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Report Underscores Burden of Intense, Episodic Cancer Caregiving

Thursday, June 30, 2016
Gail Gibson Hunt

Gail Gibson Hunt

Caring for loved ones in the midst of major health issues is taxing for anyone, but a new report reveals that caregivers of patients with cancer experience even more stress and responsibilities than caregivers of patients with other diseases.

The report by the National Alliance for Caregiving, conducted in partnership with the National Cancer Institute and the Cancer Support Community, compiles cancer-specific data from the Caregiving in the U.S. study, a joint project of the National Alliance for Caregiving and AARP Policy Institute.

This survey found that cancer caregivers perform more activities of daily living (ADLs), instrumental activities of daily living (IADLs), and medical tasks than non-cancer caregivers. They also report having high emotional stress levels, but currently, “there are very few assessments of the caregiver’s needs,” and efforts to specifically support them, explained Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving, in a recent interview with Oncology Nursing News:

“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.”

Hunt explained that cancer caregiving often involves assisting the patient/survivor with personal care activities, including bathing, dressing, and feeding, as well as medical and nursing tasks, including administering injections and wound care, insofar as the majority of cancer caregivers (80%) reported their family member had been hospitalized in the last year, compared with 52% among non-cancer caregivers. “A really high portion of family caregivers were given medical tasks to perform without any appropriate training for the task,” she continued.

“There is also a lot of emotional stress that comes with caring for someone with cancer ... anecdotally, we hear from cancer caregivers about this feeling of waiting for the other shoe to drop—waiting and being concerned about the cancer returning.”

Cancer Caregiving: A Closer Look
The report is based on data from 1164 non-cancer caregivers and 111 cancer caregivers. In addition to providing insight into some of the particular aspects of cancer caregiving, the report offers a statistical snapshot of cancer caregivers. Approximately 2.8 million individuals are caring for someone whose main illness is cancer, and most cancer caregivers (88%) are supporting a relative, typically a parent or parent-in-law (44%), a spouse or partner (16%), or a sibling/sibling-in-law (14%). Cancer caregivers also tend to be 4 years older (average age 53 years) than their non-cancer caregiving counterparts, and most are women (58%).

Caregivers of patients with cancer perform their caregiving role for a shorter amount of time compared with their counterparts (1.9 years vs 4.1 years). Additionally, more cancer caregivers have others helping them: 31% report they are the sole caregiver compared with 48% of non-cancer caregivers.

Although the role of a cancer caregiver appears more manageable in these respects, the level of care required for patients with cancer is often more intense than that for patients with other diseases. Cancer caregivers on average dedicate 32.9 hours per week to caregiving tasks whereas for non-cancer caregivers, it’s approximately 23.9 hours. One-third of cancer caregivers devote more than 41 hours per week to caring for their loved one, the equivalent of a full-time job.

Talk about this article with nurses and others in the oncology community in the General Discussions Oncology Nursing News discussion group.
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