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Caregivers not receiving the help they need, study shows

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 not an easy task, and families need help caring for their children with special needs."

For the study, Nageswaran analyzed data collected from the 2001 National Survey of Children with Special Health Care Needs. The study used a random sample of U.S. households with children younger than 18. The findings, recently published in the Archives of Pediatrics & Adolescent Medicine, showed that 24 percent of caregivers who need respite care have unmet needs.

Caregivers of children with severe functional limitations had greater unmet respite care needs than those without limitations, as did caregivers of children with unstable health conditions versus those with stable health conditions, according to the study. In addition, the study shows that caregivers with public insurance have far fewer unmet respite care needs than those with private insurance. Nageswaran suggested that this may be because many private insurance plans are not comprehensive enough to provide support services such as respite care for children with special needs.

"If it is not enough, we need to advocate for more comprehensive insurance coverage for our children," Nageswaran said.

The American Academy of Pediatrics recommends that support systems are in place to help caregivers of children with special needs. Yet, the study shows, the respite care needs of one out of four families of caregivers are not met. This translates to approximately 200,000 families with unmet respite care needs in the United States, according to the study.

Of those survey respondents who reported unmet respite care needs, 26 percent reported a lack of availability of services and transportation problems as the reason behind the unmet need, 22 percent said respite care would cost too much and 13 percent reported health care problems as the reason. There are also some caregivers who simply may not report their respite care needs, Nageswaran said, possibly because they feel that seeking such help is "giving up" on the child or because they lack awareness about respite care as a support service.

At a time of ongoing debate around improving the quality of American health care, Nageswaran said, future studies should explore the impact of respite care provisions in decreasing health care and societal costs in providing care to children with special needs.


Contact: Rae Bush
Wake Forest University Baptist Medical Center

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