Caregiver study aims to reduce burden, improve outcomes

July 1, 2013 | by Hiu Chung So

Caregivers are profoundly impacted by their loved ones' cancer diagnosis and treatments, and they themselves are at risk for a variety of problems. These include physical ailments due to neglect of their own health, emotional difficulties arising from their new responsibilities and their loved ones' disease, and financial constraints caused by caregiving expenses and a potential loss of income.

Caregivers' needs are often neglected in healthcare; City of Hope aims to change that with an early intervention strategy. Caregivers' needs are often neglected in health care; City of Hope aims to change that with an early intervention strategy.

Common problems among caregivers are depression, anxiety, lack of sleep, loss of appetite, poor nutrition and lack of exercise, says the federal Centers for Disease Control and Prevention. The CDC also estimates that the typical caregiver spends more than $5,000 each year in out-of-pocket expenses related to caregiving.

For patients and caregivers in poor, underserved populations, these burdens can be magnified. City of Hope hopes to reduce those burdens through an early intervention strategy.

It will be testing that strategy in a study, starting in July, funded by a $1.5 million research grant from the American Cancer Society.

"Family caregivers are instrumental to the well-being and outcome of cancer patients, but they only received minimal attention in the health care system," said Betty Ferrell, Ph.D., R.N., the study's principal investigator and professor in City of Hope's Division of Nursing Research and Education

"Efforts to improve cancer care must go beyond managing the patient's disease and symptoms and include effective family support as well," Ferrell said.

In the study, Ferrell and her team will select 200 family caregivers of City of Hope patients. The participants, from poor and underserved populations, will be randomized into intervention and control groups. In the intervention group, the caregivers will receive regular at-home visits and phone sessions to teach them caregiving skills, be connected to appropriate resources and provided with other relevant support as needed. Those in the control group will not receive any intervention until after the study, at which point they will receive a condensed form of intervention.

Both groups will be evaluated for various outcome measures - including burden, preparedness and quality of life - at the beginning of the study and at one, three and six months afterward.

"We hope this trial's findings will support a comprehensive, interdisciplinary model of care that involves the caregiver," Ferrell said. "By connecting them to appropriate resources in a timely manner, we can boost their caregiving skills and preparedness, reduce their burden and distress and improve their quality of life."

All of which will make them better caregivers to the ones they love.

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