Kategoriarkiv: Afasi – Aphasia

Nice meeting you all – Final day at the #NordicAphasia Conference

I found the final two lectures of the Nordic Aphasia Conference, given by Madeleine Crucie and Carole Pond, very inspiring. I listened to Madeleine in London this past December too, and it was a pleasure hearing her again. Her work on quality of life is essential, but today she instead talked about her recent work with the LUNA-approach to aphasia rehabilitation. It is all about meaningful personal narratives, which makes it truly interesting. Make sure to watch the videos on storieswithaphasia.moonfruit.com!
Next, Carole Pound made a extremely important point about us living in a dehumanising time, referring both to the refugee situation and to the present president of the United States. But what about health care in general and aphasia rehabilitation in particular?


To end the conference, there was a panel discussion based on questions produced (and placed in Lise Randrup Jensen’s now famous Shoe Box) by the attendees during the past two days. And what a panel it was! Elisabeth Ahlsén, Melanie Kirmess, Madeleine Cruice, Aura Kagan, Simon Horton and Carole Pound. I think I wasn’t the only one who felt all star struck!


It has been a pleasure meeting so many interesting researchers, clinicians and others during these days. Some of them were already my friends, some of them became new friends. Some of them I got a chance to talk to, others not. There is never enough time… But we’ll meet again at the next Nordic Aphasia Conference, in June 2019 in Turku, Finland!

 

Nothing new under the sun – Second day at the #NordicAphasia Conference

A parade of renowned researchers gave lectures today, during the second day of the Nordic Aphasia Conference. Julius Fridriksson (from the University of South Carolina) reminded us that every idea we can come up with probably allready has been tried out by someone else. For example, the idea of Speech Entrainment  (where the person with aphasia articulates words at the same time as someone else, looking at their mouth) was studied in 1913. He showed us a photo of the brain from one of the participants in the 1913 study and it was really striking to see the damage. 


I also enjoyed Monica Blom Johansson’s talk about the impact of aphasia on the life of significant others. She pointed out that there is a correlation between family members’ knowledge about aphasia and the quality of the relationships. The more information the family members get about aphasia, the better the relations within the family. Now, there’s a pedagogical challenge! 

 

I was also very pleased to find the most tipically Danish dessert I know, at the lunch buffé: Rødgrød med fløde. 

Conversations that matter – First day of the #NordicAphasia Conference in Copenhagen

So, what are my impressions of the first day at the Nordic Aphasia Conference in Copenhagen? What will I remember about this day? 


To be honest, I think I will most clearly remember reading a bed time story to a five year old girl – in Danish. And maybe that is what Aura Kagan’s truly inspirational talk this morning was about too… She emphasised that aphasia rehabilitation should be about conversations that really matter, instead of naming pictures or repeating phrases. And what could be more meaningful than to read bed time stories (even in a language that is far from perfect)?


This afternoon, I did my poster presentation. I really enjoyed the chats and encouragement. It is great to notice than issues of online identity are welcomed into the aphasia research field. 


Last, but certainly not least, I must acknowlede the aphasia artists showing their artwork next to the posters, and the aphasia choir giving their very first concert. Important, interesting and inspirational! 

Tecken på afasi – identitet på nätet när man lever med afasi efter stroke

telefonfotokvinnaliten

Vårt språk är centralt för våra identiteter. Vi blir dem vi är genom att kommunicera. Mycket av kommunikationen i den västerländska kulturen sker på internet, men trots det finns det nästan ingen forskning som kombinerar alla tre fälten afasi, identitet och internet. Studier om afasi och internet handlar istället ofta om rehabilitering [2, 3, 4, 5, 6, 7], möjligheten att hitta information om afasi [8] eller hur tekniken kan förbättras för personer som lever med afasi [9, 10].

Syftet med den här studien [1] var att undersöka hur nätanvändande personer i yrkesverksam ålder som lever med afasi efter stroke hanterar sin identitet när de kommunicerar på internet.

Som teori användes Goffmans stigmateori [12] som handlar om hur man hanterar att man uppfattas som annorlunda. För att istället uppfattas som normal kan man vilja dölja vissa egenskaper, och det kallar Goffman för att man försöker ”passera”.

Dessutom användes socio-semiotik [11] som bland annat handlar om att kommunikation sker på tre olika nivåer [13]: komposition (d.v.s. form, som till exempel stavning och grammatik), innehåll (vad man berättar) och kontext (i vilket sammanhang kommunikationen sker).

Metod

Nio personer som levde med afasi efter stroke ingick i studien. De var mellan 26 och 61 år gamla. Sex av dem var kvinnor och tre män. De studerades genom intervjuer [14] och observationer på internet [15]. Intervjuerna var mellan 1 och 3 timmar långa.

Observationerna på nätet skedde retroaktivt, d.v.s. från intervjudatumet och bakåt i tiden. Totalt analyserades 1581 inlägg från Facebook, Instagram, bloggar och websajter.

Analysen byggde på tre frågor:

  • Finns det synliga tecken på att deltagarna har afasi eller på att de försöker ”passera” i deras kommunikation på nätet?
  • Om det är så, syns afasin då i kommunikationens komposition, innehåll eller kontext?
  • Finns det skillnader mellan vad deltagarna säger i intervjuerna och hur de kommunicerar på nätet?

Resultat

Resultatet visade framför allt att deltagarna gjorde på olika sätt, men också att det var olika mellan olika nätforum. Att man kommunicerar på ett sätt på Facebook betyder inte att man gör likadant på till exempel en dejtingsajt.

När det gällde kommunikationens komposition hittades tre teman:

  • Att förlita sig på teknik eller andra personer – deltagarna tog hjälp av andra personer eller av tekniska hjälpmedel för att kommunicera
  • Bortom tal och skrift – deltagarna hade fördel av att man kan använda många olika sätt att kommunicera på nätet (som t.ex. med bilder, filmer eller gilla-knappen)
  • Att kontrollera tajming och hastighet – det var viktigt för deltagarna att ha kontroll över hastigheten när de kommunicerade och de valde helst sätt som inte krävde så hög hastighet

Det var inte så vanligt att deltagarna postade innehåll om afasi, men några av dem använde internet för att sprida information och öka kunskapen om afasi. Att en person gjorde på ett sätt (till exempel för att försöka passera) i en typ av kontext innebar inte att hen gjorde samma sak i ett annat forum.

De tre nivåerna (komposition, innehåll och kontext) var inte oberoende av varandra. Om en person skulle vilja ”passera”, måste hen kontrollera nivåerna i en specifik ordning, nämligen först kontexten, sedan kompositionen och sist innehållet.

 

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Fotnot

Denna text är en kortfattad svensk sammanfattning av artikeln Signs of Aphasia – Online Identity and Stigma Management in Post-Stroke Aphasia [1], som är en del av Helena Taubners avhandlingsprojekt om afasi.

 

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Källor

  1. Taubner, H., M. Hallén, and Å. Wengelin, Signs of Aphasia – Online Identity and Stigma Management in Post-Stroke Aphasia. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 2017. 11(1): p. article 10.
  2. Yasuda, K., et al., Effectiveness of a vocabulary data file, encyclopaedia, and Internet homepages in a conversation‐support system for people with moderate‐to‐severe aphasia. Aphasiology, 2007. 21(9): p. 867-882.
  3. Behrns, I., L. Hartelius, and Å. Wengelin, Aphasia and computerised writing aid supported treatment. Aphasiology, 2009. 23(10): p. 1276-1294.
  4. Furnas, D.W. and L.A. Edmonds, The effect of computerised Verb Network Strengthening Treatment on lexical retrieval in aphasia. Aphasiology, 2014. 28(4): p. 401-420.
  5. Sjöqvist Nätterlund, B., A new life with aphasia: everyday activities and social support. Scandinavian Journal of Occupational Therapy, 2010. 17(2): p. 117-129.
  6. Mortley, J., J. Wade, and P. Enderby, Superhighway to promoting a client‐therapist partnership? Using the Internet to deliver word‐retrieval computer therapy, monitored remotely with minimal speech and language therapy input. Aphasiology, 2004. 18(3): p. 193-211.
  7. Hall, N., M. Boisvert, and R. Steele, Telepractice in the assessment and treatment of individuals with aphasia: a systematic review. International journal of telerehabilitation, 2013. 5(1): p. 27-38.
  8. Kerr, J., K. Hilari, and L. Litosseliti, Information needs after stroke: What to include and how to structure it on a website. A qualitative study using focus groups and card sorting. Aphasiology, 2010. 24(10): p. 1170-1196.
  9. Ghidella, C., et al., Aphasia websites: An examination of their quality and communicative accessibility. Aphasiology, 2005. 19(12): p. 1134-1146.
  10. Menger, F., J. Morris, and C. Salis, Aphasia in an Internet age: wider perspectives on digital inclusion. Aphasiology, 2016. 30(2-3): p. 112-132.
  11. Hodge, R. and G. Kress, Social semiotics. 1988, Cambridge: Polity Press.
  12. Goffman, E., Stigma – notes on the management of spoiled identity. 1963, London: Penguin Books Ltd.
  13. Kress, G.R., Literacy in the new media age. 2003, London: Routledge.
  14. Witzel, A. and H. Reiter, The problem-centred interview. 2012, London: SAGE.
  15. Kozinets, R.V., Netnography: redefined (2nd ed.) 2015, London: SAGE.

First article published!

Today, my first article was published! One down, three to go – since my PhD project is aiming at publishing four articles separetely and then combining them into a thesis. I have been working with this article for about two years, so I am really satisfied that it is finally published.

The article is called ”Signs of aphasia: Online identity and stigma management in post-stroke aphasia” and it is published in the journal ”Cyberpsychology: Journal of Psychosocial Research on Cyberspace”. It is available in fulltext online, so if you want you may read it at cyberpsychology.eu/article/view/6759/6234

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The article ”Signs of aphasia” on the publication wall at Halmstad University.

Nordic Aphasia Conference in Copenhagen – here I come!

The Nordic Aphasia Conference will take place in Copenhagen in June, and I just received news that I will be presenting a poster!

The title of my poster is ”Online and offline re-negotiation of identity when living with post-stroke aphasia” and hopefully I will get interesting and challenging questions from the other attendees. Looking forward!

I also look forward to meeting some of the people I met in London last December. Great people doing great research!

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Types of #aphasia (National Aphasia Association)

So, what is aphasia, again? Well, aphasia comes in many types. Depending on the cerebral location and severity of the brain injury, the linguistic consequences vary.

The National Aphasia Association (US) has put together a graphic presentation of different types of aphasia, based on if the speech is fluent, if the person can understand what others say and if the person can repeat words or phrases. On their website, the types are also described more in detail. Very informative, don’t you think?

Worth noting, though, is that the terms ”Broca’s” anda ”Wernicke’s” aphasia are being critiqued.

Btw, have you seen the two YouTube videos I recommended earlier?

Third day of the @IARC2016 #aphasia conference 

The third day of Christmas – no, sorry – the conference! Two keynote speakers, four platform talks, a load of parallell workshops and twenty three posters. Puh! 

Some very brief thoughts from a tired but happy brain: 

1) When researchers like Miranda Rose and Carola de Beer talks about multimodality, they mean non-verbal language such as gestures. That if, of course, both important and interesting – but it makes me wonder how they think about the multimodality of the Internet. I whish we’d had more time to chat about that, but I’m hoping there will be more opportunities in the future. 

2) Great to chat with Madeleine Crucie about issues of identityin terms of psychological wellbeing (and thus health). She truly is an inspiration!

3) I will definitely stay tuned on the EVA park-project! A virtual would (very much like Second Life, btw) for people with aphasia to practice social interaction – how cool is that? 

4) Already looking forward to the 18th IARC conference in Portugal in September 2018. See you there!


Second day of the @IARC2016 #aphasia conference

Another great day at the IARC aphasia conference! Two keynote speakers, eight platform talks, four lightning talks and twenty two posters – including mine. Thank you, all, for coming to chat about issues of online identity! I look forward to hearing from you in the future.

Two very brief thoughts: 1) I can’t wait to read the upcoming systematic review by Caroline Baker et al, on depression in aphasia. 2) It was great hearing Madeleine Cruice talk about quality of life in aphasia and the potentially very positive impact of speech and language therapists. Since my project is taking place within the setting of ”Health and lifestyle”, her research is highly relevant (since identity issues are important for quality of life, and since quality of life is an important part of health).