Online identity and stigma management in post-stroke aphasia. 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.
Interviews were conducted with nine individuals agedthree men and six women with post-stroke aphasia. In addition, a total of 1, screenshots of online posts e. Drawing on social semiotics specifically the three dimensions of online communication mentioned by Kressi. 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. For the participants to pass Goffman,should they want to, they needed to control all three dimensions. If the context or the composition revealed the stigma, controlling the content
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Human language is the mediating tool through which we express and construct our identities Edwards, ; Van Leeuwen, We are, in many ways, the signs we make, i. We create and revise images of one another by interpreting verbal and non-verbal signs.
What becomes of their identity — offline and online — when they become unable to use their words? These questions are crucial for people living with aphasia, since their language is severely impaired overnight, possibly evoking identity crisis Shadden, and stigma Goffman, Therefore, we investigated online strategies for re-negotiating identity when living with aphasia.
Our specific aim was to identify online strategies for stigma management developed by working-age Swedish Internet users with post-stroke aphasia, by scanning online data for stigma symbols and compare those to interview data. The study is relevant to people living with aphasia, because of the potentially increased knowledge among clinicians, researchers and technology developers. Awareness is raised about the importance of including identity issues and online aspects within aphasia rehabilitation and the need of further research in this field.
In addition, knowledge about disabilities like aphasia is required to create accessible and inclusive technology. "Describe yourself in three words dating website" about the Internet as an emancipatory environment for people with disabilities is contradicting Thoreau, On one hand, the Internet may be empowering because of its disembodying capacities.
For instance, Buckley argued that teachers with physical disabilities may benefit from teaching in online settings compared to traditional classrooms, due to the potential disembodiment. On the other hand, when studying identity construction of people with disabilities, specifically on dating sites, Saltesp.
Many studies of identity and disability assume intact linguistic function. Those participants were literate, though, meaning we cannot entirely compare their situation to those living with language impairments.
Aphasia is a language disability caused by brain injury, most commonly stroke. One central question is whether to be perceived by oneself or others as a person with aphasia or not Hinckley, Despite the fact that the Internet forms an important part of Western literacy practices Barton, and hence our identity construction, only a few studies combine aphasia, identity and online communication.
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Moss, Parr, Byng, and Petheram described that people with post-stroke aphasia felt ashamed of their online writing, because the text represented themselves.
They implemented various strategies to improve their writing, including asking others to assist them. These conclusions are consistent with the idea that aphasia may lead to social exclusion Parr, They Caute et al. Previous research shows that language is crucial in identity construction, entailing a need of re-negotiation of identity when living with aphasia.
A majority of the affected individuals if living in Western countries like Sweden were "Describe yourself in three words dating website" users pre-onset. Nevertheless, research combining all three fields aphasia, identity and online communication is scarce.
Instead, online technology is often studied as a rehabilitating tool. Mortley, Wade, and Enderby studied online tele-rehabilitation, finding it to be successful because of increased independence of the individuals with aphasia. Almost a decade later, Hall, Boisvert, and Steele confirmed these findings in a systematic review, concluding that there are both benefits e.
In addition to the rehabilitation approach, the Internet is sometimes studied as a source of information about aphasia. Kerr, Hilari, and Litosseliti investigated the information needs of stroke
Describe yourself in three words dating website, with and without aphasia.
Similarly, Ghidella, Murray, Smart, McKenna, and Worrall evaluated aphasia websites regarding quality and accessibility, concluding that accessible websites are not necessarily of high quality, or vice versa. Thus, further research combining all three fields aphasia, identity and online communication is needed.
Brandenburg, Worrall, Rodriguez, and Copland argued that further research is needed about accessibility for people with aphasia, in particular regarding mobile technology. Functional writing, especially in natural contexts, is much less studied. Considering the importance of the Internet as a literacy practice of the contemporary Western society Barton,the study of functional writing in natural contexts should include online writing. Two main theories constituted the theoretical and analytical framework of this study: While social semiotics is about sign-making in general, signs of particular interest were those revealing potentially discrediting information about a person, so called stigma symbols Goffman, From the field of social semiotics, the three dimensions of communication described by Kressi.
According to Goffman identity consists of three aspects: Thus, a stigma emerges when there is a discrediting discrepancy between what others perceive about you based on categorization and how you see yourself.
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On the other hand, Goffman also stated that some attributes are discrediting almost everywhere: Within the contemporary Western society, aphasia might be such an attribute, due to the pervading literacy norms Barton, Not being able to meet demands to communicate properly, as is the case when living with a language disability such as aphasia or, as in the study of Thompson, Bacon, and Auburndyslexiamay therefore be a stigma in almost any situation.
Therefore, this study did not focus on whether aphasia is a stigma or not, but on stigma management specifically in online settings. The signs are not merely words Barton, ; Van Leeuwen, but also e. For people with aphasia, gestures form a crucial part of communicating de Beer et al.
Goffman differentiated types of stigma based on visibilityi.
Visibility is not to be confused with know-about-ness Goffman, The fact that an interaction partner knows about your stigma is not the same as the stigma being visible. A non-visible stigma requires a more careful stigma management. Should you want to pass i. The arguments as to whether attempting to pass is a preferable strategy, when living with aphasia, are contradicting. Hamiltonon the other hand, argues that people with post-stroke aphasia should be encouraged to maintain their pre-stroke identity.
This is confirmed by the findings of Wallace et al. To maintain the pre-stroke identity, attempting to pass then becomes a desirable strategy. Due to these contradicting implications, stigma
Describe yourself in three words dating website strategies are analysed without being assessed as positive or negative in this study.
Kress argued that online communication takes place in
Describe yourself in three words dating website dimensions: He also argued that contexts have different affordanceswhich are to be considered when choosing how composition and where context to communicate. In relation to a certain online environment, our behaviour is limited to a possible set of actions. Affordances are not to be confused with conventions Norman,since the former are properties of the artefact rather than socially accepted and anticipated behaviour.
Thus, when studying stigma symbols online we need to consider the three dimensions and the affordances of the online contexts. A triangulation Creswell, of methods, combining qualitative interviews and online observations was used to collect data. Nine working-age Swedish individuals with non-fluent aphasia following left-hemisphere strokes participated in the study table 1.
Characteristics of the Participants.
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Time from onset to interview. The participants were recruited by advertising in aphasia forums offline and online, with help from the Swedish Aphasia Association and speech and language therapists. Already recruited participants also suggested others.
All interested were invited to participate, if they met the inclusion criteria. They should be aged and living with post-stroke left-side aphasia medical
Describe yourself in three words dating website were consulted for confirmation ; have Swedish as their mother tongue since focus might have shifted from the aphasia to second language issues, had they another mother tongue ; and be somewhat familiar with the Internet so that online issues were not simply dismissed.
Time since onset was set to be at least 6 months according to praxis within Swedish aphasia research. The only pronounced exclusion criterion was any prior relation to the researchers. Interviewing people with aphasia is challenging since their ability to communicate is limited. The PCI is a qualitative discursive-dialogic method, combining inductive, deductive and abductive approaches.
The interviewer engages in clarifying any misunderstanding by switching between questions generating storytelling and comprehension. The goal is to reconstruct knowledge about a relevant problem in this case the re-negotiation of identity when living with aphasia.
Prior to the interviews, two pilots were conducted to ensure the relevance of the interview guide which eventually consisted of the following themes: The interviews were recorded and later transcribed verbatim using NVivo.
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Immediately after each interview a postscript was created to summarize the experiences of the interviewer. Methodologically inspired by netnography Kozinets,online observations were conducted on online material produced by the participants. Thus, which sites to include was not determined in advance.
Like the Swedish population in general the Internet Foundation In Sweden, the participants turned out to mainly use Facebook, Instagram and blogs.
For a few of them, relevant material was also found on specific webpages.
Describe yourself in three words dating website of them Ellen and Frida previously had accounts on dating sites, but their profiles were no longer active. No interaction took place between the researcher and the participants within the included sites.
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Online identity and stigma management in post-stroke aphasia. 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. Interviews were conducted with nine individuals aged , three men and six women with post-stroke aphasia. In addition, a total of 1, screenshots of online posts e. Drawing on social semiotics specifically the three dimensions of online communication mentioned by Kress , i.
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.
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