Family caregiving: What’s the big idea?

When the framework for a special family caregiving initiative emerged in 2017, it was done by a small group of people with one big idea. Lee Ellington, PhD, professor at the University of Utah College of Nursing (CON), noticed an alarming upward trend in family caregiving work.

Caregivers are relatives, partners, friends, or neighbors who provide support for someone with a chronic condition or disability. They may include children caring for aging parents, parents with differently abled children, spouses shouldering the burden of chronic disease, or myriad other situations.

“Caregiving takes place across a lifespan, and varying circumstances,” says Ellington. “Our research shows a real danger of heading into a public health crisis because caregivers are providing a substantial amount of care without the same quality of training or resources available in a traditional health care system.”

Ellington voiced concerns about the growing need for caregiver support. She expressed ideas and gathered information within her academic area and in the community at large. Others at the CON shared Ellington’s concerns and echoed her desire to create change through the initiative.

“We built our programming around the University of Utah’s strengths,” Ellington says.

Ellington, along with colleagues Debra Scammon, PhD, of the David Eccles School of Business, and Rebecca Utz, PhD, from the College of Social and Behavioral Science began campus-wide conversations and partnerships to identify what could be done to help meet rising challenges for Utah’s more than 336,000 caregivers.

In 2020 the original caregiving initiative was reimagined as the Family Caregiving Collaborative. It now encompasses 35 faculty, multiple community partners, and a growing network of allies across the University.

“The concept of family caregiving is something that resonates with everyone,” says Deidre Schoenfeld, CON’s strategic initiatives program manager. “Many people have their own caregiving story or are familiar with the growing need to support those in caregiving roles.”

“The saying ‘It takes a village…’ applies to the public health crisis facing family caregivers,” adds Scammon.  “Just as families often come together to care for a person with chronic illness or disability, the Collaborative brings together these caregivers, researchers, local health care providers, community leaders, policy makers, and educators to recognize the essential role families play in managing the health and well-being of our communities.”

Progress has accelerated over the past year. The COVID-19 pandemic only served to highlight the needs of caregivers. As many people self-isolated and followed stay-at-home orders, caregiving needs intensified. Lack of external support required caregivers to double down on their responsibilities.

“COVID really magnified the fragility of the systems caregivers rely on,” explains Schoenfeld. “Without regular access to external services, caregivers are taking on the burden of necessary and routine health care.”

Moving forward, the Collaborative plans to inform public policy, improve health professional education to better address family caregiving needs, and make research findings accessible to the larger community.

As a nurse and caregiver herself, philanthropist Annette Cumming, who also serves on the Dean’s Advisory Board at the College, was drawn to the Collaborative’s mission. Recently, the Collaborative garnered her support in the form of a half-million-dollar gift from the Cumming Foundation.

“This gift is personal to me,” says Cumming. “As caregivers, we are often reluctant to ask for help for fear of being seen as inadequate. We try so hard to do it all ourselves, but rarely have the necessary skills.”

“We think of Utah as a family state,” Ellington says. “We now have the opportunity to be a national leader in daily caregiving. Our Collaborative is bringing people together and to the table to be part of that.”

A longer version of this story has been published by the College of Nursing.

To learn more about the Family Caregiving Collaborative, or to find resources for caregivers, please visit our webpage, or contact Deidre Schoenfeld.