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

Abstract

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.

Geographical disparity and traumatic brain injury in America: Rural areas suffer poorer outcomes

“…There is evidence that even within the United States, unequal distribution of healthcare facilities and resources exists. [5252638] Similarly, adoption of evidence-based guidelines for TBI is not uniform across the U.S., with resource-limited, rural areas demonstrating lower levels of adherence than their comparatively wealthier urban counterparts. [8926] Taken together, the lack of evidence for complete clinical protocols and the lack of evidence specific to low-resource environments render currently available evidence-based guidelines of questionable generalizability in both LMICs and rural areas of HICs.…”

The Residential Status of Working Age Adults Following Severe Traumatic Brain Injury

“…Such connections could offer support to enable people with severe TBI to live at a private residence (Baker et al, 2016). Alternatively, it is also possible that people living in rural areas were disadvantaged by a lack of accommodation options, as compared to their metropolitan counterparts (Harrison et al, 2016). Additionally, people living in rural settings could have lacked care coordination from health professionals to navigate health and disability systems in rural areas over time needed to access alterative accommodation (Solovieva & Walls, 2014).…”

On making disability in rural places more visible: Challenges and opportunities [Introduction to a special issue]

“…There are many different types of disabilitymental and physical, but with a huge array of different and often entangled conditions, bodily states and psychological conditions -and so caution must be expressed about attempts at generalisation. Nonetheless, to return to the first vignette, the blog exchange, we can propose that missustoad and Lori B articulate perhaps the most obvious discernible issues for the rural geographer interested in disability: namely, the limited availability or accessibility of provisions which can potentially assist a disabled person in treating their impairment (health and rehabilitation facilities), managing it (social and welfare services) or contributing in other ways (everything from training units to the crucial matter of suitable transportation) (Milligan, 1996(Milligan, , 1999Iezzoni et al, 2006;Turpin et al, 2007;Rooy et al, 2012;Wark, 2013;Harrison et al, 2016). Their posts largely imply a bad rural with respect to disability: an unhelpful, unforgiving rural that is something of a disability desert or trap.…”