For caregivers of heart failure patients, challenges mount in rural areas

By American Heart Association News

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Living in a rural area increases the difficulty of caring for someone with heart failure, according to new research.

An estimated 6.5 million U.S. adults ages 20 and older have heart failure, a serious condition that develops when the heart can't pump enough blood and oxygen to support other organs in the body. People with heart failure often experience fatigue and shortness of breath, which can make daily activities difficult.

The study, presented recently at the American Heart Association's Scientific Sessions meeting in Chicago, surveyed 530 caregivers of people with heart failure living in the U.S., Canada and parts of the U.K.

Researchers found that caregiver burden — the stress caregivers perceive about their caretaking role — was three times higher for every extra task that rural caregivers reported compared to urban caregivers.

The study's lead author Dr. Lucinda Graven, an assistant professor at Florida State University College of Nursing in Tallahassee, said health care providers often don't account for geographic location when working with heart failure patients and caregivers.

Graven noted that logistical issues such as transportation can impact care if patients and caregivers don't own cars. She said that's the case for some of her own heart failure patients, which makes getting to appointments difficult.

"I don't think we're considering what rural patients and caregivers have to work with when we're making decisions in the clinic," Graven said. "We need to help them determine the resources they need, and how to get them."

Most of the caregivers surveyed were white. Nearly half were spouses of the patient, and half were men. Their average age was 41.

Caregivers answered questions about the tasks they performed, including shopping and housekeeping; managing health insurance forms, doctor's appointments and prescriptions; and helping patients bathe, dress and use the toilet. Caregivers were also asked about the social support they received and their problem-solving skills, family satisfaction and mental health.

The study could not determine why it was more difficult for caregivers in rural areas. But Dr. Sandra Dunbar has some guesses.

Dunbar, the senior associate dean at Emory School of Nursing in Atlanta who was not involved with the study, said people in rural communities tend to have lower incomes and are farther away from medical care, which could contribute to the problem. They also can be isolated from other family members or the community, she said.

Patients who require hospitalization may have to travel hours to get to the closest facility, further isolating them from family or community support, Dunbar said.

"You can imagine how anxiety-provoking that is, especially when you're farther from home," she said. "I've seen caregivers basically camped out in the family waiting room, sleeping there for days because they don't have the ability to go back and forth. Personally, it's heartbreaking, and I applaud hospitals that have added greater support for these types of situations."

Find more news from Scientific Sessions.

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