Participation in society after an acquired brain injury - a participatory approach

The life that awaits people with acquired brain injury (ABI) after rehabilitation has been described as a "black hole" and experiences of isolation, restrictions to participate in society and in social activities are commonly reported.

This participatory project focuses on participation in society, which people with ABI and stakeholders describe as one of the most important aspect of life after ABI. The participatory approach entails that people with ABI are actively involved throughout the research process.

In the role as community researchers, people with ABI and academic researchers have formed the research team that developed the objectives, research questions and methods in the present study proposal.The objective is to increase knowledge about participation and sense of belonging for persons with ABI; how they are created and environmental factors that support or restrict participation and belonging and possible desired changes (study 1 and 2).

A second objective is to increase knowledge about experiences of sharing experience-based knowledge of living with ABI with others, the conditions for such sharing and if and how participation in such sharing contributes to a sense of belonging (study 3).In study 1, interviews with 50-60 people with ABI and a questionnaire about participation and sense of belonging will be used.

Study 2 is an in depth study by observations, interviews and photovoice.

In study 3, contexts in which people with ABI share their experiences of living with ABI will be identified and data will be collected by interviews and observations. To support people with difficulties to communicate their experiences, data will also be collected by photovoice.

Photovoice entails the use of photos to represent experiences related to the research questions.The project will generate relevant and useful findings from real world settings that will contribute to creating better conditions for participation and sense of belonging in society for people with ABI.