Conceptualization of Participation: A Qualitative Synthesis of Brain Injury Stakeholder Perspectives.
Caitlin Rajala, Camden Waterhouse, Emily Evans and 5 others
PMID 36188936WHAT IT FOUND
People with brain injury define participation by choice, contribution, and feeling included, not just by completing tasks.
Social relationships and leisure were cited far more often than work. These subjective elements often do not fit standard impairment-focused outcome measures.
Key findings
01Participants defined participation through essential elements including being included, choice and control, and the ability to contribute, rather than solely by functional independence.
02Social interactions and relationships were the most frequently cited domain of participation, followed by leisure, while work was referenced far less often.
03Key concepts like self-determination and advocacy could not be easily linked to standard ICF Core Sets for stroke or TBI, indicating a gap between patient definitions of participation and clinical measurement frameworks.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The synthesis included only six studies, limiting the breadth of perspectives. Most data came from stroke populations, so findings may not fully represent people with traumatic brain injury. The review was restricted to English-language studies, likely reflecting Western cultural values regarding participation. Qualitative synthesis relies on researcher interpretation, and abstract concepts were difficult to link to the ICF framework.
Declared interests
The research was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. The authors declared no commercial or financial conflicts of interest.
The easy way to misread this
Do not interpret the lack of fit with ICF Core Sets as a failure of the ICF or a flaw in the patients' understanding. It indicates that current standardized measures may miss the subjective elements of participation, such as choice and contribution, that patients value most. Do not assume that a patient who is physically independent is participating in a way they find meaningful.