Caring for a Loved One with Cancer Can Be Tough: These Two Care Team Providers Can Make It Easier
When someone is diagnosed with cancer, a team of medical professionals mobilizes to coordinate care. Depending on the diagnosis and treatment strategy, patients may be cared for by surgeons, medical oncologists, radiation oncologists, nurses, physical therapists, and other specialists providing hands-on care.
In many cancer centers, patients also have access to two additional team members: psychosocial oncologists and oncology social workers. These professionals provide valuable services to both patients and their family caregivers as they navigate the confusing and uncertain world of cancer diagnosis, treatment, and survival.
What is a Psychosocial Oncologist?
Psychosocial oncologists address the psychological, behavioral, emotional, and social issues that arise for cancer patients and their loved ones. They focus on the emotional response patients and families have to cancer, as well as the emotional, behavioral, and psychosocial difficulties that influence living with cancer.
Many psychosocial oncologists are members of the American Psychosocial Oncology Society (APOS), which was formed in 1986 to advance the development and delivery of equitable and evidence-based psychosocial oncology care through research, practice, education, and advocacy.
Why Should a Caregiver Seek Help from a Psychosocial Oncologist?
While psychosocial oncologists most often work directly with patients, they also can help friends and family members who are caring for their loved one with cancer.
APOS member Allison J. Applebaum, PhD, is a licensed clinical psychologist and director of the Caregivers Clinic at Memorial Sloan Kettering (MSK) Cancer Center’s Counseling Center. She and her MSK colleagues focus on the well-being of caregivers while they navigate the different stages of a loved one’s cancer journey. They provide services such as individual counseling, group counseling, family/couples counseling, and the opportunity to participate in clinical trials for caregivers.
“Caregivers of loved ones with cancer – regardless of the cancer’s site or stage – face the common challenge of sitting with uncertainty,” Dr. Applebaum said. “They don’t know what the next year, month, week, day, or even hour might bring, which makes it difficult to plan for their future and can lead to anxiety and distress.”
She said many caregivers seek support from her clinic to help them cope with the “existential distress” that results from the challenges of facing an uncertain future, including having difficult, decision-making conversations with their loved one and the health care team about their loved one’s care for which family caregivers rarely receive formal training.
“We have found that anxiety, depression, and other mental health concerns among caregivers are often more significant than they are in the patients they are providing care for,” she said. “In fact, they can be at risk for symptoms of post-traumatic stress disorder, especially if they witness their loved one having a significant medical event.”
How Can a Psychosocial Oncologist Help Caregivers?
Dr. Applebaum and her team at MSK rely on empirically supported treatments and interventions – evidence-based approaches they know will work – to help alleviate caregiver distress.
One approach they use is cognitive behavioral therapy (CBT), which helps people address both their thought processes as well as their behaviors, to help them adjust to the demands they face. CBT places an emphasis on helping individuals learn to be their own therapists. In-session exercises and outside “homework” helps caregivers develop coping skills, whereby they can learn to change their own thinking, problematic emotions, and behavior.
Another evidence-based approach practiced at MSK is Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers. The approach helps caregivers derive benefits from creating, reconnecting with, experiencing, and sustaining meaning in the face of a loved one’s illness.
In one study of caregivers caring for loved ones with rare and aggressive tumors, MCP-C was shown to give caregivers a better sense of meaning and purpose in life. They developed a greater sense of spiritual well-being and an enhanced sense of “benefit finding,” meaning they were able to acknowledge new inner strength, greater resilience, and an enhanced relationship with their loved one, even as the health status of their loved one was declining.
“MCP-P isn’t about negating suffering,” Dr. Applebaum said. “It’s more about helping caregivers realize that despite profound challenges, they can still have access to the good stuff.”
What is an Oncology Social Worker?
Oncology social workers also provide psychosocial services to people with cancer, their families, and caregivers. They connect people diagnosed with cancer, and their families, with essential community, state, national, and international resources as part of the oncology team.
Many oncology social workers are members of the Association of Oncology Social Work (AOSW), created in 1984 and comprised of professionals and students who practice in hospitals, cancer centers, home care agencies, hospice, community-based oncology practices, community programs, patient advocacy organizations, educational institutions and other settings.
Why Should a Caregiver Seek Help from an Oncology Social Worker?
A cancer diagnosis can be extremely overwhelming for patients, and their family caregivers often shoulder at least part of the burden of navigating the complex and confusing health care system on behalf of the patient.
AOSW member Jennifer Dunn is a certified oncology social worker at Washington University’s Siteman Cancer Center in St. Louis. She and her colleagues provide support for the anxiety and financial worries a major illness like cancer can entail. While her primary focus is the patient in Siteman’s care, she was quick to acknowledge that a cancer diagnosis affects everyone in the patient’s life.
“When we meet with a newly diagnosed patient and their family, we ask them to identify who their primary supporters and detractors are,” Dunn said. “Caregivers often go unacknowledged as the unsung heroes of a person’s cancer journey. Because they can carry the same fears, worries, and hopes as the patient, we want to make sure their experiences are validated, and they get the support they need.”
How Can an Oncology Social Worker Help Caregivers?
Rather than apply a cookie-cutter approach to helping caregivers, Dunn and her team look at the issues from a patient-centered perspective, with the understanding that navigating the cancer care journey is different for every patient and every family.
“Oncology providers – the doctors, nurses and other professional staff – tend to speak a different language, using terms and concepts most people are unfamiliar with,” Dunn said. “Therefore, we start by validating the caregiver’s individual experience, acknowledging how overwhelming everything is, and letting them know they are not alone.”
Dunn helps educate patients and their caregivers on the various personnel, departments, and services available to them at the hospital, then works to get them connected to the right people and resources, both within the hospital and in the community. She helps them sort through insurance issues to determine, for example, if respite care, in-home care, or long-term care is a viable option to alleviate caregiver exhaustion and distress.
She and her team also regularly provide referrals to community, state, and national resources that help patients and their caregivers overcome health disparities driven by social determinants of health (SDOH), including food and transportation insecurity. Examples include arranging free or discounted rides to doctor appointments, helping patients and their caregivers apply for food assistance programs or find local food banks, and connecting patients and their caregivers with programs that cover out-of-pocket costs for medications.
“Oncology social workers are trained to get to the root cause of problems and then break down any barriers that keep our patients and their caregivers from having their needs met,” Dunn said.
Distress Screening is Important, But Caregivers Should Speak Up Too
Applebaum and Dunn both point to the critical importance of health care providers consistently and adequately screening caregivers for distress.
Dr. Applebaum helped to lead a study on a validated electronic distress screening program designed to address the unique concerns of caregivers, called CancerSupportSource®-Caregiver, developed by the Cancer Support Community. The pilot study also included a follow-up consultation with a nurse five days after being screened.
“One of the unique aspects of this screener is its built-in resources,” she said. “So, when a caregiver clicks a box indicating they are experiencing distress in a certain area – say financial – they are immediately emailed information about financial support services.”
The pilot study found that engaging in the screening process and connecting with a nurse five days later was associated with improved emotional well-being a full six months after the encounter.
When or if distress screening is not offered to caregivers, Dr. Applebaum encourages them to speak up and ask for help – whether that’s asking for help managing their emotional stress and anxiety or requesting instructions for the practical and medical aspects of caregiving, such as the right way to help their loved one get out of bed, administer medications, or change a catheter, tube, or bag.
“Make sure your loved one’s care team knows who you are and has your contact information documented in the patient’s record, so you are acknowledged as an important member of the care team,” she said.
“Caregivers are called upon to do a tremendous amount, and they should be applauded and valued,” added Dunn. “Our objective as social workers is not to do things for caregivers, but to give them the tools and empowerment needed to advocate and do things for themselves.”