Living with traumatic brain injury in a rural setting: supports and barriers across the continuum of care

Purpose: Traumatic brain injury (TBI) is prevalent in Kentucky and comes with a high cost in care and quality of life for individuals and caregivers affected. Many people living with the condition of TBI have unmet needs. Research among people living with TBI in rural areas is limited. The purposes of this study were to (1) increase understanding of the lived experience of people with TBI and caregivers in rural regions of Kentucky across the continuum of their care and (2) provide their perspectives on barriers and facilitators of optimal function and well-being. Methods: A qualitative descriptive interview study was conducted by a multidisciplinary team. Content analysis was completed with data-derived coding and iterative modifications to analysis, coalescing codes into categories and themes. Results: Thirteen people with TBI and six caregivers participated in the interview. Categories that emerged in analysis included the experiences under each locus of care; themes included relationships, functional competence, and participation in meaningful activity. Conclusion: Relationships represented both barriers and facilitators of well-being. Major unmet needs persisted in terms of medical problems, support for caregivers, community linkages, and participation in meaningful activities. Recommendations are made regarding avenues for addressing unmet needs.Implications for Rehabilitation People with TBI are living with chronic conditions and may need intensive rehabilitation after the injury and intermittent rehabilitation throughout life to develop and maintain functional competence. Rehabilitation providers need to understand the unique aspects of the rural home environment to which a patient will be discharged (e.g., mountainous terrain, lack of transportation, dimensions of home) and communicate with rural providers directly. Rehabilitation providers need additional focus on improving patient’s and caregiver’s abilities to advocate for themselves. Patients with TBI should be referred to vocational rehabilitation as soon as possible to make the transition to meaningful activity at home more of a possibility.