"It shouldn't be something that's evil, it should be talked about": A phenomenological approach to epilepsy and stigma

Hdl Handle:
http://hdl.handle.net/10149/95874
Title:
"It shouldn't be something that's evil, it should be talked about": A phenomenological approach to epilepsy and stigma
Authors:
Kilinç, S. (Stephanie); Campbell, C. (Carol)
Affiliation:
The University of Teesside. School of Social Sciences and Law.
Citation:
Kilinç, S. and Campbell, C. (2009) '"It shouldn't be something that's evil, it should be talked about": A phenomenological approach to epilepsy and stigma', Seizure, 18 (10), pp.665-671.
Publisher:
Elsevier
Journal:
Seizure
Issue Date:
Dec-2009
URI:
http://hdl.handle.net/10149/95874
DOI:
10.1016/j.seizure.2009.09.001
Abstract:
Objective: The concepts of felt and enacted stigma (Scambler and Hopkins, 19861) are well established in epilepsy research. However, more recent research tends to focus on either those doing the stigmatising or utilises quantitative methodologies, exploring daily occurrences of stigma for those with epilepsy. The current study aims to explore the concept of felt stigma in today's society, arguing that a return to a phenomenological approach would allow people with epilepsy to discuss issues of importance to them, seeing them as the experts on this concept (Byrne, 200117). Methods: Fifty-two people with epilepsy were recruited via an advertisement on the Epilepsy Action website, thirty of whom took part in a follow-up interview. The interviews were analysed following Lemon and Taylor's (1997)22 phenomenological approach. Results: Three themes emerged, surrounding issues of embarrassment of having the condition, non-disclosure of the diagnosis and misconceptions of the condition. These findings support previous research which argues that people with epilepsy perceive a stigma due to feeling different from the rest of society, meaning that they conceal their condition as a way of managing such stigma and thus need to renegotiate their social identity. Additionally, the moderating role of education in increasing knowledge of epilepsy, with a view to reducing felt stigma, was evident. Conclusions: The findings indicated a need to promote epilepsy awareness programmes as a means of increasing public knowledge of epilepsy, with the aim of reducing felt stigma.
Type:
Article
Language:
en
Keywords:
awareness; epilepsy; knowledge; phenomenology; qualitative research; stigma
ISSN:
1059-1311
Rights:
Author can archive post-print (ie final draft post-refereeing). For full details see http://www.sherpa.ac.uk/romeo/ [Accessed 07/04/2010]
Citation Count:
0 [Scopus, 07/04/2010]

Full metadata record

DC FieldValue Language
dc.contributor.authorKilinç, S. (Stephanie)en
dc.contributor.authorCampbell, C. (Carol)en
dc.date.accessioned2010-04-07T12:25:58Z-
dc.date.available2010-04-07T12:25:58Z-
dc.date.issued2009-12-
dc.identifier.citationSeizure; 18 (10): 665-671en
dc.identifier.issn1059-1311-
dc.identifier.doi10.1016/j.seizure.2009.09.001-
dc.identifier.urihttp://hdl.handle.net/10149/95874-
dc.description.abstractObjective: The concepts of felt and enacted stigma (Scambler and Hopkins, 19861) are well established in epilepsy research. However, more recent research tends to focus on either those doing the stigmatising or utilises quantitative methodologies, exploring daily occurrences of stigma for those with epilepsy. The current study aims to explore the concept of felt stigma in today's society, arguing that a return to a phenomenological approach would allow people with epilepsy to discuss issues of importance to them, seeing them as the experts on this concept (Byrne, 200117). Methods: Fifty-two people with epilepsy were recruited via an advertisement on the Epilepsy Action website, thirty of whom took part in a follow-up interview. The interviews were analysed following Lemon and Taylor's (1997)22 phenomenological approach. Results: Three themes emerged, surrounding issues of embarrassment of having the condition, non-disclosure of the diagnosis and misconceptions of the condition. These findings support previous research which argues that people with epilepsy perceive a stigma due to feeling different from the rest of society, meaning that they conceal their condition as a way of managing such stigma and thus need to renegotiate their social identity. Additionally, the moderating role of education in increasing knowledge of epilepsy, with a view to reducing felt stigma, was evident. Conclusions: The findings indicated a need to promote epilepsy awareness programmes as a means of increasing public knowledge of epilepsy, with the aim of reducing felt stigma.en
dc.language.isoenen
dc.publisherElsevieren
dc.rightsAuthor can archive post-print (ie final draft post-refereeing). For full details see http://www.sherpa.ac.uk/romeo/ [Accessed 07/04/2010]en
dc.subjectawarenessen
dc.subjectepilepsyen
dc.subjectknowledgeen
dc.subjectphenomenologyen
dc.subjectqualitative researchen
dc.subjectstigmaen
dc.title"It shouldn't be something that's evil, it should be talked about": A phenomenological approach to epilepsy and stigmaen
dc.typeArticleen
dc.contributor.departmentThe University of Teesside. School of Social Sciences and Law.en
dc.identifier.journalSeizureen
ref.citationcount0 [Scopus, 07/04/2010]en
or.citation.harvardKilinç, S. and Campbell, C. (2009) '"It shouldn't be something that's evil, it should be talked about": A phenomenological approach to epilepsy and stigma', Seizure, 18 (10), pp.665-671.-
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