Qualitative Examination of Chronic Care Needs of Individuals With Traumatic Brain Injury

Objective

To examine the chronic care needs of patients with traumatic brain injury (TBI) and development of a Chronic Care Model for TBI.

Design

Focus groups to examine unmet needs, priorities for long-term support, and recommendations for chronic care management of TBI. We used thematic analysis to generate themes describing key concepts and synthesized needs to support chronic care management of TBI.

Setting

Brain injury support groups, community settings, and Zoom.

Participants

47 participants: people with chronic TBI (>6mo post-TBI; n=25), their family members (n=16), and TBI community service providers (n=6).

Interventions

Not applicable.

Main Outcome Measures

Not applicable.

Results

We found that people with TBI, their family members, and their providers are all unprepared to manage TBI as a chronic condition. Although participants identified numerous valuable services within their communities, there are extensive barriers to accessing them. There are also unmet needs for community and social participation, mental health, and family support.

Conclusions

To successfully implement a chronic care approach to TBI management, we must reduce the barriers to accessing services and resources for people with TBI. We must implement stronger initial brain injury education practices, develop structures to support the transition from health systems to community levels of care and provide sustained access to therapy services, family-caregiver support, and employment advocacy and support.