September 9, 2019

Helping caregivers realize they need care, too

Madison, Wis. — Chronic medical conditions, including cancer, have impacts beyond the patient themselves as families shoulder the responsibility of providing informal but often crucially overlooked and undervalued support to a loved one.

“When I put it in a survey, I usually ask about whether someone is providing unpaid care to a family member or a friend with an illness or disability, but that is a really granular sort of uncompelling way to talk about caregiving,” UW Carbone Cancer Center member Kristin Litzelman, PhD, said.

Litzelman, an assistant professor in the Department of Human Development and Family Studies, studies how cancer affects family caregiving. Her research uses patient and caregiver surveys collected through large cancer consortium databases and nationally representative surveys, where she sees that caregivers span different age groups and familial relationships, and when analyzing these large datasets, she thinks about how these demographic factors can change a caregiver’s perception of their role.

Kristin Litzelman
Kristin Litzelman, PhD

“It’s really about the other circumstances that caregivers are bringing to the situation that are contributing both to the resources that they have and to the way that they’re holding that stress and experiencing that extra role,” Litzelman said.

Her recent work has focused on the interrelationship between caregiver and care recipient well-being. She has reported that when their spousal caregiver experienced depressive symptoms, a cancer survivor was four times more likely to have elevated depressive symptoms themselves a year later. In later studies, she has also drawn associations between caregiver quality of life and care recipient outcomes as well as between caregiver well-being and perceived quality of care. Now, she is looking to see how caregiver well-being might influence the clinical care that cancer survivors receive.

 “They may not have the energy or emotional capacity to do the things that they need to do to support that person and that extends to clinical care too,” Litzelman said. “They may not have the capacity to help with communicating with providers, which we know that caregivers do a lot of. They may not have as high of a capacity to help with the coordination of care, which they do a lot of.”

Therefore, Litzelman advocates for including caregivers in the clinical care experience though both academic and outreach efforts. In her research papers and her talks with clinicians and medical students, she stresses these effects of cancer on caregivers as a reminder for healthcare providers to actively think about the ways that home life shapes patient outcomes.

She has also recently worked with the patient advocacy group Covering Wisconsin to develop one-page handouts that describe some of resources available for caregivers within several Wisconsin counties, and she has worked with the Wisconsin Family and Caregiving and Support Alliance to engage with employers about workplace accommodations and services available to support caregivers.

“I’m really thinking about things holistically and trying to think about what we do with this information,” Litzelman said. “How does this help us help that individual caregiver and then help all caregivers on a population level?”

Ultimately, Litzelman wants to see a culture change around caregiving. Oftentimes people, especially the partners of cancer survivors, do not realize that they are a caregiver until they have reached the point of burnout. Rather than viewing it as a responsibility that they must undertake alone, Litzelman hopes that people will see come caregiving as a family health issue.

“We want to make sure the people who need the resources are getting the resources so that they can continue in their role, so they can have good wellbeing, so they can thrive as human beings, and so that their families can thrive as well,” Litzelman said.