Supporting Family Caregivers: The ‘Unsung Heroes’ of Patient Care

Supporting Family Caregivers: The ‘Unsung Heroes’ of Patient Care

The role of caregivers in oncology has taken on new importance as cancer care moves into the outpatient and home-based setting. Too often, though, caregivers are overlooked, and the stresses they encounter can have devastating effects on their own lives. On June 4, four experts will discuss these issues during the Education Session “Challenges Facing Family Caregivers and Emerging Novel Interventions.”*

“This is an exciting panel because it gets to the heart of cancer care and cancer care delivery,” said session Chair Sung Won Choi, MD, MS, of the University of Michigan. “Caregivers are doing the brunt of cancer care and delivery for the patient.” In addition, she said, there are emerging data demonstrating that outcomes depend in part on the ability of patients and caregivers to manage their self-care.

“The caregiver is the unspoken, unsung hero of patient care, particularly in the adult setting,” she said. They are often spouses or children of elderly patients who have to quit their jobs to care for a family member. They also take on a significant amount of financial stress, with adverse psychosocial effects on their mental and physical health.

Dr. Robert Noll
The Education Session will discuss the challenges caregivers face in both pediatric and adult settings. “They are different types of experiences, but there are some common themes and lessons we can learn across the spectrum,” Dr. Choi said.

The panel will focus on evidence-based interventions, including Bright IDEAS, a program designed for mothers of children recently diagnosed with cancer and supported by the National Cancer Institute. The program involves conversations with specially trained psychosocial providers to address challenging issues in the caregiver’s life—even those that have nothing to do with the child’s illness—and help them learn specific coping skills so that they can deal with those issues and be better advocates for their child and family.

“Bright is for optimism,” said session speaker Robert Noll, PhD, of the University of Pittsburgh School of Medicine. “IDEAS stands for ‘Identify,’ ‘Define,’ ‘Evaluate,’ ‘Act,’ and ‘See’ if it worked.”

Randomized trials to compare Bright IDEAS with standard of care found greater improvements with Bright IDEAS in mood, depression, and post-traumatic stress symptoms among caregivers of children with cancer. Even after the program ended, caregivers who learned coping skills continued to report less distress.

With a dissemination science grant from the National Cancer Institute, the Bright IDEAS team has trained more than 250 psychologists, nurses, and social workers at pediatric oncology treatment centers to provide bedside support. The program is being expanded into the adult setting.

Bringing Technology to the Caregiver

Dr. Kathi Mooney
Kathi Mooney, PhD, RN, FAAN, of the University of Utah, will discuss novel technology interventions in family caregiving, particularly in the adult setting. “In adults with cancer, the caregiver is there by the patient’s side but isn’t front and center in the interaction,” she said. “How do we support them when they have this silent but very important role?”

Current educational interventions, such as telephone coaching, are not scalable and often not realistic in the face of limited resources. That’s why Dr. Mooney and her colleagues are exploring the use of technology to assist caregivers. “Technology can be used any time the family needs it or on a daily basis when it isn’t possible for us to call from the clinic,” she said. “It brings care outside the walls of the clinic or hospital to where the caregiver needs it.”

Her team has developed a remote monitoring system in which the family caregiver calls to report the status of the patient. Based on that call, the system is able to coach the caregiver on the specific issues that the patient is experiencing. It can also send alerts to the health care provider if the symptoms require intervention. “We used it in the home hospice setting, where it demonstrated significant reduction in patient symptom burden and improvement in caregiver well-being compared to usual hospice care,” she said.

The Pediatric Caregiver

“Having a child with cancer brings a very specific set of challenges for parents,” Tammy I. Kang, MD, MSCE, of Texas Children’s Hospital and Baylor College of Medicine, said. Her talk will highlight how cancer affects parents of children with cancer.

“Evidence supports the need for early and ongoing psychosocial assessments of parents as caregivers along with interventions to optimize well-being,” she said. “They are caregivers whether their child is sick or healthy, but when a child develops a serious illness, it turns what most parents would say is a full-time job into a double full-time job.”

In addition to the disruption that hospitalizations and doctor appointments pose, parents often face time away from home and the need to balance the needs of other children. 

“On top of that is the challenge of how to care for a child who might die from an illness,” she said. Part of her talk will highlight the need for family-centered palliative care, which emphasizes quality of life and psychosocial and spiritual support for the entire family. She also will discuss the specific challenges parents face when their child is dying, including how to guide the child and family through the end-of-life experience.

“We attend conferences such as the ASCO Annual Meeting to learn about new and innovative science, but we have to pay attention to how to take care of these patients and families in the context of these new and emerging therapies,” she said. “We can’t lose track of what it means for patients and family members to have cancer; it is our obligation to guide them through the experience regardless of the prognosis.”

Dr. Choi agrees. “In our research, we are working passionately to move the science of cancer caregiving forward as well—trying to better understand the biological basis of certain pathologies as well as the mental and physical burdens associated with caregiving and to design innovative solutions.” 

–Debra Gordon, MS

*Program information updated as of March 5. For session time and location information, please refer to the ASCO iPlanner on the Attendee Resource Center (am.asco.org/arc).