Kategoriarkiv: Om projektet – About the project

So, what’s my PhD project about, anyway?

When people ask me what my project is about, I usually answer ”aphasia” and we end up in a discussion (or sometimes more of a lecture from my part, to be honest) about what aphasia is and is not. But, what is my project about, more specifically? Now that I have a year and a half left to the finish line, I am starting to have an answer to that question.

My project is about identity construction when living with aphasia in a digital society, and it is based on four studies. These four studies are at different levels, starting at the individual level (about stigma management strategies when communicating online), moving to the interactional level (about identity dilemmas) and the group level (about literacy practices), to end up at the societal level (about media representations). So my perspective gets wider and wider as I move forward through the studies.

And where am I right now? Well, study 1 is published (you find the full text version here and a Swedish summary here!). Study 2 is submitted to a journal and I can’t wait to hear what the reviewers have to say about it. Study 3 is what my mind is most occupied with right now, since I just completed the data collection. I conducted ethnographic research at a ”folk high school” with an education for people with aphasia, staying there with them for three weeks. It was great! So, the next step for study 3 is to analyze all the data (video, audio, photos, notes…). And study 4 is still being planned in detail, before the data collection can begin. Hopefully, I can soon share some more results with you!

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Sista föreläsningen som student? 

Idag gick #livetsomdoktorand in i en ny fas, för idag har jag varit på den sista föreläsningen i min roll som student. Det kändes passande att föreläsningen hölls av professor emeritus (läs gurun) Berth Danermark och att den handlade om olika perspektiv på funktionshinder. 

Nu kvarstår att göra två examinationsuppgifter och sedan är jag klar med hela kursdelen inom forskarutbildningen. Är det en milstolpe jag ser där framme? 

Att vara doktorand och läsa kurser vore inte alls lika roligt om det inte var för de fina (kloka, inspirerande, stöttande, trevliga och allmänt fantastiska) doktorandkollegorna! Tack, Renee och Ellen, för trevliga kursdagar i Jönköping! 

Renee Luthra, Helena Taubner, Ellen Backman

Hedersuppdrag: prata om #afasi med Strokeföreningen och Afasiföreningen 

Ikväll har jag haft ett hedersuppdrag: jag har pratat om min forskning med Strokeföreningen och Afasiföreningen i Skaraborg. Att sitta på min kammare och forska blir meningsfullt först när det sker i dialog med människorna det berör. 

Så tack för att jag fick komma och prata med er och för att jag hela tiden får lov att lära mig mer av er! Och tack för rosen. 🙂

Etikansökan postad

Idag har jag postat min (andra) etikansökan! Att bedriva forskning där människor medverkar innebär ett stort etiskt ansvar. Genom historien – och i nutid! – har det visat sig att forskare ibland bokstavligt talat går över lik för att kunna driva igenom sina projekt. För att förhindra att människor far illa av att delta i forskning finns därför en rad forskningsetiska regler, och all forskning som avser människor måste godkännas av en etikprövningsnämnd innan den får genomföras.

För min egen del innebär detta att jag måste (vilket jag gärna gör!) etikpröva alla delar av mitt projekt som innebär att personer med afasi medverkar. I början av projektet (i februari 2015) genomfördes en etikprövning av den första halvleken av mitt projekt – och nu är det dags igen! Efter mitt halvtidsseminarium i våras går mitt projekt in i en ny fas, och en ny etikprövning ska genomföras. Det har inneburit en del arbete att skriva ansökan, men jag märker också att det gick lättare den här gången än den förra. Jag har lärt mig mycket sedan dess!

Nu är ansökan (35 sidor i 18 kopior!) postad till den regionala etikprövningsnämnden i Lund, och jag kan bara vänta på deras utlåtande.

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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! 

Conference on Different Bodies, here I come!

I will be spending Sweden’s unofficial national holiday, Midsummer, abroad this year since I will attend the conference ”Different Bodies: (Self-)Representation, Disability and the Media” at the University of Westminster in London. My ongoing PhD project raises a lot of questions about online embodiment of the disabled body, so I am really looking forward to listening to the other presenters. The theme for my own presentation will be ”At least I can Walk – Online Re-negotiation of Identity in Post-stroke Aphasia”.

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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.