Researchers found that caregivers have their own concerns and issues when their loved one is transitioning from being a patient in active treatment to a cancer survivor.
Caregivers have their own set of concerns and worries as their loved one transitions from cancer treatment to survivorship. These needs should be taken into account in the overall survivorship care planning, according to the findings of a recent study presented at the 2017 Cancer Survivorship Symposium.
Researchers at the Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins University School of Medicine recorded discussions with adult survivors of breast, prostate and colorectal cancer, as well as their caregivers to find out their concerns with the transition. This project was part of a larger study about cancer survivorship that is currently enrolling patients.
Half a dozen themes emerged, and while some were shared by both survivors and their caregivers, others were caregiver-specific and unique to that population. The two groups shared the following concerns: the need for information on side effects and follow-up care recommendations, confusion regarding the role each provider plays once treatment is complete, and the need for resources and support to help deal with issues such as physical and emotional distress and living a healthy lifestyle.
Caregivers themselves had some of their own concerns, such as uncertainty about their role as a caregiver, their own mental and emotional health needs and adjusting to the idea of their new role as their loved one enters the realm of survivorship.
“Being in this position is not just a new normal for the patient, but it’s also a new normal for the caregiver,” said Elliott Tolbert, Ph.D. Research Associate Department of Health, Behavior and Society Bloomberg School of Public Health Johns Hopkins University and author on the study said in an interview with CURE.
Moving forward, the researchers noted that support for caregiver-specific issues should be addressed in the overall survivorship planning process.
“I think that incorporating caregiver needs and support into survivorship as best as the clinician or clinical setting can would be ideal,” Tolbert said. “We’re still working on getting survivorship processes in place for patients, and caregivers should go hand in hand with that process because a lot of time, that caregiver has been right there by the patient through the whole process. Everyone comes out stronger if they have their issues and what they need addressed.”
Based on these findings, Tolbert said that resources will be available for all survivors and their caregivers in the larger, impending trial. However, he also recognized that providing comprehensive care and resources for caregivers of cancer survivors might not by the easiest policy to incorporate in hospital settings across the United States.
“When you think about a hospital, it’s difficult to provide resources for the patients, because you’re focused on the care. The caregiver, who is not the patient, is in a situation where things could fall through the cracks,” Tolbert said, mentioning that clinicians should refer caregivers to outside resources — such as those found online and in the community – if they cannot provide them themselves.
“It’s kind of been like putting the pieces of the puzzle together and putting everyone on the same page—that’s what we’re aiming to do,” he said.