Innovative Program Aims to Improve Support for Cancer Family Caregivers
The man was 56 when he was diagnosed with acute myelogenous leukemia (AML). The prescribed treatment for the AML was a stem cell transplant. With her husband undergoing a grueling treatment and recovery, his 53-year-old wife suddenly became his full-time caregiver. The wife had her own health problems as well. Several years earlier she had undergone heart bypass surgery after suffering a heart attack. Even so, she continued to smoke.
According to a case report on the couple’s travails, the wife “struggled to maintain hope for the transplant's success while living with the constant uncertainty of her husband's survival. Although she complained little, when asked, she reported severe emotional distress, significant fatigue, sleep impairment, and difficulty maintaining her focus and energy throughout the transplant trajectory.”
While much of the discussion around cancer focuses on new treatments and their impact on cancer patients, until relatively recently, family members of cancer patients have often gotten lost in the shuffle.
“Family caregivers provide the vast majority of care for people with cancer across all phases of illness,” said Dr. Betty Ferrell, a leading researcher on nursing and cancer palliative care at City of Hope Cancer Center in Duarte, CA. “Yet they are often unprepared for this task and undervalued for their care.”
“Family caregivers can really struggle,” added Jo Hanson, an oncology nurse and senior research specialist at City of Hope.
And caring for loved ones with cancer is only getting harder. “Patients are being discharged when they are much more acutely ill,” Hanson said.
Oncology nurses and social workers are typically caregivers’ first line of support, Hanson explained. So it’s no surprise that oncology nurses represent the largest portion of participants in an educational program called the Family Caregiver Project, for which Dr. Ferrell is the principal investigator and Hanson the project director.
The NCI-funded program is intended to provide oncology care professionals with the tools and information needed to help cancer family caregivers care for themselves and their loved ones.
“Cancer centers have a tremendous opportunity to create models of family support,” Dr. Ferrell said. “With education and support, family caregiving in cancer can also be an experience of profound meaning, as family members are able to provide compassionate and competent care.”
Setting Realistic Goals
The 5-year project is composed of four 3-day courses, with leading experts providing the most recent evidence on how to support and care for family caregivers. Each 3-day course covers the four quality-of-life domains: physical, psychological, social, and spiritual well-being.
Multidisciplinary teams—often consisting of an oncology nurse and a social worker, but also administrators, dieticians, psychologists, and physicians at times—must apply to attend the 3-day course. Each course has a new crop of roughly 100 participants. The first two courses were held last year, and the third was held earlier this month. All told, 317 people from 39 states have taken part in the program, Dr. Ferrell said.
Each course has a similar agenda, Hanson explained, although the second and third installments have changed somewhat based on participant feedback. Fueled by comments from participants in the first two programs, for example, this month’s program included more content on developing caregiver support groups and improving communication between caregivers and the treatment team.
As part of the application process, each team must develop goals they want to accomplish after attending the program, typically changes or initiatives that they would like to implement at their own institutions.
Family caregivers provide the vast majority of care for people with cancer across all phases of illness.
Their goals, however, have to be realistic and practical, explained Dr. Polly Mazanec of Case Western Reserve University, a project faculty member.
“We don’t want them tackling something we know could never happen,” she explained. “We want them to focus on what is doable at their center. It might be a 1-day workshop for caregivers that’s offered every month, a half-day class, [or] starting additional support groups. It’s about weighing great ideas versus what is feasible, because we want them to be successful.”
During the course, participants’ goals may change based on what they learn and discussions with project faculty, Hanson explained. Participants must submit updates on their progress at 6, 12, and 18 months after completing the course, and they can revise their goals as they go along. They can also get feedback from faculty members at any time.
The Evidence for What Works Best
Rebecca Fujinami, an oncology nurse at City of Hope, and a colleague attended the first course hoping to find ways to strengthen a study they are part of involving lung cancer patients and their family caregivers.
One of their goals was to improve the tools and resources they provide to caregivers as part of the study’s intervention component. “We wanted to make sure that we’re really headed in the right direction, to make sure that what we provide is based on the latest research,” Fujinami said.
The course has an added benefit, she continued. “It really connects you to the best people doing [caregiver] research.”
Those sorts of connections are one of the byproducts the project team hopes to foster.
“We’re really striving to form a national network,” Hanson said. With a nationwide web of project alumni, she continued, “they can contact each other, learn what each is doing that works or what kind of new resources they are finding, and develop new collaborations.”
An initiative like this was sorely needed, Fujinami said. The health of cancer patients and their caregivers are intertwined, and multiple studies have indicated that the better family caregivers fare in the four quality-of-life domains, the better patients do in terms of quality of life and even health outcomes.
A Source of Support for Family Caregivers
There are many ways that oncology nurses and other members of the care team can help family caregivers. One of the most important, stressed Dr. Mazanec, is taking a moment with the caregiver to assess how they’re doing. “Just something very basic,” she said. “Are they taking care of themselves? Are they eating and sleeping? Are they as psychologically strong as they could be?”
Referring caregivers to national and local resources for support is extremely important, Hanson stressed.
“There are so many excellent resources available,” she said, including materials developed by NCI and CancerCare, and City of Hope’s own website. Many communities also have services to help caregivers, including support groups, hospice care, and financial-aid services.
The following websites also have resources that can be helpful to family caregivers*:
* Excerpted from “Resources for Family Caregivers,” by Rebecca Fujinami et al.