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For Many Americans, Caregiving a Long-Distance Burden
Date:8/31/2011

pital's Case Medical Centers Seidman Cancer Center. "It's just a real challenge."

To start finding out what these challenges were, Mazanec and her colleagues interviewed 14 caregivers of parents with advanced cancer. The caregivers lived at least 100 miles from their ailing parents.

"Across the board, folks were pretty consistent in what they were telling us," said Mazanec, who is also an advance practice oncology nurse at University Hospital's Case Medical Center's Seidman Cancer Center, also in Cleveland. "The biggest concerns were that they didn't know what's going on and felt very disconnected. They felt very much out of the loop."

They also weren't sure when was the best time to visit -- at the time of surgery or beginning of chemo -- and when they did arrive were often shocked at the changes they saw in their mom or dad.

The far-away relatives tended to mistrust information they were getting second- or third-hand from siblings or other parents, feeling that these relatives might be trying to protect them.

That's when they started asking questions about what was being done and what more could be done, upsetting their sisters, brothers and other family members who were nearby and had already been over this ground, perhaps several times.

But Mazanec feels that health care providers can do much to ease the distress of these "seagulls" and "pigeons," and thus reduce much of the distress to all parties.

Perhaps most importantly, more avenues of communication need to be opened up, she said.

"With patient permission, there's no reason why we couldn't share information [with the long-distance caregivers]," Mazanec said. "They want to hear from us what is really happening and not to have it watered down. They can certainly seek out the health care team if the health care team hasn't sought them out. Call. Email. Let them know they're out there."

"There's no reason why they can't be active participants in the care
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