Report Finds Families of Cancer Survivors Challenged by Intense, Episodic Caregiving Experiences
A new report shows that people caring for a loved one with cancer often have more intense, episodic caregiver responsibilities than those caring for someone with other health needs. The report, from the National Alliance for Caregiving in partnership with the National Cancer Institute and the Cancer Support Community, draws on a nationally representative data set to identify the special challenges of a friend or family member caring for a loved one with cancer.
“Cancer affects not just the person who has the disease, but also the family and friends who surround that individual,” noted Margaret Longacre, PhD, of the Cancer Support Community, a contributing author to the report. “Many cancer caregivers are being asked to take on medical nursing tasks without prior preparation, face intense emotional and physical stress, and struggle with end-of-life decision-making.”
In addition to describing the cancer caregiving population through new statistics on their daily activities, the report compares cancer caregiving to other types of caregiving. Based on these findings, researchers offered a series of recommendations for future research and support.
“When we look at the experience of cancer families compared to caregiving across the board, cancer caregiving tends to be much shorter in duration, but more intense and challenging,” explained Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving. “When you care for someone with cancer, you may have a very intense episode of taking that person to the hospital, supporting them through chemotherapy, or other caregiving tasks. It can be difficult to get support from your employer or to cover the cost of care during that time.”
The report includes statistics and analysis on the challenges facing family caregivers, as well as recommendations for future support. Highlights include:
- Approximately 2.8 million people are caring for someone whose main problem or illness is cancer.
- The typical cancer caregiver is a 53-year-old woman, typically with less than a college degree and less than $75,000 in household income.
- Most cancer caregivers support a relative (88%), usually a parent or parent-in-law (44%), a spouse or partner (16%), or a sibling or sibling-in-law (14%).
- A primary role of cancer caregivers is to interact with health-care providers, agencies, and professionals on behalf of their loved one: 82% communicate with health-care professionals on behalf of the care recipient; 76% monitor the severity of their loved one’s condition; and 62% advocate on behalf of their care recipient with providers, community services, and government agencies.
- A high majority of cancer caregivers (80%) report that the care recipient has been hospitalized at least once in the past year, an event significantly less common among noncancer caregivers (52%).
- Cancer caregivers typically have “helpers” in care—almost 8 in 10 report that their loved one lives with another person, and 7 in 10 report that others help provide unpaid care.
- The typical cancer caregiver provides care for just under 2 years (1.9) compared to caregivers for other conditions, who typically provide care for an average of 4.1 years.
- Cancer caregivers, on average, are spending 32.9 hours a week providing care to their loved one, and nearly a third of cancer caregivers provide care for 40 hours a week or more.
- Compared to noncancer caregivers, cancer caregivers are much more likely (72%) to be conducting medical and nursing tasks for their loved one. More than 4 in 10 of these caregivers provide help with medical and nursing tasks without any prior training or instruction.
- Caring for someone with cancer is more emotionally stressful than other types of caregiving. Fifty percent of cancer caregivers report that they felt “highly stressed.” Four in 10 caregivers report that they need help managing emotional and physical stress.
- One ongoing challenge for cancer caregivers is the need for support during advanced stages of illness, with 40% of caregivers indicating that they needed help making end-of-life decisions.
“This report highlights how caregivers of cancer patients and survivors have many shared but also some unique characteristics with caregivers for other medical conditions,” explained Erin Kent, PhD, of the National Cancer Institute, a contributor to the report. “It also supports the need for more research to determine the best approaches to assist cancer caregivers, manage the many tasks they juggle to help take care of their loved ones, and preserve their own well-being.”
The full report is available at http://www.caregiving.org/cancer.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
