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

Abstract

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. 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. 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. 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. 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.