This article was originally published on Pulse by Pulse News Contributor, Kate Greulich
A growing, but largely unseen, group of family caregivers is quietly providing the healthcare many Americans receive. They provide unpaid health care valued at $600 billion nationally ($4.2 billion in Utah), often at the expense of their own health.
Meanwhile, University of Utah Health has become a national leader in research, education, and outreach programs supporting these essential care team members.
Read on to learn how The Family Caregiving Collaborative (FCC), a multidisciplinary team led by the College of Nursing with critical campus and community partners is changing the lives of the caregivers, and how you can get involved.
Caregiving is A Designated Area of Innovation at U of Utah Health
Since 2018, The Family Caregiving Collaborative (FCC) and its partners has been working to create a future where family caregivers of all ages, races, ethnicities, and genders are seen, heard, understood, valued, connected, and supported.
"When caregivers are acknowledged and integrated into a patient's care plan and supported in their role, everyone benefits: we see healthier patients and communities, and more efficient health care delivery alike. There are very few places in the healthcare system where caregivers are not present," says. Lee Ellington, PhD, director of the FCC.
How important is caregiving to health care delivery? Consider these numbers from the The Utah Caregiving Perspectives Report (2024):
- 40% of caregivers report substantial financial stress
- 50% of those providing 40+ hours weekly delay seeking healthcare for themselves
- Caregivers who provide the most care – 40+ hours a week – are more likely to be concerned about the adequacy of the care they provide
That’s a significant number of Utahans finding caregiving to be challenging. And when caregivers struggle, patients see higher rates of readmission and poorer outcomes. Caregivers, too, are also more likely to develop chronic health conditions when their needs go unmet. “Supporting caregivers is good medicine,” Ellington shares, “and that’s why we are very proud that the Vice President of Research named Caregiving an Area of Innovation at the U.”
Building Support Systems through Research, Outreach, and Education
The FCC works across research, medical education, and health care and community services to understand caregivers' needs and to design effective support programs. The FCC aims to:
- Empower health care workers to recognize family caregivers' critical role
- Test new approaches supporting patient AND caregiver well-being
- Partner with stakeholders to improve caregivers' lives
Multidisciplinary Research on Caregiving Across the LIfe Course
Caregiving is informed by complex social, emotional, cultural, and economic conditions, and that’s why members of the FCC conduct diverse, community-connected research across the life course.
For example, Jennifer Mundt, PhD, a sleep psychologist and associate professor in the Division of Public Health and the newest FCC Fellow, is exploring how family members help manage sleep disorders. And FCC member and former Fellow Schola Matovu, PhD, assistant professor in the College of Nursing, runs an NIH-funded K01 study providing activity and health coaching for grandmother-caregivers in rural Uganda. Her work also explores unmet needs of older grandparent-caregivers in Utah's urban and rural communities.
“Most people will become caregivers during their lives,” Ellington shares, “and that’s why we need to understand this work in real community ecosystems.”
Outreach to Caregivers That Puts Research Into Practice
“We want to build tangible, orchestrated systems of support for caregivers that meet them where they are – often at home, where most caregiving happens," says Lynn Reinke, PhD, who leads an initiative designing and testing different models of care delivery across Utah’s many communities.
Reinke’s current favorite project? A collaboration with Utah State University-Extension, AgWellness, which brings mental health services to rural Utah. Her team is working with AgWellness to gain a deep understanding of the nuances of providing mental health services to farmers and ranchers, including the role of caregivers in encouraging them to seek care. They are also developing guidelines to help clinicians better support rural mental health care access in Utah and across the Mountain region.
Education that illuminates the roles and challenges of caregivers
Caregiving is not just a priority at University of Utah Health: thanks to the RAISE Family Caregivers Act of 2018, there is now a national strategy recognizing and supporting family caregivers, and which is informed by multitudes of research, practice, and theory representing many disciplines.
But Sara Hart, PhD, RN, saw a need for extending that strategy into nursing education - so that nurses feel fully equipped to support family caregivers too. Under Hart’s leadership, and in collaboration with the Betty Irene Moore School of Nursing at UC Davis, the University of Utah College of Nursing has established the National Consortium for Family Caregiving in Nursing Education.
The Consortium has recently codified a list of Family Caregiving Domains and Competencies of Level-One Nursing Education that will guide caregiving awareness and support within nursing instruction.
“This is a really critical moment to have completed this work, as nursing curricula across the board is moving to competency-based assessment” Hart stated. “This list will help shape nursing curricula nationally.”
The Consortium will also be releasing a new website hosting materials, webinars, tools, and other resources that aim to make understanding family caregiving simple and accessible for clinicians across the U of Utah Health system.
"What I want folks to know is that the work we're asking clinicians to do is not additive – it's illuminative," Hart states. "With tiny tweaks to pedagogy and practice, we can bring caregivers visibility and support their success. Because everything we do for optimal patient outcomes also values and empowers caregivers."
How You Can Get Involved
"There is an open invitation to get involved with the Family Caregiving Collaborative," Ellington shares. "We need diverse interests to truly drive innovation in family caregiving for Utahans."
Visit their website to explore research, resources, and events, including:
- The Caregiving Science Across the Life Course speaker series (co-hosted with Johns Hopkins University) - register via christine.moua@nurs.utah.edu or watch on demand.
- The 4th Biennial Conference on Caregiving Research at University of Utah, September 23-26, 2026. The national visibility achieved by University of Utah Health and the community in family caregiving has led to our selection as the host for the conference. Researchers and organizations across the country will convene to focus on elevating caregiving research, policy, and practice. Join the conference listserv at fcc@nurs.utah.edu.