Purpose: To gain knowledge of the early phase post-injury experiences related to choice and control for individuals living with acquired brain injury or spinal cord injury, as well as their caregivers.
Materials and methods: A qualitative study was conducted to understand the experiences of individuals with acquired brain injury or spinal cord injury and their caregivers in the early phase post-injury, focusing on the aspects of choice and control. Nine individuals with acquired brain injury or spinal cord injury and four of their caregivers participated in semi-structured in-depth interviews, and the data was analysed using thematic analysis.
Results: Four themes emerged: (1) Passenger in the system, (2) Can't do it alone, (3) I want to improve, and (4) A new normal. A sense of empowerment or vulnerability may be influenced by participants' experiences of choice and control.
Conclusion: The study offers insights for healthcare professionals aiming to enhance the sense of choice and control for individuals living with acquired brain injury or spinal cord injury. An approach involving shared control and promoting choice, agency, and empowerment may positively influence post-injury experiences for these individuals.
Keywords: Choice; choice behaviour; control; neurological rehabilitation; patient participation; recovery of function.
While in rehabilitation, people with ABI or SCI may feel like a passenger in the system and the need to act passively.Regaining control assists people to feel calmer and more of a unique individual.Agency, control, and choice are central to experiences of empowerment or vulnerabilityRehabilitation staff who collaborate and share power and control may reduce psychological distress in their clients and promote a sense of agency.