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  • 1.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Afasi och narrativt aktörskap – mediebilder, självberättelser och multimodala litteracitetspraktiker2019Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Aphasia is an aquired language disability, most commonly caused by stroke. Since aphasia involves difficulties producing and/or understanding language, written as well as spoken, it entails a reduced ability and opportunity to author one’s own narrative. In the face of this reduced narrative agency (Baldwin, 2005), people who acquire aphasia need to renegotiate their identity. To do so they mirror their stories of self in social structures, including the contemporary communication landscape in which digital tools play an important part, but also norms and attitudes – strongly influenced by the media – towards people with language disabilities. Drawing on theories about the interplay between agency and social structures, this doctoral thesis aims to – by studying media representations of people with aphasia, stories of self authored by people with aphasia and literacy practices within a group of people with aphasia – examine narrative agency in people who live with aphasia in a society influenced by textual and digitally mediated communication.Three studies (A-C), presented in four articles, were conducted. Study A aimed at investigating narrative types in Swedish newspaper articles about living with aphasia. A majority of the newspapers contained stories in which the person with aphasia was talked aboutrather than talked to. In the few cases in which the person was given voice (or was assisted by a vicarious voice), the stories were mainly framed as successs stories. Study B then aimed at examining stories of self authored by nine individuals with aphasia who were interviewed and then observed in social media. They applied a variety of strategies to manage their stigma (Goffman, 1963)and to navigate identity dilemmas (Bamberg, 2011). In addition, the participants experienced a higher degree of narrative agency when communicating in social media than in other practices. The key to this enhanced narrative agency was the multimodality offered by the digital tools. Finally, study C aimed at describing literacy practices within a group of people with aphasia attending an aphasia course at a Swedish folk high school. Ethnographic data were collected during three weeks. The group’s narrative agency was strongly influenced by the use of digital screens to access multimodal literacy practices and by co-creation of literacy events between group members in which they used each other’s abilities. To discuss the overall findings from all three studies, Bourdieus thinking tools linguistic capital, linguistic markets and legitimate language (1991)were used. Although aphasia means partial language loss, some linguistic capitals may remain. When a linguistic market includes multiple modalities, a person with aphasia may chose ways of communication based on her remaining abilities. Thus, her narrative agency increases when her remaining linguistic capitals correspond to what is considered legitmate language within a certain linguistic market. That was the case when the participants in study B and C engaged in multimodal literacy practices. But when the stories of people with aphasia are told in Swedish newspapers, they are portrayed with a low degree of narrative agency. In addition, the newspaper stories are framed as success stories, meaning that when people with aphasia renegotiate their stories of self, they mirror their stories in grand narratives about happy endings. Further research is suggested about representations of people with aphasia in other media types (with a higher degree of multimodality), but also about how the linguistic capitals of people with aphasia interact with other forms of social capital such as gender and class.

  • 2.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    “At least I can walk” – online re-negotiation of identity in post-stroke aphasia2017Conference paper (Refereed)
  • 3.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Increased Agency through Screens and Co-Creation – Literacy Practices within a Group of People with Aphasia at a Swedish Folk High School2019In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 21, no 1, p. 197-206Article in journal (Refereed)
    Abstract [en]

    This article aims to analyse characteristics of collective and authentic literacy practices within a group of people with aphasia attending an aphasia course at a Swedish folk high school. The group included 12 individuals with aphasia who were studied during a period of 3 weeks. Ethnographic data consists of video and audio recordings, photos and field notes. Two main characteristics of the literacy practices were identified: digital screens dominated and bridged the online/offline boundary, and shared knowledge enabled the participants to co-create literacy. The literacy practices were emancipatory, because they provided ways for the participants to un-mask their inherent competence, increasing their agency. When the use of digital technology transforms a (formerly non-literacy) practice into a multimodal literacy practice, and when an individual with aphasia becomes part of a literacy co-creation practice, the disability (understood as a relation between individual and environmental characteristics) caused by aphasia is reduced. © 2019 The Author(s). 

  • 4.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Multimodality as a key to identity re-negotiation when living with post-stroke aphasia in a digitalised society2019Conference paper (Refereed)
  • 5.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Online and offline re-negotiation of identity when living with post-stroke aphasia2017Conference paper (Refereed)
  • 6.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Online and offline re-negotiation of self when living with post-stroke aphasia2017Conference paper (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.

  • 7.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Online communication as improved stigma management in post-stroke aphasia2016Conference paper (Refereed)
    Abstract [en]

    Background: As in most developed countries, a large majority of the Swedish population are Internet users. Within the working-age population, the percentage is >90. Hence a large extent of the literacy practices and identity construction of Swedish people take place online. The increasing importance of being able to read and write is a challenge for people living with an acquired language disorder, such as aphasia (affecting some 10.000 individuals in Sweden every year). Linguistic practices are important mediating tools for identity construction. Aphasia can therefore be understood not only as (partially) losing one’s language and literacy skills per se, but also as being deprived of one’s identity. However, this is rarely taken into account in aphasia rehabilitation, and research combining aphasia, identity and online communication practices is scarce.

    Aim: The aim of the current study is to examine how working-age Swedish Internet users with post-stroke aphasia construct their identity online.

    Methods: Interviews were conducted with nine Swedish individuals (aged 26-61, three men and six women) with post-stroke aphasia. In addition, a total of >2000 online posts (e.g. photos, videos, text, emoticons) made by the same participants were collected.

    Results: Analyses of the data, based on Goffman’s theory of stigma management, indicated that the participants made active choices whether to display or hide their aphasia online. Some of them proudly displayed their difficulties (e.g. by posting their medical record, or posting texts with errors) while others made efforts to hide them (e.g. by sharing texts written by others instead of writing themselves, or preferring emoticons or the like-button over commenting in writing), thus creating a difference between their offline and online identity. Offline, this kind of stigma management was less available to them.

    Conclusion: A possible conclusion is that the participants’ online literacy practices to a large extent aimed at controlling who knew what about them, i.e. to control their stigma by presenting different identities in different contexts. It appears as if the participants consider the Internet, with its wide range of communication tools (including pictures, like-buttons, emoticons), a better arena for stigma management than their offline practices.

  • 8.
    Taubner, Helena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Online re-negotiation of identity in post-stroke aphasia2016Conference paper (Refereed)
  • 9.
    Taubner, Helena
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Hallén, Malin
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Success Stories – Narrative Types in Swedish Journalistic Newspaper Articles about Living with AphasiaManuscript (preprint) (Other academic)
  • 10.
    Taubner, Helena
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Hallén, Malin
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Wengelin, Åsa
    Department of Swedish, University of Gothenburg, Gothenburg, Sweden.
    Signs of aphasia: Online identity and stigma management in post-stroke aphasia2017In: Cyberpsychology : Journal of Psychosocial Research on Cyberspace, ISSN 1802-7962, E-ISSN 1802-7962, Vol. 11, no 1Article in journal (Refereed)
    Abstract [en]

    This study aimed to investigate online strategies for re-negotiating identity, in terms of stigma management, developed by working-age Swedish Internet users with post-stroke aphasia, i.e., acquired language impairment caused by brain injury. Interviews were conducted with nine individuals (aged 26-61, three men and six women) with post-stroke aphasia. In addition, a total of 1,581 screenshots of online posts (e.g., photos, videos, text, emoticons) created by the same participants were collected. Drawing on social semiotics (specifically the three dimensions of online communication mentioned by Kress (2003), i.e., composition, content and context) and Goffman’s theory of stigma (1963, specifically the concepts of stigma management and passing), qualitative thematic analysis was performed. Regarding composition, three themes emerged: Relying on others or technology, Beyond speaking and writing, and Controlling speed and timing. The participants rarely posted content about aphasia, but some of them used the Internet to raise awareness. Different online contexts had different meaning to the participants in terms of identity. Being open about the aphasia in one forum did not imply the same behaviour in another forum (e.g., dating sites). For the participants to pass (Goffman, 1963), should they want to, they needed to control all three dimensions. If the context or the composition revealed the stigma, controlling the content was not enough to pass. The multimodality of the Internet enabled the participants to manage their stigma in a variety of ways and to choose whether to be perceived as persons with aphasia or not. © 2017, Masaryk University. All rights reserved.

  • 11.
    Taubner, Helena
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Hallén, Malin
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.
    Wengelin, Åsa
    Department of Swedish, University of Gothenburg, Gothenburg, Sweden.
    Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society2020In: Aphasiology, ISSN 0268-7038, E-ISSN 1464-5041, Vol. 34, no 3, p. 300-318Article in journal (Refereed)
    Abstract [en]

    Background: Self-identity construction through “stories of self” is highly relevant for people with aphasia, not only because the onset entails a “biographical disruption” but also since their ability to keep their “stories of self” going is reduced. Three dilemmas (constancy/change, sameness/difference and agency/dependency) are known to be central to identity. In a digitalised society like Sweden, self-identity construction, including the navigation of these dilemmas, takes place both online and offline. Nevertheless, research combining aphasia, identity and online issues is scarce.

    Aim: This qualitative study aims, in terms identity dilemmas, to investigate self-identity construction in working-age persons living with post-stroke aphasia in a digitalised society (i.e. Sweden). Are the dilemmas relevant to the participants, and if so, how do they navigate them online and offline?

    Methods and Procedures: Nine individuals (three men and six women, aged 24–54 at onset) with mild or moderate post-stroke aphasia participated. The data comprises nine individual audio-recorded interviews and 1,581 screenshots from online observations. Qualitative analyses were performed (vertically and horizontally), combining inductive and deductive approaches.

    Outcomes and Results: All three dilemmas are relevant to the participants. They construct their self-identity as both the same as they were pre-stroke and changed. They are both the same and different in relation to other stroke survivors (with or without aphasia), i.e. both “disabled” and “normal”. They display both dependency and agency. Thus, they navigate the dilemmas by constantly negotiating what to include in their stories of self. In addition, telling one story of self offline does not imply telling the same story online.

    Conclusion: The dilemmas are intertwined and highly relevant to the participants. Offline and online settings evoke different ways for them to navigate the dilemmas. Increased awareness of the possible struggle with self-identity dilemmas in people with aphasia, and the possible difference between their online and offline self-identities, should be of value to family members, clinicians and researchers. Further research based on a larger sample is suggested. © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

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