Valuing family-provided medical care for children with special health care needs

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About half of U.S. children with special health care needs — approximately 5.6 million — receive medical care from uncompensated family members. According to a recent study led by Boston Children’s Hospital and the University of Southern California (USC), the impact of in-home care is costing families billions.

The study published online by the journal Pediatrics, says U.S. families provide 1.5 billion hours of in-home care annually, resulting in $17.6 billion in lost wages from unpaid time providing care and time off from work.

“Parents want to do everything they can for their children, but it can be a real challenge to juggle their ill child, their other childrenIf parents did not provide this care at home, children would need to stay in the hospital longer, professionals would need to come to the home, or children might not get the care that their physicians prescribe.” and sometimes their job,” says Mark Schuster, MD, PhD, chief of General Pediatrics at Boston Children’s and senior investigator on the study. “If parents did not provide this care at home, children would need to stay in the hospital longer, professionals would need to come to the home, or children might not get the care that their physicians prescribe.”

The study also cites replacement costs: To hire health aides to do the same work at typical compensation rates would cost an estimated $6,400 annually per child, or $35.7 billion nationwide. For unskilled, minimum wage help, the figures would be $2,100 and $11.9 billion, respectively.

“Children with chronic health conditions require a significant amount of care, and hiring a home health aide can be prohibitively expensive for a family,” says John Romley, PhD, an economist at the USC Leonard D. Schaeffer Center for Health Policy and Economics and lead author of the study. “To maintain their child’s care, families often incur financial and emotional stress from reduced earnings.”

Compared with a few decades ago, families of children with chronic conditions perform many more medical tasks at home, from maintaining and operating feeding and breathing equipment to administering physical therapy. Not only are more children with chronic conditions surviving, but they are also being discharged earlier from the hospital. The additional financial burden of home care weighs heavily on many families, says Schuster, who is also Professor of Pediatrics at Harvard Medical School.

Valuing home caregivers

The National Survey of Children with Special Health Care Needs, a telephone-based survey, has estimated that 20 percent of households with children have at least one child with special health care needs. The new study analyzed data from the 2009-2010 survey and found that the average child with special health care needs received 5.1 hours of medical care per week from family members. This excluded any extra time spent assisting children with activities of daily living. For some conditions, the average was much higher:

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Nearly 12 percent of children in the study received 21 or more hours of family-provided care per week. These children were more likely to be poor or Hispanic or to be under the age of 5, the study finds.

The researchers suggest several ways to help family medical providers: paid family leave programs, improving care coordination, providing respite care and home visits by clinicians.

“We need to do a better job of training family caregivers in how to take care of their children at home, and we need better supports for them,” says Schuster.

Read the paper published online in Pediatrics.