Kentuckians living in rural Appalachia suffer a disproportionate burden of negative health disparities, which is especially evident for persons with neurological conditions (spinal cord injury (SCI) traumatic brain injury (TBI) and stroke). Recently, the Kentucky Appalachian Rural Rehabilitation Network (KARRN) was established as a collaboration among the academic healthcare center (AHC), community healthcare providers and community partners to identify, develop and disseminate information and strategies to improve outcomes and quality of life for these individuals. However, essential infrastructure is needed to capitalize on the potential of KARRN to provide education and training and to effectively conduct translational research. We propose to expand the capacity of KARRN through accomplishment of the following specific aims:
Aim 1 : Expand the linkage among essential community partnerships to facilitate new research, translate existing knowledge, and disseminate information. Community Research Associates (CRAs) and community liaisons will be identified, videoconferencing capacity among partners will be expanded and the KARRN website will be expanded.
Aim 2 : Identify supports and barriers across the continuum of care for people with SCI, stroke and TBI living in rural Appalachian regions. Focus groups and surveys, and in-depth asset mapping of available resources will be conducted.
Aim 3 : Promote bidirectional education between the community and AHC to facilitate new research, translate existing knowledge, and disseminate information. CRAs and community partners will be trained in research methodology and AHC members will be educated to clearly understand community needs.
Aim 4 : Develop central databases for identification and tracking of clients as well as collection and analysis of research data. A centralized registry will be developed to follow clients as they transition among healthcare environments and through community integration. A research database for the KARRN will be developed.
Aim 5 : Develop research agenda for the KARRN. Short-term and long-term research agenda will be set with funding for pilot studies made available to community partners. The proposed work will expand the capacity of the KARRN allowing longitudinal study across the continuum of care and community integration with the goal of reducing disability and increasing participation and quality of life in rural Appalachia. AHC and community partnerships will be strengthened and will link resources based on the individuals'and families'needs. The proposed infrastructure will enhance communication throughout the entire continuum of care, inform the KARRN research agenda, and facilitate the dissemination of new knowledge into community practice by linking basic scientists, clinical researchers and community-based researchers. Once established, this infrastructure can easily be expanded as a base for similar work for other populations.
This project seeks to promote the expansion of the Kentucky Appalachian Rural Rehabilitation Network, which is focused on research and education to improve healthcare and community integration of individuals with neurological conditions living in Appalachian rural Kentucky.
| Harrison, Anne L; Hunter, Elizabeth G; Thomas, Heather et al. (2017) Living with traumatic brain injury in a rural setting: supports and barriers across the continuum of care. Disabil Rehabil 39:2071-2080 |
| Danzl, Megan M; Harrison, Anne; Hunter, Elizabeth G et al. (2016) ""A Lot of Things Passed Me by"": Rural Stroke Survivors' and Caregivers' Experience of Receiving Education From Health Care Providers. J Rural Health 32:13-24 |
| Danzl, Megan M; Hunter, Elizabeth G; Campbell, Sarah et al. (2013) ""Living with a ball and chain"": the experience of stroke for individuals and their caregivers in rural Appalachian Kentucky. J Rural Health 29:368-82 |
