Understanding caregiver burden in cancer

In the U.S., an estimated 4 million people spend an average of 8 hours per day taking care of cancer patients. These devoted people aren’t medical professionals and they aren’t reimbursed for their time or efforts. These are informal caregivers, usually family members, who have put their lives on hold to care for a sick relative in their time of need. 

“It affects a tremendous number of people — and that’s just cancer” says Robin Matsuyama, Ph.D., an associate professor in the Department of Health Behavior and Policy, VCU School of Medicine. “The percentage of people that are taking care of family members for different debilitating diseases is huge.”

Matsuyama is the co-principal investigator on a study, titled “Informal Caregiver Burden in Advanced Cancer: Economic and Health Outcomes,” which will gather data about the impact on caregivers. Matsuyama says the study is the first of its kind. 

“There is some data about the impact on caregivers, but the primary research is in Alzheimer’s and dementia and what effect there is emotionally,” she says. “This is the first longitudinal study of caregiving in cancer and will delve a little deeper into what exactly the tasks and financial data are, and what the effects on employment are.”

The multisite study will follow 320 caregivers. One set of 160 will be caregivers to cancer patients at the VCU Massey Cancer Center. The second set of 160 will be caregivers to cancer patients at Temple University Fox Chase Cancer Center, which will be overseen by Matsuyama’s co-principal investigator, Laura A. Siminoff, Ph.D., dean of the College of Public Health and professor in the Department of Social and Behavioral Science at Temple University.

The study will follow caregivers for six months, during which researchers will visit them once every two weeks to conduct an interview. Researchers will also do direct observation once every month, shadowing a caregiver for several hours.

“We want to find out, what are they actually doing, what is expected of them, what are they tasked with, how prepared are they, how hard is it?” says Matsuyama. “What’s rewarding? What’s difficult? We also want to look at their physical health, psychological health, finances, employment situation, and how those things change over time. And over six months of caregiving, what are the other burdens of caregiving? For example, do they postpone going to the doctor themselves?”

Matsuyama believes the study is timely because cost-saving measures are transferring an ever-rising percentage of the care burden to family members.

“In caregiving, more and more things that used to be done by nurse’s aides or nurses are now being offloaded to family,” she says. “I think it saves the system money. But what effect does that have on the family?” 

The study is funded by a $4.77 million grant from the National Institutes of Health National Cancer Institute. It started in August 2015 and will run through July 2020. Matsuyama has already observed participants enjoying being in the study. 

“It can be very isolating for caregivers,” she says. “But because we want to know what they’re doing, this is an opportunity to share what they’re going through.” She is optimistic that once the study is complete, her work will help ease the burden of caregivers. “What I would hope is that we identify ways we can intervene, provide additional support or make changes to health care policy,” she says.