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.
