Participation of people with acquired brain injury: Insiders perspectives

INTRODUCTION: Participation is important in rehabilitation of people with acquired brain injury (ABI). Studies have shown that their participation is problematic. It is, however, unknown how they experience their participation and what influences their participation. This study aims to answer the question how people with ABI experience participation and which environmental and personal factors may influence participation, as perceived by people with ABI. METHODS: A qualitative methodology was conducted by a team consisting of researchers, people with ABI and a mother of a daughter with ABI. Interviews and focus groups were held and followed by a working group in order to develop actions for improvement. RESULTS AND CONCLUSION: People with ABI contend that it is not the degree of participation that matters, but the quality of participation. They describe meaningful participation in terms of taking part, giving something and being someone. A model was constructed based on the experiences, which includes personal and environmental factors that, in interaction, may influence participation: participation is influenced by the process of recovery, support and treatment, the environment and society and communication and interaction. The study resulted in an overview of actions like continual care that may improve the participation of people with ABI.