Report Underscores Burden of Intense, Episodic Cancer Caregiving

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.

Many patients with cancer require help with ADLs, including getting in and out of bed and chairs, getting to and from the toilet, getting dressed, help with eating, bathing, or showering, and dealing with incontinence. On average, cancer caregivers help their loved one with 2.4 of 6 ADLs, and half of cancer caregivers report helping with 3or more of these activities. Non-cancer caregivers provide help, on average, with 1.6 ADLs.

Many patients also need assistance with IADLs, such as transportation, housework, shopping, preparing meals, giving medicines, managing finances, and arranging outside services. Cancer caregivers perform 4.6 out of 7 IADLs compared with non-cancer caregivers, who perform approximately 4.2.

Medical Responsibilities of Cancer Caregivers

Cancer caregivers interact extensively with numerous providers, agencies, and professionals. Approximately 82% of cancer caregivers communicate with healthcare professionals about their loved one; 76% monitor the severity of the patient’s condition and adjust care accordingly, and 62% advocate for their recipient with healthcare providers, community services, and government agencies.

In addition to assisting patients with everyday activities, caregivers are often called upon to perform medical tasks normally done by a nurse or physician, such as administering injections, tube feedings, and catheter and colostomy care. Seventy-two percent of cancer caregivers perform medical/nursing tasks, a significantly higher percentage than was found among non-cancer caregivers (56%). Many caregivers as a whole do the tasks without any prior preparation (43%).

Although nearly three-fourths of cancer caregivers reported feeling included in medical discussions during their loved one’s hospital stay, only 54% reported being asked by a medical professional what they needed to help tend to the care recipient, leaving almost half of cancer caregivers without the support necessary to care for their loved one.

Furthermore, few cancer caregivers (29%) reported that their own self-care needs were addressed by healthcare providers, a number that is rather alarming, considering half of cancer caregivers experience high levels of emotional stress, with 50% rating their stress as 4 or 5 on a 1 to 5 scale. On the other hand, only 37% of non-cancer caregivers reported finding providing care to be emotionally stressful.

Cancer Caregiving Impact on Employment

For caregivers who still work, many jobs provide benefits such as flexible work hours (57%) and paid sick days (48%). On average, 63% of cancer caregivers report having to make accommodations in the workplace due to their caregiving role. These include coming in late, leaving early, or taking time off to provide care (48%); going from full- to part-time work or cutting back hours (24%); or taking a leave of absence (19%). However, 73% of cancer caregivers reported that their employers knew of their caregiving responsibilities compared with 55% of non-cancer caregivers.

Treatment for all illnesses can be expensive, but this dilemma is especially prevalent to patients with cancer, according to Hunt.

"Families can go bankrupt trying to deal with all of the expenses that may come with cancer treatment,” with the caregiver often feeling the need to leave work in order to be a caregiver for their loved one. “That’s something that has huge repercussions financially,” she continued, not just in the near-term—for example, loss of salary—but in the future, as caregivers experience reductions in pension and social security benefits they will need when they retire.

All Caregivers Need More Support

Cancer caregivers and non-cancer caregivers alike want more help and information regarding managing their own emotional and physical stress (43% and 42%, respectively), making end-of-life decisions (40% and 21%), and keeping the care recipient safe at home (33% and 42%).

The report’s authors note that the findings suggest a need for a multifaceted plan to assist caregivers, for example:

• Training materials to assist caregivers with performing ADLs, IADLs and various medical tasks
• Training healthcare professionals to involve the patient and caregiver in shared decision making
• Developing an assessment to determine the needs/distress levels of the caregiver
• Referring the caregiver to different supports to help with their emotional stress

“Caregivers should think about the fact that they need to take care of themselves,” Hunt said. “They really need to seek out that balance of being able to care for this person during this intense period, and also have some time for themselves and look after their own health.”

The full report, “Cancer Caregiving in the U.S.—An Intense, Episodic, and Challenging Care Experience,” can be accessed here.