Regular People Doing Extraordinary Things: Cancer Caregivers Need Support
In 2019, Katie found herself stepping into the role of cancer caregiver to her husband when he was diagnosed with pancreatic cancer. A cancer caregiver is anyone who provides physical, emotional, financial, spiritual, or logistical support to a loved one with cancer. “I ended up becoming his full-time caretaker, as best as I could, because I had to work,” Katie said.
Navigating a cancer diagnosis was not new to Katie. Just a few years earlier, she had completed treatment for an aggressive form of breast cancer. Now she was providing full-time support to her husband while continuing to work, because she didn’t have any family or medical leave coverage through her employer. Katie's husband ultimately passed away. “It’s really unfortunate that I couldn’t take that time away from work to spend more time making his final days and months a bit more comfortable," she said.
More than 1 in 5 Americans are caregivers. On average, they spend 24 hours each week providing care. A cancer caregiver can spend up to 8 hours a day, or more, supporting their loved one. Many caregivers find themselves balancing their caregiving responsibilities with a full-time job, as Katie did. Others must make the difficult decision to leave their jobs, with the risk of facing setbacks later when they are ready to rejoin the workforce.
In addition to being time-intensive, the demands of caregiving can be hard physically, financially, and emotionally. All these factors put caregivers at risk for substantial distress that can impact their quality of life and physical and mental health.
“We often talk about caregivers as if they are superhuman, but they are not,” says CSC’s Vice President of Research Alexandra Zaleta, Ph.D. “They are regular people doing extraordinary things, and they need and deserve support.”
In 2022, nearly 2 million Americans will be diagnosed with a new cancer. As cancer treatments advance, caregivers are filling a critical support role for loved ones throughout their cancer treatment and beyond. “Caregivers are usually key members of the cancer care team,” notes Dr. Zaleta, “and the well-being of people living with cancer is often dependent on having care and support at home and through treatment and survivorship.”
Caregiving can be personally meaningful and fulfilling. But recent research reveals the toll it can take, too. In a survey of caregivers conducted by the AARP and the National Alliance for Caregiving, 1 in 5 caregivers considered their health to be fair or poor. Caregivers who felt alone, served as the primary caregiver, or lived with their care recipient more often rated their health as being fair or poor. The findings, released in a 2020 research report, point to an urgent national need for caregiver support.
“We often talk about caregivers as if they are superhuman, but they are not. They are regular people doing extraordinary things, and they need and deserve support.”
— Alexandra Zaleta, Ph.D.
In CSC’s own research, one-half of caregivers who responded to our cancer experience survey reported anxiety levels that were substantially worse than the national average. Additionally, some caregivers reported providing over 100 hours of care per week, and many reported a decline in their own health.
In our research, we identified several major areas where cancer caregivers need support. These include:
- Caregivers’ emotional well-being, including depression and anxiety
- Concerns about caregiving tasks
- The financial impact of caregiving and cancer care
- Healthy lifestyle concerns, including how to keep up with their own healthcare needs and exercise
To help address caregivers’ needs in those critical areas, CSC created CancerSupportSource™-Caregiver, a web-based distress screening, referral, and support program for family caregivers and anyone who is a care partner for someone living with cancer.
“The goal was to make a program that can rapidly and efficiently screen for concerns across all the major areas of caregivers’ lives, no matter where they are in their caregiving support experience, and make sure that those caregivers are getting the support they need,” says Dr. Zaleta.
CSS-Caregiver screens for caregivers’ concerns about their own well-being and the patient’s well-being, including their mood, pain, memory, and nutrition, since many caregivers need help supporting the patient in those critical areas. While caregivers are often trained on specific medical tasks, says Dr. Zaleta, CSC’s research shows that many caregivers want more help with things like providing emotional support to their loved ones.
"Cancer caregiver screening, referral, and follow-up need to be the standard of care in cancer."
— Alexandra Zaleta, Ph.D.
CSC’s research team has been developing and refining the CSS-Caregiver program over many years and phases. The finalized version, made possible with the support of the Novartis STEP (Solutions to Empower Patients) Program™, launched in January across CSC’s network of nonprofit and healthcare partners in the United States and Canada. After launching, CSC observed a 37% increase in screening of caregivers in just 3 months. “And we expect these numbers to continue to grow,” Dr. Zaleta notes. “We are also working with hospitals and healthcare centers nationwide to try to expand program access.”
CSS-Caregiver is a standalone caregiver support program, but it can also serve as a companion screening program to CancerSupportSource™, CSC’s distress screening, referral, and support program for patients. The tool is hosted on a digital platform led by Patient Planning Services, a social enterprise of CSC.
“The number-one feedback we get is that there’s no other program out there like this right now,” says Dr. Zaleta, who also noted that it's uncovering concerns that might not get mentioned otherwise. “Our supportive care staff are experts in psychosocial support, so it’s really rewarding to hear that even among seasoned clinicians, this tool is helping to further enrich their understanding of people’s unique needs and that this helps to enhance their care planning.”
Supporting caregivers is an ongoing healthcare need. Caregiver screening is a good place to start as we continue to gain insights into the needs of caregivers and how we can best support them. Finding additional ways to provide caregivers with medical-skills training, disease and treatment information, emotional support, and financial counseling can benefit the caregiver as well as the patient. We know that quality caregiving leads to better patient outcomes.
“Cancer caregiver screening, referral, and follow-up need to be the standard of care in cancer,” says Dr. Zaleta. “I want to see the caregiver community honored and supported by our healthcare system.”