Primary objective: To gather information about brain injury (BI) survivors' long-term healthcare needs, quality, barriers and facilitators.
Research design: Qualitative content analysis of data gathered in focus groups using semi-structured interviews.
Methods: Forty-four community-dwelling adults participated at two clinical research centres in Seattle, Washington and New York, New York. Participants were asked open-ended questions about their experiences with healthcare in the community with regard to care needs, utilization, access, barriers and facilitators to health management.
Results: Central themes emerged across three categories: 1) barriers to healthcare access/utilization, 2) facilitators to healthcare access/utilization, and 3) suggestions for improving healthcare after BI. The importance of communication as both a facilitator and barrier to care was mentioned by most participants. Compensatory strategies and external tools were identified as key facilitators of medical self-management. Finally, improving clinicians' knowledge about BI emerged as a potential solution to address health needs of individuals with chronic BI.
Conclusions: Additional efforts need to be made to improve access to appropriate healthcare and increase the ability for individuals to successfully navigate the healthcare system. Findings suggest several specific, low-cost modifications to healthcare delivery and strategies for improving medical self-management that can maximize long-term health maintenance for BI survivors.
Keywords: Traumatic brain injury; acquired brain injury; chronic health; qualitative research.