Johanne Eliacin1,2,3,4, Sarah Fortney1,2, Nicholas A Rattray1,5, Jacob Kean6,7. 1. a Department of Health Services Research and Development , Center for Health Information and Communication, Richard L. Roudebush Department of Veterans Affairs Medical Center , Indianapolis , IN , USA. 2. b Departments of Psychology , Indiana University Purdue University , Indianapolis , IN , USA. 3. c Center for Health Services Research , Regenstrief Institute, Inc . Indianapolis , IN , USA. 4. d Act Center of Indiana , Indianapolis , IN , USA. 5. e Department of Anthropology , Indiana University Purdue University , Indianapolis , IN , USA. 6. f Department of Health Services Research and Development , Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System , Salt Lake City , UT , USA. 7. g Department of Population Health Sciences and Department of Communication Sciences and Disorders , University of Utah School of Medicine , Salt Lake City , UT , USA.
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.
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.
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Keywords:
Traumatic brain injury; access to care; caregivers; health services delivery; qualitative research