Patient perspectives on quality and access to healthcare after brain injury

Brain Inj. 2018;32(4):431-441. doi: 10.1080/02699052.2018.1429024. Epub 2018 Feb 1.


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.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Adult
  • Aged
  • Brain Injuries / psychology*
  • Brain Injuries / therapy*
  • Female
  • Focus Groups / statistics & numerical data
  • Health Services Accessibility / statistics & numerical data*
  • Humans
  • Interview, Psychological
  • Male
  • Middle Aged
  • Patient Acceptance of Health Care*
  • Young Adult