and Medicine (Volume 70, Issue 12)

Publication milestones

  • Published - 01/06/2010

Publication status

Published - 01/06/2010

ISSN

0277-9536

External Publication IDs

  • handle.net: 10547/250581
  • Scopus: 77952672715

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