Cancer caregivers often face great burdens, work long hours

Informal caregivers for patients with cancer tended to report a higher burden and spent more hours per week caregiving than caregivers of patients with other illnesses, according to study results presented at the Palliative Care in Oncology Symposium.

Further, cancer caregivers often felt uninformed about end-of-life care.

“Our research demonstrates the ripple effect that cancer has on families and patient support systems,” Erin Kent, PhD, MS, program director in the Outcomes Research Branch of the Healthcare Delivery Research Program of the NCI, said in a press release. “Caregiving can be extremely stressful and demanding — physically, emotionally and financially. The data show we need to do a better job of supporting these individuals as their well-being is essential to the patient’s quality of life and outcomes.”

Kent and colleagues sought to determine whether cancer caregivers differed with regard to communication with health care providers and the need for information about end-of-life care compared with caregivers of patients without cancer.

Researchers used data from the Caregiving in the U.S. 2015 dataset, an online probability-based panel study of unpaid adult caregivers of patients with and without cancer from across the country. Seven percent (2.8 million) of the caregivers in the dataset indicated cancer as their primary reason for providing care.

Overall, caregivers of patients with cancer appeared 63% more likely to experience a higher care burden than noncancer caregivers. Further, cancer caregivers worked more hours per week (32.9 vs. 23.9).

A greater proportion of cancer than noncancer caregivers reported that they communicated with health care professionals (82% vs. 62%), monitored or adjusted care (76% vs. 66%), and advocated for the patient (62% vs. 49%).

Forty percent of cancer caregivers reported that they needed more help or information making end-of-life decisions compared with 21% of noncancer caregivers.

Collecting data on caregivers is often difficult; thus, these population-level findings contribute important information to the available research, Kent said.

However, more research is still needed, she added.

“Based on our findings, it’s clear we need additional research on caregiving to better understand at what point providers and clinicians should intervene to assess the wellbeing of caregivers,” Kent said. “Technology, combined with use of a clinical distress rating system, could be promising in the future as a means to ensure caregivers are being supported in a meaningful way.” – by Alexandra Todak

Reference:

Kent EE, at al. Abstract 4. Scheduled for presentation at: Palliative Care in Oncology Symposium; Sept. 9-10, 2016; San Francisco.

Disclosure: This study was funded by the Cancer Support Community, National Alliance for Caregiving and the NCI. Kent reports no relevant financial disclosures. Please see the abstract for a list of all other researchers’ relevant financial disclosures.