Patient Experiences of and Priorities for Traumatic Brain Injury Health Care in a US Level 1 Trauma Center: A Qualitative Study

Abstract

Objective

To learn patient perspectives about health care in a level I trauma center for traumatic brain injury (TBI) that inform the design of better TBI systems of care.

Patients and Methods

This was a community-engaged qualitative study that enrolled 42 individuals who had been either treated and discharged home from a level I trauma center emergency department (n=21, 50%) or who were admitted to the trauma center inpatient units (n=21, 50%). Interviews, conducted from August 12, 2022, to September 22, 2023, inquired about injury, post-acute and after post-acute care, clinical and community supports received, unexpected experiences, and things that helped or hurt access to care and outcome. Thematic analyses were completed in October 2024.

Results

Four themes emerged. Participants conveyed a desire to be informed and engaged in their health and health care, reporting deficiencies, for example, in health care providers’ explanation of their TBI diagnosis, communication about in-hospital care, and discharge instructions. They reported varied difficulties navigating the health care system after discharge, resulting in no or insufficient TBI follow-up care. Third, responses illuminated the importance of social risk and resilience factors, with particularly important roles of financial strain and social support. Fourth, participants conveyed unique feelings of vulnerability and uncertainty about TBI resulting from its variable, uncertain course.

Conclusion

The findings align with and expand on findings from quantitative studies of common gaps in TBI care, whereas illuminating distinct targets for ongoing national and international efforts to develop more coordinated, patient-centered systems of care.