Access to health services for moderate to severe TBI in Indiana: patient and caregiver perspectives

ABSTRACT

Objective: We examined patient and caregiver experiences of health services for moderate to severe traumatic brain injury (TBI) in Indiana. The objective was to provide an understanding of their lived experiences and to inform policies and practices for health services delivery for TBI.

Methods: We conducted qualitative, semi-structured interviews with 62 participants (34 patients and 28 caregivers). Data analysis was guided by constructive grounded theory.

Results: Three interrelated themes emerged from the data and characterised participants’ experiences accessing health services for TBI: 1) inadequate access to health services; 2) unavailability of specialised, age-appropriate, and long-term health services; and 3) transportation barriers to health services that limit access to care and amplify rural health disparities for patients.

Conclusion: Our findings identified significant barriers to health services for patients with TBI at different points in the care continuum. Gaps in health services and barriers to care transcend geographical boundaries within the state. We suggest ways to improve access to TBI care including: 1) decentralisation of trauma centers; 2) development of neurobehavioural and age-appropriate long-term care facilities; 3) increased workforce with expertise in TBI treatment; and 4) improved access to transportation services for patients with a TBI.

KEYWORDS:

• Traumatic brain injury
• qualitative research
• access to care
• health services delivery
• caregivers

Acknowledgments

We would like to thank Callie Zaborenko, the Rehabilitation Hospital of Indiana (RHI), the study participants as well as the community organisations and TBI support groups who supported this project and made it possible.

Declaration of Interest

The authors report no declarations of interest.

Additional information

Funding

This work was supported by the Indiana Spinal Cord and Brain Injury Research (ISCBIR) and the Indiana State Department of Health. Dr. Kean also received support from the VA Rehabilitation Research and Development Career Development Award [IK2RX000879].