It's difficult enough when a loved one is diagnosed with cancer, but employed spouses of those who receive the diagnosis also are confronted with an array of practical problems. It's now up to them to untangle issues around medical leave, health insurance, caregiving benefits, and more.
It's a topic health economist Cathy Bradley, PhD, deputy director of the CU Cancer Center, encountered frequently during her previous studies on employment outcomes for cancer survivors. In 2019, Bradley and former CU Cancer Center member and stress researcher Mark Laudenslager, PhD, received a nearly $4 million grant from the National Cancer Institute to study ways to lessen the impacts of stress specifically on cancer caregivers who are also employed.
"If you have a full-time employee who's covering the family for health insurance and then their spouse becomes ill with cancer, the caregiver can't stop working," says Bradley, also professor and associate dean for research for the Colorado School of Public Health. "It's this tension that occurs and is much stronger than it would be if they were caregiving alone."
Laudenslager died in December 2020, and the COVID-19 pandemic slowed the study's progress, but study team got things moving again in April and is now enrolling caregivers to test the effectiveness of two interventions: one a series of user-managed online modules addressing caregiving concerns, the other a weekly telehealth visit with a counselor to talk through the same material face to face. A third arm, "treatment as usual," adds no new interventions to any counseling the caregiver may already be undergoing.
"What we're trying to test is: does the intervention improve outcomes? Does it reduce the cost of care for the caregiver? Caregivers often become very sick themselves due to stress," Bradley says. "It's a holistic approach where we also cover the stress of caregiving and the importance of taking time for yourself. What's different is that most stress interventions don't think about work."
The research team is also collecting hair and saliva samples from the caregivers to study cortisol levels as markers of stress. "It will be interesting to see how that corresponds with self-reported stress, so we can then determine through biomarkers which caregivers are starting to get into trouble," Bradley says. "We know that caregiver health greatly impacts patient health."
When the study is complete, Bradley hopes the results will be helpful to caregivers as well as to companies who want to offer support to the caregivers in their ranks.
"I'd like to be able to make recommendations to employers in terms of how to support their employees who are caregivers," she says, "and I'd like to have recommendations and tools available on cancer center websites on what employed caregivers need to know. You've just become a caregiver for someone with cancer and you're trying to work full time -- what employment rights do you have? What are some steps you should take? How do you talk to your employer?"
Orah Fireman, M.Ed., LCSW, a professional therapist and senior professional research assistant in the Department of Psychiatry at the CU School of Medicine, leads the in-person interventions for Bradley's study. She meets with caregivers for hourlong sessions once a week, over Zoom, to talk through strategies on talking to employers, as well as more general tools for handling stress, and the responsibilities of caregiving.
"People are so ready and wanting this support," Fireman says. "Caregivers are under extreme stress. It's not just their worries about their loved one and their health and if they are going to get better, but then there's the day-to-day -- physically caregiving for them if they need it, going to appointments with them, the unexpected needs, and runs to the hospital in the middle of the night because something isn't going right.
"These caregivers are also working," Fireman adds. "So they're also trying to maintain their jobs and be good employees and colleagues."
Fireman is excited to be part of the study and to help develop better ways to assist caregivers, but she also is impressed by how the spouses she talks to are already finding their ways through their new realities.
"I'm always struck by people's resilience," she says. "It's amazing how people cope. Even though there's room to grow in their coping skills, it's astounding what people manage to handle. It feels like what we have to offer is a match to what people need, and that feels really gratifying."