Families provide billions in unpaid medical care to children with chronic conditions

New study shows the financial burden of family-provided medical care for chronically ill children.

A new study examined the financial burden that parents face when caring for a chronically-ill child at home.
Researchers from Boston Children’s Hospital and the University of Southern California tracked the cost of providing medical care at home for children with chronic health conditions by uncompensated family members.
The study found that with an estimated 5.6 million U.S. children with chronic health conditions, families pay billions of dollars providing care at home.

The costs have risen because many more medical tasks are being provided at home by family members compared to a few decades ago. These medical tasks range from maintaining and operating feeding and breathing tubes to administering physical therapy.

“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,” Dr. Mark Schuster, Ph.D., chief of general pediatrics at Boston Children’s Hospital and senior investigator on the study, said in a press release. “Parents want to do everything they can for their children, but it can be a real challenge to juggle their ill child, their other children and sometimes their job.”

Schuster and his team used data from the 2009-2010 National Survey of Children with Special Health Care Needs that showed about 20 percent of households with children had at least one child with special needs.

The new research analyzed data from the NS-CSHCN and found that the average child with special needs received 5.1 hours of medical care per week from family members for a total of 1.5 billion hours nationally.

Results showed that nearly 12 percent of children in the study received 21 or more hours of family-provided medical care a week. Children from poor or Hispanic families or who were under 5, were more likely to receive care at home.

The study broke down the hours of care per type of condition with cerebral palsy patients needing 14.4 hours per week, muscular dystrophy patients needing 13.8 hours per week, cystic fibrosis patients needing 12.9 hours per week, children with intellectual disabilities needing 11.2 hours per week and children with traumatic brain injuries needing 11.9 hours per week.

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

The study found that family caregivers lose an estimated $3,200 in earnings per child each year, totaling $17.6 billion in lost income nationally. Hiring health aides to perform the same tasks would cost roughly $6,400 per child each year or $35.7 billion nationally. For unskilled, minimum-wage aides, the cost would be $2,100 per child per year or $11.9 billion nationally.

Researchers found that programs like paid family leave, improved care coordination, providing respite care and home visits by clinicians would ease the burden on family members.

The study was published in Pediatrics.

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