Engaging Individuals with Neurological Conditions and Caregivers in Rural Communities in a Health Research Team.

BACKGROUND: In rural communities, individuals living with neurological conditions, such as stroke, traumatic brain injury (TBI), or spinal cord injury (SCI) and their caregivers face limited resources, decreased support, and a lack of access to health information and research. Little information exists on how to engage these individuals in community-based research. OBJECTIVES: We sought to 1) determine the most effective method(s) for engaging individuals with stroke, TBI, or SCI, and their caregivers in rural communities; 2) determine the perceived value of patient-centered outcomes research (PCOR) in their health care and clinical decision making; 3) to determine their health needs and related research priorities; and 4) to establish a community-based research team to support the development of relevant questions. METHODS: Targeting a population of individuals with stroke, TBI, or SCI and their caregivers, as well as health care providers, 17 in-depth interviews were conducted, followed by seven focus groups, and two half-day meetings to establish a community-based research team and develop a research agenda. RESULTS: Recruitment through trusted community networks was found to be the most beneficial for engaging participants. Participants placed high value on health research, but reported difficulties in accessing health information and in finding the information most relevant to them. A research team was established and research priorities centered on access to care and education. CONCLUSIONS: It is imperative to involve those living with a diagnosis or in an under-resourced community to develop the solutions that will work for them in their settings.

Care Coordination for Community Transitions for Individuals Post-stroke Returning to Low-Resource Rural Communities.

High rates of hospital readmissions have been shown within 12 months post-discharge from inpatient rehabilitation following stroke. Multiple studies coupled with our previous work indicate a need for care support for stroke survivors' transitions to the community. The Kentucky Care Coordination for Community Transitions (KC3T) program was developed to provide access to medical, social, and environmental services to support community transitions for individuals with neurological conditions and their caregivers living in Kentucky. This program assessment was conducted to determine the effectiveness of using a specially trained community health worker to support community transitions. Thirty acute stroke survivors were enrolled in this program between July 2015 and May 2016. Data collection included: incidence of comorbidities; access to healthcare, insurance, medical equipment (DME), and medications; type of follow-up education provided; and number of 30-day rehospitalizations and Emergency Department (ED) visits. Participants required navigation in their home and community transition with support in: patient-provider communication; insurance support; accessing follow-up care; education on managing chronic health conditions, the stroke process, transfers and mobility; and accessing DME and essential medications. There were no 30-day ED visits for the KC3T participants and only one 30-day hospital readmission, which was not stroke-related. Individuals returning to rural communities following a stroke require, but often don't receive, follow-up education on chronic disease management, support in navigating the healthcare system and accessing essential resources. KC3T's navigator program appears to be effective in supporting the community transitions of individuals poststroke.

"A Lot of Things Passed Me by": Rural Stroke Survivors' and Caregivers' Experience of Receiving Education From Health Care Providers.

PURPOSE: The purpose of this study is to examine rural Appalachian Kentucky stroke survivors' and caregivers' experiences of receiving education from health care providers with the long-term goal of optimizing educational interactions and interventions for an underserved population. METHODS: An interprofessional research team, representing nursing, occupational therapy, physical therapy, and speech language pathology, conducted a qualitative descriptive study involving semistructured interviews with 13 stroke survivors and 12 caregivers. Qualitative content analysis included predetermined and emerging coding. This article presents an in-depth analysis of a subset of data from the coding scheme of a larger study that examined the overall experience of stroke for participants. FINDINGS: Findings are presented within a developing model of patient and caregiver education constructs including providers and receivers of education and the content, timing, and delivery of information. CONCLUSIONS: Understanding the experience of receiving education for survivors and caregivers will help practitioners provide the right education, to the right people, at the right time, and in the right way to better support underserved groups. Improving patient and caregiver education is paramount to supporting health behavior change to optimize life poststroke and prevent future strokes. Our results suggest the need for improved access to educational providers, proactive identification of informational needs by providers, greater inclusion of caregivers in education, enhanced communication with information provision, and education from multiple providers using multiple delivery methods at multiple time points.

"Living with a ball and chain": the experience of stroke for individuals and their caregivers in rural Appalachian Kentucky.

PURPOSE: Individuals in rural Appalachian Kentucky face health disparities and are at increased risk for negative health outcomes and poor quality of life secondary to stroke. The purpose of this study is to describe the experience of stroke for survivors and their caregivers in this region. A description of their experiences is paramount to developing tailored interventions and ultimately improving health care and support. METHODS: An interprofessional research team used a qualitative descriptive study design and interviewed 13 individuals with stroke and 12 caregivers, representing 10 rural Appalachian Kentucky counties. The transcripts were analyzed using qualitative content analysis. FINDINGS: A descriptive summary of the participants' experience of stroke is presented within the following structure: (1) Stroke onset, (2) Transition through the health care continuum (including acute care, inpatient rehabilitation, and community-based rehabilitation), and (3) Reintegration into life and rural communities. CONCLUSIONS: The findings provide insight for rural health care providers and community leaders to begin to understand the experience of stroke in terms of stroke onset, transition through the health care continuum, return to home, and community reintegration. An understanding of these experiences may lead to discussions of how to improve service provision, facilitate reintegration, support positive health outcomes, and improve quality of life for stroke survivors and their caregivers. The findings also indicate areas in need of future research including investigation of the effects of support groups, local health navigators to improve access to information and services, involvement of faith communities, proactive screening for management of mental health needs, and caregiver respite services.