Patient perspectives on quality and access to healthcare after brain injury

ABSTRACT

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

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This work was supported by Grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant Numbers 90DP0038-02-00 and 90DP0031-01-00), and by a Grant from the National Institutes of Health, National Institute of Child Health and Development (Grant Number K01HD074651–01A1).