Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers especially during severe symptoms in the long-lasting end stage. Families are rarely prepared for HF's devastating consequences. West Virginia (WV), a large rural Appalachian region, has the highest HF death rates in the U.S. NIH designated Appalachia a high priority research area due to poor access to healthcare. Thus, there is a need to investigate our new family end-of-life palliative care (EOLPC) intervention (FamPALcare), where our nurses coach family-managed end-stage HF care at home in Appalachia. The FamPALcare intervention will be implemented by the West Virginia University School of Nursing (WVU SON) advanced practice faculty experienced in EOLPC in Appalachia and in long-term collaboration with rural community leaders. These nurses coach families in managing the frequent distressful end-of-life (EOL) HF symptoms and engage them in culturally sensitive discussions about selecting HF specific treatment options according to their EOL preferences. This research project will provide an opportunity to engage undergraduate and graduate students in the WVU SON in a guided clinical research experience.
Specific Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for end-stage HF in rural WV using a small low-risk randomized controlled trial (RCT).
Specific Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials.
Specific Aim 3 is to evaluate student research engagement in the FamPALcare intervention in rural WV. We will collect student reports of research engagement and their future career plans and research activities. This proposal addresses the NIH Academic Research Enhancement Award (AREA) priorities PA-18-343 for low- risk RCT to: (1) support the PI's independent meritorious research in the underserved rural Appalachian region; (2) engage undergraduate and graduate nursing students in research; and (3) strengthen the research environment of the WVU SON, which has not been a major recipient of NIH support. The outcomes of this R15 will result in new knowledge on coaching techniques for EOLPC and culturally sensitive approaches to home EOL rural care. The long-term impact will be the strengthening of the SON research environment, engagement of undergraduate and graduate students in clinical research, and collection of data on the implementation and research procedures for a subsequent large clinical trial of the FamPALcare intervention.
This project uses a low-risk randomized clinical trial to: (1) support the PI's independent meritorious research in the underserved rural Appalachian region; (2) engage undergraduate and graduate nursing students in research; and (3) strengthen the research environment of the West Virginia School of Nursing, which has not been a major recipient of NIH support. This research will result in new scientific knowledge on rural home end- of-life palliative care and coaching strategies that support family members.
