Sustaining Home Palliative Care for Patients with Heart Failure (HF) and Their Family Caregivers in Rural Appalachia: A Mixed Methods Randomized Clinical Trial (RCT) - Heart failure (HF) is the leading cause of mortality, morbidity, and rehospitalizations in Appalachia. Rural areas have the highest HF mortality rates. West Virginia (WV), the only state totally within the Appalachian region, has the highest HF death rate in the U.S. (32.6 per 100,000; the substantial deaths in those over 65 years). HF is devastating for patients and their family caregivers, especially during the HF end stages. Families are unprepared for this deteriorating condition, the home caregiving burdens, and the fear of a painful death. Further, rural Appalachians lack access to health services and end-of-life palliative care. The aim of this randomized controlled trial (RCT) is to test the integrated nurse-led intervention bundle of 1) HF-FamPALhomeCARE, 2) Visiting Neighbors supporting functional health, and 3) Appalachia Faith-based nurses providing comforting palliative care. The preliminary studies verified the bundle components. This RCT is guided by the social support conceptual theory consistent with Appalachian culture. This intervention bundle addresses the lack of access to health care in rural settings which the faith-based nurses and rural volunteers visiting neighbors address. The intervention components are designed to address several Appalachian social determinants of health, e.g., economic hardship such as reducing costs by nurses enabling direct access to health services, clearly illustrate HF home care guides, and inspections for safe housing for older adults. This mixed methods RCT will address Primary Aims (1 & 2), testing the outcomes of patients with HF and family caregivers (N = 104 dyads) managing home supportive EOLPC in rural WV. Secondary Aim (3) is to assess the bundled intervention helpfulness, cost, and plans for maintaining the sustainability of our visiting neighbor volunteers, and the faith nurses of rural WV. Descriptive measures, group comparisons, intervention costs, and focus group discussions will be reported. The qualitative results will be compared to the social support framework, quantitative results and to the results of the Aim 3a helpfulness ratings to identify any other facilitators or barriers to sustainability. This R01 study supports research to improve rural health care by providing access to health services and addressing social determinants of health impact in Appalachia. Designing and testing practical, sustainable approaches using the available rural resources to address a prevalent, devastating disease, family home care preferences, older adults’ functional health, HF home caregiving skills, and providing social support. Engaging rural stakeholders in recruitment, implementation, and designing sustainability plans can result in continuing research on the health of the million people living across Appalachia. The long-term impact will be pragmatic strategies for other rural Appalachian states.
