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

2.50
Hdl Handle:
http://hdl.handle.net/10547/250581
Title:
Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school
Authors:
Dyson, Simon Martin; Atkin, Karl; Culley, Lorraine A.; Dyson, Sue E.; Evans, Hala; Rowley, Dave T.
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
Issue Date:
Jun-2010
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
Appears in Collections:
IHR Institute for Health Research

Full metadata record

DC FieldValue Language
dc.contributor.authorDyson, Simon Martinen_GB
dc.contributor.authorAtkin, Karlen_GB
dc.contributor.authorCulley, Lorraine A.en_GB
dc.contributor.authorDyson, Sue E.en_GB
dc.contributor.authorEvans, Halaen_GB
dc.contributor.authorRowley, Dave T.en_GB
dc.date.accessioned2012-10-30T15:26:33Z-
dc.date.available2012-10-30T15:26:33Z-
dc.date.issued2010-06-
dc.identifier.citationDyson, 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.en_GB
dc.identifier.issn02779536-
dc.identifier.doi10.1016/j.socscimed.2010.03.010-
dc.identifier.urihttp://hdl.handle.net/10547/250581-
dc.description.abstractSickle 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.en_GB
dc.language.isoenen
dc.publisherElsevieren_GB
dc.relation.urlhttp://linkinghub.elsevier.com/retrieve/pii/S0277953610002376en_GB
dc.rightsArchived with thanks to Social Science & Medicineen_GB
dc.subjectsickle cell disorderen
dc.subjectsickle cellen
dc.subjecteducationen
dc.subjectchronic illnessen
dc.subjectstigmaen
dc.subjectmixed methodsen
dc.subjectyoung peopleen
dc.subject.classificationschool healthen
dc.titleDisclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at schoolen
dc.typeArticleen
dc.identifier.journalSocial Science & Medicineen_GB
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