The proposed study expands the body of knowledge regarding methods to address the needs of family care- givers (FCGs) transitioning from hospital-based palliative care to homes in rural, medically-underserved areas. Caregiving for individuals with life-limiting illnesses frequently causes caregiver burden, depression, decreased coping skills and quality of life. Often, FCGs are confronted by challenges such as inadequate caregiving knowledge and skills, limited support, demanding family circumstances, and limited time for themselves. Alt- hough FCGs often have substantial personal health needs equal to or greater than the patients' needs, the FCGs' needs have received limited attention. It is, therefore, critically important that interventions be explored that link proven strategies in an approach to implementing transitional palliative care (TPC) in a way that in- creases communication and support to FCGs. The purpose of this study is to evaluate a novel, nurse-led, technology-enhanced, theory-based care model of transitional palliative care (TPC) for FCGs living in rural, medically underserved areas. A randomized controlled clinical trial design will be used to address the following specific aims: (1) Evaluate the effect of technology- enhanced TPC for FCGs on caregiving preparedness (Preparedness for Caregiving Scale), communication with clinicians (Communication with Physicians Scale), and satisfaction with care (PACIC); (2) Evaluate the effect of technology-enhanced TPC for FCGs' quality of life (Caregiver Quality of Life Scale-Cancer), burden (Bakas Caregiving Outcomes Scale-Revised), coping skills (Post-Discharge Coping Difficulty Scale), and de- pression (CESD-10); and (3) Examine the effect of technology-enhanced TPC for FCGs on healthcare costs. An intensive 8 week transitional care intervention, TPC for FCGs focuses on the needs of FCGs of palliative care patients. In this study, 240 FCGs will be randomized to either the experimental or usual care control groups. The intervention includes in-hospital and in-home components. Because the FCGs and care recipients live in rural settings, the in-home component will be conducted using virtual visits. Outcomes will be evaluated at 2 weeks and 8 weeks from baseline (Aims 1 & 2) using a response-feature analysis as our primary approach to analyzing these repeated measures data. Both descriptive and multivariable-adjusted measures of costs for 6 months post-enrollment from a societal perspective will be analyzed (Aim 3). This study, is: (1) aligned with NINR's strategic goal to develop and test strategies to minimize the physical and psychological burdens on FCGs' health, particularly as the care recipients near the end of their life; (2) innova- tive because it represents a substantive departure from current transitional care approaches that are limited to in-person interactions in both the hospital and home; and (3) significant because it addresses the rapidly in- creasing need for TPC services to medically underserved rural areas.
The proposed research is relevant to public health because the intervention represents an innovation that addresses a gap in palliative care service delivery. The transitional palliative care intervention for family caregivers is designed to improve the transition from hospital to home for families caring for their loved ones living in rural, medically underserved areas. This study aligns with the National Institute of Nursing Research because the proposed study evaluates a new intervention for family caregivers to maintain their own health, as well as to continue to provide the best care to their loved ones with life-limiting illnesses in the home setting.
