Health care doesn’t stop when a patient leaves the hospital. The vast majority of most patients’ care happens outside the hospital, frequently provided by family members. For family caregivers, this is a significant responsibility. Caregivers often struggle to balance work, caretaking duties, and other responsibilities while managing what can be intense emotional stress.
The Family Caregiving Collaborative (FCC) aims to find better ways to care for the caregivers by learning about families’ experiences, needs, and coping strategies. “Our interest is families who are caring for individuals across diseases, conditions, and disabilities as well as across the life course,” says Lee Ellington, PhD, director of the FCC, professor in the College of Nursing at the University of Utah, and a Huntsman Cancer Institute investigator. “Maintaining caregiver health and well-being is a huge need. They really need support.”
The issue will only become more urgent with time. As the population of the state and the nation shifts older, the proportion of people caring for older adults will likely increase.
“As health care clinicians, we would be doomed if we did not have family caregivers with us at the bedside and in the home,” says Lynn Reinke, PhD, associate professor in the College of Nursing and a member of the FCC.
Listening to caregivers
Young adult caregivers, who may be caring for parents and children at the same time, face particular challenges, Echo Warner, PhD, has found.
Her research has uncovered that many young adult caregivers tend to find themselves in “job lock,” in which they can’t leave their jobs because they’d lose health insurance for the patient. “The challenge is that a lot of these caregivers are also providing unpaid care for 40 hours a week,” says Warner, who is an assistant professor in the College of Nursing, a member of the FCC, and an associate member of Huntsman Cancer Institute. “It’s essentially a full-time job itself.”
Caregiving also takes an emotional toll that can have additional impacts for young adults, especially in rural areas. Compared to older caregivers, young adult caregivers have higher rates of depression, anxiety, and stress within the first six months of caregiving, Warner has found. And caregiving can be isolating, making it more difficult for young adults to form the new social bonds that are typical of this life stage.
Helping rural populations
Anxiety, stress, and social isolation are also major concerns of Reinke and Kathie Supiano, PhD, professor in the College of Nursing and a member of the FCC. Social isolation is common in older adults in rural areas, Reinke has found. That’s why she and Supiano are studying how ranchers and farmers deal with mental health challenges—and the important role their families play.
Ranchers and farmers make a living in a career where the vast majority of factors, from crop prices to the weather, are unpredictable. The increased level of uncertainty puts these populations at higher risk of mental health challenges like anxiety, Reinke says.
In an effort to better understand the mental health challenges ranchers and farmers may face, Reinke and Supiano are evaluating a State of Utah Department of Agriculture project that provided vouchers for mental health services to these populations. Together with researchers at Utah State University Extension, they’re working to understand how improved access to mental health care affects the experiences of patients, families, and providers.
Supiano and Reinke saw an immediate and intense demand for the program, which they say affirms the need for improved access to mental health care for these populations and justifies renewal and expansion of the program.
Their results so far suggest that family support plays an enormous role in getting people in the door. “Most of the farmers and ranchers who sought help did so at the urging of their family,” Supiano says. “Stigma is powerful, but family saying something like, ‘Dad, I’m worried about you and here’s a service. I love you. I care for you. I’m concerned about you. But I can’t do this thing that this professional does.’ That’s a transformative moment.”
Finding new solutions
The researchers’ work suggests interventions that could help support both patients and caregivers. On the financial side, Warner says, paid caregiving leave and the ability to work remotely could give caregivers a bit of breathing room. Financial guidance around working with health insurance could also make a big impact.
Better integration of families into medical care, including support around transitions of care across different health care settings and conditions, is also needed, Supiano adds.
On the social and emotional side, Warner’s work shows that social media and other technologies, like videoconferencing, can help alleviate isolation, provide emotional support, and connect caregivers with people who have gone through similar experiences.
Teleconferencing can also directly support patients, Reinke and Supiano say. Virtual meetings provide access to mental health care for people in remote rural areas, who might live hours away from the nearest mental health professional. Plus, telehealth-based methods can alleviate some of the stigma around seeking help.
For caregivers, Warner adds, finding a way to talk with friends and family about their challenges is crucial. “People can’t help if they don’t know you’re struggling,” she says. “It’s hard to do that though. It’s really hard to say, ‘I’m struggling and I need help.’” Here, too, technology can help make communication a little easier. Apps can track concrete needs—from gas money to someone to watch the kids for a few hours—so that peoples’ support networks can do the most good.
Supiano hopes that the work she and others are doing with the FCC will pave the way for more research and interventions. “We’re sort of like the cow catcher on the train,” she says. “We hope that this will be a train with lots of cars on it that communicate and build off each other.”
Reinke is similarly hopeful for the wide-ranging impacts of these projects. “We want to shift the paradigm of how we provide care to patients and families,” she says, “not only in our health care system but across the country.”
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