City of Hope researchers have just received a $2 million grant from the National Cancer Institute to study a crucial but rarely examined aspect of patient care and quality of life — the family caregiver.
Family caregivers have been left out in many ways, and we really need to understand how to take better care of them,” said Sun.
The term “family caregiver,” she explained, includes any nonprofessional friend or significant other who is the primary caregiver for a patient.
Many of the problems caregivers face — among them high levels of stress and lack of preparation for the tasks they must perform — were documented in the 2016 report Cancer Caregiving in the U.S.
Jae Kim, M.D.
Sun and Kim conceived the study after the eye-opening results of a previous trial they had worked on. It revealed that while standard intervention and education methods were helpful for patients — they were not so helpful for their caregivers.
“This was particularly true for surgery,” said Sun. “The quality of life for patients rebounds relatively quickly — but it takes a longer time for caregivers to recover.”
That’s why, for this study, they will focus exclusively on lung cancer surgery, Kim’s area of expertise.
SURGICAL ADVANCES MEAN A GREATER NEED FOR FAMILY CAREGIVERS
With technological advances and an increase in minimally invasive surgery, there’s often no need for long hospital stays.
“In fact, it’s better for most patients to go home,” said Kim. “It helps them recover and resume their normal lives faster.”
However, when caregiver preparation isn’t adequate, the patient may wind up in urgent care, an emergency room or even a nursing facility, where a long stay can lead to complications.
Kim has seen this too often. Recently, one of his patients contracted a serious infection in a nursing facility and had to be readmitted to the hospital.
“I’m convinced that if her husband had been better prepared to take care of her, and if we had given him the resources he needed to be psychologically and emotionally prepared for caregiving, I don’t think that complication would have happened,” he said.
What’s more, though there’s insufficient data for a direct cause-and-effect link, when caregivers fall ill themselves, the stress of caregiving may sometimes be the cause.
THE STUDY’S INNOVATIVE APPROACH
Caregiver preparation has often consisted of videos and print materials developed by groups like the American Society of Clinical Oncology (ASCO). They’re informative — but Sun and Kim realized that wasn’t enough. They had to think about the problem in a different way.
It’s not that helpful to just give information,” Sun said. “We need tools that can help caregivers self-manage the individual issues that come up for them.”
Over the course of five years, the pair plan to recruit 160 patient/caregiver dyads. The intervention will begin when the decision to have surgery is made and continue for 90 days after the patient’s hospital release.
In this randomized trial, the control arm will receive the standard ASCO material. The intervention arm will be given video and print material developed for the study, specifically for lung cancer surgery patients and caregivers. In addition, there will be face-to-face sessions with a nurse to help deal with specific needs and problems.
In the nearly 42 years since she found her “calling,” Betty Ferrell, Ph.D., M.A., R.N., has established herself as a world-renowned expert on palliative and hospice care. She recently joined the National Academy of Medicine, one of the highest honors in health and medicine.