Despite existing resources, most cancer caregivers aren't screened for distress or connected to help

November 16, 2023
MUSC Hollings Cancer Center researcher Katherine Sterba
Katherine Sterba, Ph.D., would like to see cancer centers use the same processes that exist to screen patients for distress in order to screen caregivers. Photo by Clif Rhodes

Cancer is a family affair. A cancer diagnosis affects not only the patient but also family members, particularly those who take on a caregiving role, said Katherine Sterba, Ph.D., an MUSC Hollings Cancer Center researcher.

“The role of caregiving has shifted over time as more cancer care is delivered in the outpatient setting,” she explained. “Caregivers are often family members; they're unpaid, informal caregivers, and they take on a lot of burdens – everything from emotional support and practical support to medical support, providing wound care, nutritional support and all kinds of things that they weren't necessarily prepared for or trained to do.”

Sterba recently led a team in collaboration with Chandylen Nightingale, Ph.D., of Wake Forest University, to conduct a study through the National Cancer Institute’s Community Oncology Research Program (NCORP) looking at how well community cancer centers screen caregivers for distress. The results, published in the Journal of the National Cancer Institute, show that there is a lot of work to be done.

While nearly every cancer center in the survey reported screening patients for distress, few screened caregivers.

“Two-thirds of the cancer programs were doing a good job systematically identifying caregivers and documenting them in the electronic medical record, which is the really important first step,” she said. “However, we found that only 16% were systematically assessing caregivers for distress. And, so, that's the gap that we identified that we want to address moving forward.”

Caregiving can take an emotional and physical toll, Sterba said, and caregivers may overlook their own health or hide their concerns from the cancer patient.

However, there are resources for caregivers – if they know where to find them.

“There are a lot of good interventions that have been developed, but they haven't been disseminated,” Sterba said. “So they often end up sitting on the shelf because we haven't figured out yet how cancer centers can adopt these evidence-based programs.”

Although this survey focused on community-based cancer centers, Sterba noted that academic cancer centers didn’t perform any better at screening caregivers and connecting them to resources. Although setting up a screening and referral system is complicated, it is possible – as shown by how many centers were able to implement patient distress screening when standards changed this to a requirement.

“We'd really like to piggyback on processes that work in effectively screening patients and screen caregivers effectively and efficiently in parallel with patients,” she said.

Her team’s next report will be on perceived barriers to implementing screening and meeting caregivers’ needs. In the meantime, she’s watching the progress of the CARE Act, a state-level law that requires hospitals to document family caregivers and provide them with instruction on the medical tasks they’ll need to perform at home when the patient is discharged. The law has been passed in 42 states, not including South Carolina.

“If caregivers are well-supported and have the resources that they need and can take good care of themselves, then they can be better caregivers,” Sterba said.

Research reported here was supported by the National Cancer Institute at the National Institutes of Health (Wake Forest NCORP Research Base 5UG1CA189824).