Caregivers in the Crosshairs
When professor Paula Sherwood thinks of caregiver stress, she thinks of Nate’s mom.
The 21-year-old Michigan man had been diagnosed with a glioblastoma multiforme, a fast-growing, aggressive brain tumor, and Sherwood, the nurse supporting Nate’s and his family’s care, watched his rapid decline amid the agony of his parents. They weren’t the first family she’d cared for through a terminal brain cancer diagnosis, but the wrenching case proved a turning point.
“I absolutely couldn’t get over the fact that there was very little we could do to help him,” Sherwood remembered, “and very little we could do to help his mom and dad, either. It was awful. With this family, though, I realized that helping caregivers was a space where nurses could truly make a difference. So, I began a PhD, bound and determined to help people exactly like them, and other neuro-oncology caregivers I’d worked with. Since then, it’s become my life’s work.”
How Caregivers Suffer
Of the nation’s more than 87 million caregivers, more than six million care for a family member with cancer. While cancer strikes the patient, their otherwise healthy caregivers are concurrently debilitated, becoming vulnerable to crushing stress, depression, and anxiety and the cascade of ill effects those emotions trigger.
Sherwood calls caring for a loved one with cancer “the bear that doesn’t go away.”
“With an acute stressor, the ‘bear’ is the short-term shock, which causes hormones that pump out molecules like cortisol to help you fight the stressor, but then things in the body return to normal once the heightened state is over,” she explained. “As a family caregiver, though, the initial diagnosis is only the first step of that stress cascade. And the threats keep coming.”
Treatments and their side effects. Suffering and personality changes. Financial and household responsibility shifts. Mortality itself.
Caregivers who continue in that elevated “fight or flight” stage get literally worn down. The wear might mean they don’t respond to vaccines as well and experience depressed immune function. They get more colds and flus, have higher blood pressure, increased risk of heart disease, infection, and tend to experience higher rates of acid reflux and pain. They also may be more likely to die.
Pushing Caregiver Interventions Forward Through Collaborations
Sherwood, who’s earned more than $8 million in NIH grants for her research with neuro-oncology caregivers, came to UVA in 2024 to push the science of caregiver support forward. She’s currently partnering with scientists with similar interests—including UVA Cancer Center neuro-oncologist Camilio Fadul and population sciences scholar Roger Anderson, nurse and research scientists Virginia LeBaron and Kathleen Porter, and social psychologist Jennifer MacCormack—to collaborate and deepen understanding of neuro-oncology caregiving and how to create interventions that alleviate caregiver stress.
With a trio of new grants, Sherwood hopes to better understand how emotional distress affects physical health, including one study that evaluates cortisol levels, a byproduct of mental stress, in hair samples.
There’s a metaphor in the collaborations, too, Sherwood said.
“When people share common goals and a commitment to make a real difference—to improve the lives of those impacted by brain tumors,” she said, “coming together to approach the problem is the ideal way to achieve those goals.”
*Not the patient’s real name.
CURRENT PROJECTS
$48K - "Increasing the clinical applicability of SmartCare, a neuro-oncology caregiver intervention”
UVA’s Cancer Prevention and Population Health Research Program
This yearlong study will recruit caregivers and primary care providers to solicit their feedback and guidance to develop a new physical and emotional health care guide that will become part of a previously tested intervention to improve caregiver health. The project focuses on figuring out how healthcare professionals can best help caregivers maintain their own health in the midst of a challenging moment in their lives.
$15K - “Enhancing compassionate care delivered by caregivers”
Compassionate Care Research Fund, UVA School of Nursing
While caregivers say they need interventions to reduce stress and improve health, they don’t consistently engage with them. In this yearlong study, Sherwood will seek feedback from neuro-oncology caregivers, primary care providers, and a six-member advisory board about what physical, emotional, and clinical outcomes are most critical to each group and what evidence-based interventions might most effectively and practically be deployed to maximize their positive impact.
$25K - “Building the tools to make real change in BMET caregiver support”
Brain Metastases Research Collaborative Pilot Project award
Between 150,000 and 200,000 cancer patients are newly diagnosed with brain metastases each year, yet the literature on how to support them is scarce. Across three interview “rounds,” caregivers, primary care providers, and patients will indicate which supportive care outcomes are most important to them. Findings will be used to trial and implement supportive care within brain metastases. Sherwood will also zero in on factors that influence caregivers’ ability to monitor their emotional and physical health while they’re providing care, and what the best communication methods between themselves and their primary care providers are.