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Online and offline re-negotiation of self when living with post-stroke aphasia
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.ORCID iD: 0000-0002-0826-4735
2017 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background: Aphasia, i.e. language disorder caused by brain injury (most commonly stroke), affects some 10.000 people in Sweden every year, 30% of whom are between 18 and 65. Much has been said about neurological or medical aspects of aphasia, but experiences of people affected are much less studied.

When living with post-stroke aphasia, the stroke constitutes a boundary between separate phases of life, often evoking an identity crisis and a need of a re-negotiation of self. Considering that 90% of the Swedish working-age population are Internet users, this re-negotiation process will necessarily include online aspects. Nevertheless, research combining aphasia, identity and online communication is scarce. Thus, this study aimed to investigate how working-age Swedish Internet users with post-stroke aphasia re-negotiate their identity, offline and online.

Method: Qualitative interviews were conducted with nine individuals (three men and six women) living with post-stroke aphasia (all diagnosed R470). At the time of the interviews, they were between 26 and 61 years old. In addition, a total of 1,581 online posts (e.g. photos, videos, text, emoticons) created by the same participants were analysed.

Results: The analyses indicate that the participants, in their re-negotiation of self, frequently position themselves in relation to other disabilities, e.g. by stating “I am not stupid” or “At least, I can walk”. This positioning varied depending on which points in time (i.e. pre-stroke, acute phase, rehabilitation, post-stroke) were taken into account.

Conclusion: Whereas some of the participants struggled to maintain a representation of themselves similar to their pre-stroke identity, some proudly embraced aphasia as a new aspect of their identity. Furthermore, they seemed to have better opportunities to control the renegotiation process in online settings than offline.

Place, publisher, year, edition, pages
2017.
National Category
Social Sciences Interdisciplinary
Identifiers
URN: urn:nbn:se:hh:diva-35116OAI: oai:DiVA.org:hh-35116DiVA: diva2:1146365
Conference
Nordic Network on Disability Research (NNDR) 14th Research Conference, Örebro University, Örebro, Sweden, May 3-5, 2017
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2017-10-10Bibliographically approved

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