October 2016, Vol. 5, No. 8

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Caring About Caregivers: Implementing Formal Caregiver Support Programs

Palliative Care

At the 2016 Palliative Care in Oncology Symposium, the message was clear and emphatic: We should care about caregivers as both co-deliverers and co-recipients of healthcare services.

“Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”

These tasks are related to symptoms, medications, breathing treatments, ostomy, wound care, gastric tube feeding, and catheterizations, among others. Although these nursing services are often performed in a hospital, according to a survey conducted by the National Alliance for Caregiving in partnership with AARP, 72% of cancer caregivers deliver these services at home, despite a lack of preparation or training.

It’s not just medical and nursing tasks; caregivers are responsible for appointment coordination, transportation, home maintenance, meal preparation, and activities of daily living. An 11-state survey showed that advanced cancer caregivers work up to 76 hours a week for 18 months.

“It’s estimated that advanced cancer caregiving is worth $71,000 a year,” said Dr Dionne-Odom. “The idea that this unpaid work could be replaced with paid professionals is unrealistic.”

According to a RAND Corporation study, the cost of informal caregiving for the elderly in the United States is $522 billion per year, which is more than the annual Medicare budget, but cancer caregiving poses a serious threat to health as well. Approximately 40% of caregivers experience anxiety, 16% have signs of depression, and 25% are under financial strain, but only half of caregivers are ever asked what they need, said Dr Dionne-Odom.

“Caregivers need practical help with home-based activities of daily living, navigating healthcare systems, transportation, finances, balancing the needs of patients with their own, and maintaining their own health. They also need information on cancer diagnosis, progression, prognosis, and management of symptoms and medications. Finally, caregivers need help making end-of-life decisions and managing their own emotional and physical stress,” he explained.

Integrating caregiver support in formal healthcare systems remains a huge challenge, said Dr Dionne-Odom, because the system is not incentivized to take care of caregivers, but simple steps can be taken to provide psychosocial support.

“Caregivers often feel underappreciated in their role,” he said. “Simply acknowledging their sacrifice and recognizing them as a member of the healthcare team can go a long way toward making them feel included.”


In the ENABLE III (Educate, Nurture, Advise, Before Life Ends) trial, which took place between October 2010 and March 2013, cancer caregivers were randomly assigned to receive 3 structured weekly telephone coaching sessions, monthly follow-up, and a bereavement call, either early after enrollment or 3 months later.

In the first session, family caregivers were asked to talk about themselves and their experience as caregivers. In the second, self-care and symptom management–for their patients and themselves–were discussed along with dealing with depression, grief, and loss. In the third phone session, the focus was on communication and decision-making: developing a support network, making medical decisions, and implementing advance care planning.

As Dr Dionne-Odom reported, caregivers in the early group had lower depressed mood (P = .02) and lower stress burden (P = .01) at 3 months, with a trend toward improved quality of life (P = .07). These results, he said, confirm what’s been anecdotally observed for years: in order to maximize benefits, palliative care for caregivers should be initiated as early as possible.

“If we wait to intervene with family caregivers when they’re in the ICU, they are already exhausted and have been down many stressful paths,” he concluded. “On the other hand, if we can do this at diagnosis and catch them when they’re still relatively healthy and calm, then it’s much easier to teach the coping skills they will need later.”

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