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Caregivers not receiving the help they need, study shows
Date:2/12/2009

WINSTON-SALEM, N.C. Caregivers of children with special health care needs often do not get the respite care they need, according to the findings of a recent study by researchers at Wake Forest University Baptist Medical Center.

Researchers found that families with private insurance have more unmet respite care needs than those with public coverage. They also found that families or caregivers who need respite care the most those caring for children with the most severe functional limitations and unstable conditions often do not get it.

"This is an issue that doesn't get a lot of attention," said Savithri Nageswaran, M.D., M.P.H., lead researcher for the study and a pediatrician at Brenner Children's Hospital of Wake Forest Baptist.

The study grew out of discussions among members of Forsyth County's Pediatric Community Alliance, a coalition of parents, professionals and organizations committed to improving the quality of care for children with serious illnesses.

Nageswaran directs the pediatric palliative care program at Brenner Children's Hospital, a program that serves children with complex needs. These children are surviving and living longer today because of advances in technology, Nageswaran said. There has also been a shift from caring for children with complex needs in institutions to caring for them in the community, she added.

However, these patients have complicated health problems that require caregivers to use complex technology at home, Nageswaran said. The same health issues often also require the children to take 10 to 15 different medications, which means family members have to be alert every few hours to administer them.

Respite care, or temporary relief from caregiving, provides much needed help to families and caregivers in the form of a break from caregiving duties.

"These parents have to go through so much," Nageswaran said. "They do it with a lot of love. But caregiving is
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Contact: Rae Bush
rbush@wfubmc.edu
336-716-6878
Wake Forest University Baptist Medical Center
Source:Eurekalert

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