Digital Tool Reduces Burden, Improves Mood for Cancer Hospice Caregivers

Using a Symptom Care at Home (SCH) intervention significantly reduced caregiver burden, compared with usual hospice care (UC), according to a study from the journal Cancer.

“Symptom care at home is a communication and support plan platform, a digital health kind of tool that bridges the communication gap between patients — and caregivers in this case — and their provider team in terms of being supported with symptoms,” explained Kathi Mooney, a registered nurse, study author and distinguished professor in the college of nursing at the University of Utah.

“Symptoms fluctuate, they come and go, and they don't just happen during a clinic visit. The issue is how to address them. Ideally how to keep them minimal and then to have a response system when in fact they do escalate, so symptom care at home was developed,” she said.

The use of SCH was accessed via a digital tool that did not require internet on a device, in which the caregiver recorded patient symptoms over the course of 24 hours, Mooney said. In addition to patient symptoms, the SCH also asked how the caregiver was doing in five areas.

“We asked them how anxious they were, how much they felt down or depressed, how fatigued they were, how well they were sleeping and how much taking care of the patient in the last 24 hours interfered with other things that they normally do,” Mooney explained.

She noted that based on their responses, the tool would have verbal coaching on how to incorporate caregiver needs into the day.

“Based on what [the caregiver] said [with] how they were doing, [it would coach them]. If they're having trouble with sleep, it would give them coaching on how to improve their sleep. So, it was very much a comprehensive effort to support caregivers in helping take care of their family members, and also how to take care of themselves.

In the study, researchers included 365 pairs of patients and caregivers and were randomized to use either the SCH (179 pairs of patients and caregivers) or UC (186 pairs). Among the caregivers, 176 were spouses/partners and 119 were adult children.

Researchers found that moderate-to-severe symptoms were common among caregivers, including fatigue in 82% of caregivers, caregiving interference in 78%, anxiety in 77%, trouble sleeping in 74% and depressed mood in 69%.

Taking care of a member who is in hospice cancer care 24/7 often “falls to the family,” Mooney said, which can increase the burden caregivers experience.

“The health care system provides episodic consultation and help but the day-to-day ‘What should I do at 10 p.m. when the pain medicine isn't working?’ falls to the family. While there is backup by the hospice team in terms of visits and phone backup for problems as they arise, it really is the family caregivers who provide the medications, the psychosocial support and all those other kinds of care duties,” Mooney said.

“It is very draining to the family and draining also because they're about to lose their family member,” she noted. “And so, they also have their emotional components that drive wanting to do a good job and feeling ill-prepared.”

Mooney advises caregivers of patients with cancer in hospice care to “give themselves credit for what they're trying to achieve,” especially during a time that can be extremely stressful.

She emphasized that it isn’t selfish for caregivers to get proper sleep, eat proper meals on time, take their medications or step away for a couple of hours.

“It's being able to really be there for the person, and that you do better when you have support,” Mooney said. “So both social support, but also that you involve the care team so know what your needs are, as well.”

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