Report Underscores Burden of Intense, Episodic Cancer Caregiving

Thursday, June 30, 2016
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.

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