Caregivers may lack help caring for disabled kids

By Joene Hendry

NEW YORK (Reuters Health) - Among respondents to a national survey on children with special healthcare needs, nearly 9 percent of caregivers indicated a need for respite care.

However, about a quarter of these caregivers’ needs may go unmet, Dr. Savithri Nageswaran, of Wake Forest University School of Medicine in Winston-Salem, North Carolina found.

“Respite care seeks to decrease caregiver burden by giving them a break in caregiving,” Nageswaran told Reuters Health.

“Respite care is an important issue in the care of children with special needs,” Nageswaran said, particularly since more and more children with complex conditions survive and are cared for at home.

Nageswaran used data from the 2001 National Survey of Children With Special Health Care Needs to determine the need for respite care as well as factors associated with unmet needs.

According to a report in the Archives of Pediatric and Adolescent Medicine, 8.8 percent of the 38,831 caregivers surveyed said they needed respite care during the prior 12 months.

However, 24 percent — 774 of the 3178 caregivers who said they needed respite care — did not receive this assistance, and multiple factors, it seems, are to blame.

For instance, caregivers of children with public or other insurance were half as likely to report unmet respite care needs compared with caregivers of children with private insurance or those with insurance gaps or uninsured.

Caregivers of children with severe and some functional limitations were significantly more likely to have unmet respite care needs than caregivers of children with no limitations.

Caregivers of children with unstable health were twice as likely to report unmet needs versus caregivers of children with stable health.

Nageswaran calls for future studies to assess whether The Life Span Respite Care Act of 2006, legislation passed to help family caregivers access affordable respite care, has decreased unmet needs.

“There are powerful economic and social arguments for providing more respite care,” notes Dr. John M. Neff, in a related commentary. Few safety nets exist to assist parents who suffer exhaustion, financial difficulties, or face a lack of visiting nurse services, noted Neff, of Seattle Children’s Hospital in Washington.

SOURCE: Archives of Pediatric and Adolescent Medicine, January 2009

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