Sustaining Home Palliative Care for Patients with Heart Failure (HF) and Their Family Caregivers in Rural Appalachia: A Mixed Methods Randomized Clinical Trial (RCT)

Project Summary 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, end-of-life palliative care (EOLPC), and have extreme

inequities in health. 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 rural disparities in the lack of access to health care which the faith-based nurses and rural volunteers visiting neighbors address. The intervention components are designed to address several Appalachian social

determinants of health (SDoH) disparities, such as reducing costs by nurses enabling direct access to health services, clearly illustrated HF home care guides for low literacy, 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 (92 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 Nurse 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 equity by providing access to health services and

addressing SDoH disparities in underrepresented Appalachia. Designing and testing practical, sustainable approaches using the available rural resources to address a prevalent, devastating disease, family EOLPC 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, EOLPC and SDoH disparities of the 26.3 million people living across Appalachia. The long-term impact will be pragmatic strategies for other rural Appalachian states.