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Poster Abstracts

United for Participation in Society- the exploration of an ongoing research process in a participatory health research project.

Authors:

Malin Tistad ,

Karolinska Institutet, Sweden Dalarna University, SE
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Lill Hultman,

Karolinska Institutet, Sweden Södertörn University Karolinska University Hospital, SE
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Mikael Åkerlund,

Karolinska Institutet, Sweden, SE
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Jeanette Nelson,

Karolinska Institutet, Sweden, SE
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Fredrik Sandman,

Karolinska Institutet, Sweden, SE
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Lena von Koch

Karolinska Institutet, Sweden, SE
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Abstract

Introduction: The formation of alliances with communities has become central to public health research, especially those involving more vulnerable and excluded groups. Recent thinking about science and society has labeled this different way of doing joint research as co-production of knowledge, a blurring of the boundaries between researchers and service users. Creating new knowledge together with people with lived experience both complicates and broadens the research process. In order to enable co-production, there is a need to create innovative environments that emphasize the value of both scientific and experience-based knowledge.

Context and objectives: At Karolinska Institutet, a research project is underway that examines how participation and feelings of belonging are created or absent in different contexts and situations for adults living with acquired brain injury (ABI). The project is an example of participatory health research where a stated ambition is to, together with the allied community, capture their lived experiences and develop experience-based knowledge. In an ambition to create a supporting environment for the joint research process between researchers and people with ABI, the purpose of this study is to increase the knowledge about challenges and opportunities involved in this process.

Method and data analysis: The research group consists of two academic researchers belonging to health care science and social science respectively, and three “co-researchers” with lived experience of ABI. The group has weekly digital meetings, where we work for an average of 1,5 hour, corresponding to the co-researchers’ paid time in the project. We work with different parts of the research process: research design, preparing study information for different stakeholders, interview guides and text for the project webpage.

A colleague was asked to conduct interviews with members in the research group about experiences from partaking in the research process considering the individual as well as the group process. These interviews, written reflections and notes from meetings were analyzed using inductive thematic content analysis to describe challenges and opportunities of co-production.

Preliminary results: A constant challenge was to find the balance between the type of research activities we wanted to do as a group, in relation to what would be reasonable to demand from members of the research group with different assignments and allocated time. The fact that the co-researchers knew each other before they joined the group was considered a strength since it made them more comfortable with expressing their opinions in the group. It was easier to express opinions when one knew that sharing different types of knowledge claims was perceived as valuable contributions, which was especially emphasized by fellow researchers living with aphasia which sometimes affected their communication. Trust between group members was built over time, and among the co-researchers there was a willingness to help and perform at the same time as there was a concern that fatigue would occur on a meeting day. It was also discovered that certain spaces and places, such as digital and physical meetings were better suited to different types of activities.
How to Cite: Tistad M, Hultman L, Åkerlund M, Nelson J, Sandman F, von Koch L. United for Participation in Society- the exploration of an ongoing research process in a participatory health research project.. International Journal of Integrated Care. 2022;22(S3):276. DOI: http://doi.org/10.5334/ijic.ICIC22345
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Published on 04 Nov 2022.

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