Caring for patients with cancer is not just the domain of doctors and nurses; they rely on an informal network that includes family and friends. With funding from The Duke Endowment, UNC Lineberger Comprehensive Cancer Center’s Erin Kent, PhD, and Eliza (Leeza) Park, MD, are co-directing a project to help alleviate the burden this informal care places on caregivers, especially those in rural areas.
Nearly a half million people in North Carolina live with a cancer diagnosis, and the effects of the disease are far wider. Patients with cancer rely on an informal network of caregivers that includes family and friends as they navigate their illness and treatment. This network provides vital emotional support, help managing medications and rides to appointments, but this care can come at a profound cost for the caregivers, who often experience higher rates of depression and anxiety than patients they care for. The demands in rural communities are even greater, with higher cancer rates, longer distances and lower use of professional support services. Threats to caregivers’ physical, mental and financial well-being, in turn, lead to worse outcomes for the cancer patients they support.
Kent and Park aim to improve support for rural caregivers by adapting an existing program to suit their unique needs. The Electronic Social Network Assessment program (eSNAP) consists of an eight-week program and an electronic tool. Training helps caregivers identify and organize their existing social network and formal resources available to help with their support needs, and the tool helps them organize and access information about the support they need, through a web-based application.
“Having a tool that’s specifically for caregivers legitimizes their role in the patient’s treatment and recovery,” said Kent, associate professor of health policy and management at the Gillings School. “It provides an avenue for them to receive the support they deserve and demonstrates how important their role is for the health care delivery team. They’re not invisible; they’re fundamentally connected to the wellbeing of the patient.”
The study will be co-directed by Kent, who also serves as a member of the UNC Lineberger’s Cancer Prevention and Control Program, and Park, assistant professor of psychiatry and medicine at the UNC School of Medicine and deputy director of clinical operations for UNC Lineberger’s Comprehensive Cancer Support Program.
Previous studies show that caregivers’ physical and mental health suffers when their needs are left unmet, and they are less able to attend to their caregiving roles. This in turn leads to lower quality of care and higher mortality risk for patients with cancer and greater overall strain on health systems. Unfortunately, few support programs actually reach the rural communities where need is greatest. This lack of support exacerbates the disparities in cancer outcomes between people living in rural and nonrural areas in the United States. Further, given that demographic trends indicate that fewer family members will be available for caregiver roles, this project responds to a coming crisis in cancer care.
During the three-year project, the researchers will assess the needs of rural caregivers, identify barriers and facilitators to supporting these needs, and adapt the existing eSNAP tool to the rural context. In Phase 1 of the project, conducted during its first year, the research team will learn more about the unique needs and preferences of rural cancer caregivers and collect feedback on the existing eSNAP activities and tool through questionnaires and interviews with 20 rural cancer caregivers. Six focus group discussions with caregivers, clinicians and care navigators will identify specific barriers and facilitators to implementing the program in rural settings, and the team will adapt the eSNAP tool based on feedback. Phase 2 of the project will involve testing the tool with 180 caregivers over the following two years.
This project is made possible by a $590,000 grant from The Duke Endowment.
“We are incredibly grateful that The Duke Endowment recognizes the importance of family-centered care,” said Park. “This grant will allow us to meet a true clinical need in a creative and sustainable way.”
Based in Charlotte and established in 1924 by industrialist and philanthropist James B. Duke, The Duke Endowment is a private foundation that strengthens communities in North Carolina and South Carolina by nurturing children, promoting health, educating minds and enriching spirits. Since its founding, it has distributed more than $4 billion in grants. The Endowment shares a name with Duke University and Duke Energy, but all are separate organizations.
—UNC Gillings School of Global Public Health