Research Priorities for Optimizing Long Term Community Integration after Brain Injury

For which topic were research priorities identified?

long-term community integration after brain injury

In which location was the research priority setting conducted?

North America - Canada

Why was it conducted at all?

The prevalence of disablement following traumatic brain injury (TBI) is well known, and of increasing concern as we now recognize that several sequelae can persist and worsen in the chronic stages.3-5 One longitudinal study found that in the first 5 years following injury 39% of individuals had deteriorated in global functioning, 55% were unemployed, and about 30% were not independent in performing activities of daily living. Indeed, TBI has been described as a chronic condition, with a potential for lifelong activity limitations and participation restrictions. Moreover, level of function is not static and can deteriorate with time post injury. Decline in functioning has been attributed to psychosocial factors, co-morbidities, aging, or to neurodegenerative processes. For example, atrophy in at least one brain region in the first 2 years post injury was observed in 95% of participants in one study. Because TBI is now recognized as a chronic condition, and in the context of limited research dollars, researchers and funding agencies agree that setting priorities with the aim of maximizing well-being for survivors and their families is critical.

What was the objective?

to formulate research priorities with the most potential for improving the long-term community integration of individuals with TBI and their family caregivers

What was the outcome?

a list of 3 research areas

How long did the research prioritization take?

2 days

Which methods were used to identify research priorities?


How were the priorities for research identified exactly?

Step 1: workshop: series of presentations illustrating ongoing research on TBI in Canada, small group discussions using the World Café methodology, participants were asked to discuss: "If we were writing a letter to someone in government about the current realities facing individuals living with TBI, what should go in that letter? In the next 2 years, what steps should be taken so that individuals with TBI could have more optimal community integration? Five years from now, you reflect back and think that ... has really improved the lives of those living with TBI?", presentation of major ideas, town-hall-style discussions in which emerging ideas were grouped together into broad themes, themes recorded on flipcharts, participants then given six stickers and asked to place them on themes they perceived were most important. Step 2: data processing: thematic analysis. Step 3: review of ideas, grouping similar themes together, discussing ideas for grouping, collective decision on the three most important research priorities

Which stakeholders took part?

Researchers, clinicians, representatives from brain injury associations, individuals with TBI, and caregivers. 54 participants: occupational therapy (n=15), psychology (n=13), physical medicine and rehabilitation (n=3), medicine (n=4), service delivery/administration (n=3), computer science (n=3), speech and language pathology (n=3), biomechanics (n=2), case management (n=2), epidemiology (n=2), neuroscience (n=2), nursing (n=2), physical therapy (n=2), and social work (n=1) and 2 representatives from brain injury associations.

How were stakeholders recruited?

A snowball sampling was used to identify a diverse group of participants (N=54) with broad expertise. Researchers who were part of existing inter-provincial TBI research teams in Ontario and Quebec were first invited, and they invited others from their networks including researchers, persons living with TBI, and persons working for community based TBI organizations.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.