University of Missouri - Columbia.
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Posted 10.10.05

Researcher Says 'Care Coordinators' Would Benefit Children with Chronic Disease

Study Found Families Cope Better, Have Less Stress

COLUMBIA, MO -- Caring for children with chronic illnesses and disabilities can take a large financial, physical and emotional toll on parents, especially when trying to negotiate bureaucratic processes and mountains of paperwork that can be difficult to understand. One University of Missouri-Columbia researcher found that having one person to help parents and their child's physician coordinate care decreased the strain on caregivers, resulting in more satisfaction with the healthcare industry, decreased stress and fewer missed workdays.

"If you make changes in the system, you can make changes in families," said Janet Farmer, professor of health psychology and director of the Thompson Center for Autism and Neurodevelopmental Disorders, whose study was published in this month's edition of the journal Pediatrics. "Making the system more effective and efficient may not improve the child's health outlook, but it has a significant and positive impact on families."

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Farmer's three-year study followed 51 children with chronic conditions, such as diabetes, cerebral palsy or autism, who ranged in age from birth to 18 years old. Farmer and her team would make one home visit and discuss with the parent what the child and family needed. The team partnered with the child's primary care physician to develop a written health plan, provided connections to information and resources, and assisted with complex issues, such as ways to obtain additional funding for medical bills.

Using a team approach that included one person who helped coordinate the care and a consulting parent who had experience caring for a child with a chronic health condition, Farmer observed the stress levels in families drop considerably. In addition, parents missed less work and children attended more days at school following the intervention.

"Ten percent of all children account for 70 percent of children's health care expenditures," Farmer said. "It can be very stressful for parents to care for their children. Those living in rural areas may be the hardest hit. Providing them with the right resources, coordinating appointments and explaining how to obtain funding or more information can help parents deal with stress."

This research was supported by a grant from the Robert Wood Johnson Foundation and the Missouri Department of Health and Senior Services. Farmer is now expanding the study to 16 counties in Missouri with funding from the Missouri Foundation for Health and Missouri Care Health Plan. This will allow her to learn more about the unique needs of families living in rural areas and to investigate the impact of care coordination on the cost of children's health care.



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