Together - for participation and belonging in society for people with acquired brain injury
The lives of people with acquired brain injury have been described as a "black hole" when rehabilitation is completed. Many have experiences of isolation, limited participation in social activities and in society.
About the project
The aim of the project is to increase knowledge about the situation for people with acquired brain injury in terms of experiences of participation and sense of belonging in society. We will investigate when and how experiences of participation and belonging are created.
Another aim is to increase knowledge about how people with acquired brain injury share experience-based knowledge about living with the injury. For example, it can be about what knowledge is shared and what it means to share knowledge.
The co-research group
In the project, people living with acquired brain injury work together with researchers. We have formed a group – the co-research group – with three persons with acquired brain injury and two of the participating researchers. The persons with acquired brain injury are employed as research assistants at KI for the work they do in the group. In this way, the experience-based knowledge about living with acquired brain injury becomes integrated into the entire research process.
The co-research group meets weekly and discusses issues related to the project's sub-studies. For example, we have identified social media as an important environment for studying the sharing of experience-based knowledge, and we have written information texts about the studies together to make them easier to read.
Co-workers in the study
The co-research group
"My name is Malin Tistad and I'm an affiliated researcher at Karolinska Institutet. I also work as a researcher and teacher at Dalarna University. I am responsible for the research project.
I think it's really important to work together with the people that the research is about. The fact that we have now created the co-research group and started working together is both inspiring and important."
"My name is Lill Hultman and I am an affiliated researcher at Karolinska Institutet working in this project. I also work as a researcher and teacher at the social work program at Södertörn University.
It is engaging to work in the research group and I learn a lot. Hopefully, we can contribute to better living conditions for people with acquired brain injury and their relatives."
"My name is Jeanette Nelson. In 2014, I suffered an aneurysm in the brain. It became an emergency open operation. Afterwards, I developed a disability of the type aphasia. Before that, I worked as a flight attendant and health coach at SAS. I have also worked as a physiotherapist.
I want to share the knowledge I have gained through my own experiences."
"My name is Fredrik Sandman. I had a stroke and aphasia in 2013. I am a board member of the Aphasia Association Stockholm County.
I am passionate about this, I want me and others to have it easier in their everyday life with stroke and aphasia."
"My name is Mikael Åkerlund and I am a former postal employee who had a stroke in 2005. I think that issues relating to participation in society are important and concern us all, but perhaps above all those of us with disabilities.
I hope to share some of the experiences I have gathered during these years with acquired brain injury."
Presentation för nätverket ”Hjärna Tillsammans”
Den 9 oktober var medforskargruppen inbjuden till Stockholms sjukhem för att hålla en presentation för nätverket, ”Hjärna Tillsammans”. Det Stockholmsbaserade nätverket består av patientorganisationer och rehabiliteringsaktörer som tillsammans vill bidra till bättre villkor för personer med förvärvade hjärnskador och deras närstående. På plats berättade projektledare Malin Tistad om vårt gemensamma forskningsprojekt och medforskargruppen. Därefter fortsatte Lill Hultman att redogöra för resultaten av en studie som handlar om delandet av erfarenhetsbaserad kunskap. Studiens syfte var om att ta reda på hur erfarenhetsbaserad kunskap om att leva med förvärvad hjärnskada, delades, användes och värderades i två arbetsgrupper, s.k. praxisgemenskaper. Presentationen avslutades med ett panelsamtal där medforskargruppen deltog. Tillsammans delade vi med av oss av våra erfarenheter av samverkan och samproduktion. Vi berättade om de möjligheter, utmaningar och lärdomar som uppstått under forskningsresans gång.
Article published in Forskning om funktionshinder pågår (in Swedish)
In Forskning om funktionshinder pågår 2023 issue 2, pp.3-5, there is an article published about the co-research group entitled, Akademiska forskare och personer med förvärvad hjärnskada forskar tillsammans. (Academic researchers and people with acquired brain injury research together)
Article published in Socialvetenskaplig tidskrift (in Swedish, abstract in English)
The article Som erfarenhetsforskare, då är man med och bestämmer i forskningsprojektet (As an experiential researcher, when you are involved in deciding in the research project) is now available to read in Socialvetenskaplig tidskrift.
Article published in Hjärnskadeförbundet Hjärnkraft's magazine (in Swedish)
Hjärnskadeförbundet Hjärnkraft's magazine number 1/2023 p. 18 there is an article about the co-research group entitled Researchers and people with their own experience of acquired brain injury collaborate in research projects.
The co-research group contributed with a film to the Marie Cederschiöld Days
The co-research group contributed with a film to the Marie Cederschiöld Days, which had the theme An ethical approach and co-creation in health care and social care.
Here you can see the film (about 6 min) where we together share reflections linked to collaborating in research.
Participation at the Nordic Network of Disability conference, Island, 2023
On May 11-12, representatives of the co-research group were part of the 700 participants who travelled to Reykjavik to participate in an international conference on disability research. In order to highlight needs, challenges, opportunities and the value of participatory research and co-creative processes, Lill Hultman had initiated a joint session - Towards increased user involvement in Participatory Action Research - and co-design processes. The session began with Lars Lindberg talking about the value of user participation in the design of support measures. This was followed by examples of how people with their own experience are involved in both research processes and product development. In this context, Mikael Åkerlund and Lena von Koch held our presentation, Exploration of collaboration and knowledge production, which focused on the work process within the co-research group and the value of experience-based knowledge. Annika Sköld and Catharina Gustavsson then went on to describe how they worked with user participation within respective projects. The session ended with Eric Asaba and Hanna Gabrielsson talking about how photovoice is a research method that can enable participatory research.
Participation at UK Stroke Forum November 29 – December 1, 2022
The UK Stroke Forum is the UK's largest multidisciplinary conference for health professionals focused on stroke. In connection with this year's conference, representatives from several research groups from KI participated. Results from two studies from our project were presented in the form of poster presentations. One presentation held by Malin Tistad presented the co-research group's experiences of conducting research together - "Challenges and enablers for an active partnership in research between academic researchers and people with stroke". The second presentation was held by Lill Hultman, "Experience-based knowledge of aquired brain injury- The value of shared knowledge and mutual learning processes". This presentation presented results from a case study examining different communities of practice that have emerged in two working groups; a profession-driven group and a user-driven group.
Participation at the ICIC22 conference 23-25 May
Lena von Koch, Fredrik Sandman and Malin Tistad participated in the ICIC22 (International Conference on Integrated Care) conference in Odense, Denmark 23-25 May. At the conference, research entitled: "United for Participation in Society-exploration of an ongoing research process in a participatory health research project" was presented
The Facebook Study
In late autumn 2021, the data collection in the Facebook study started. We follow two Facebook groups to increase knowledge about which issues are important to discuss and the meaning and importance of being a member in a Facebook group. In the film we talk about the study and the data collection.
Facebook-studien är i gång
"Erfarenhetsbaserad forskning" - artikel i tidningen Afasi.
I Afasiförbundets medlemstidning Afasi nr. 3/2021 kan du läsa en artikel om projektet. Tidningen läggs ut som ljudfil på Afasiförbundets webb och finns att lyssna på gratis.
The projeckt is finaced by Forte - the Swedish Research Council for Health, Working Life and Welfare.