PhotoFamilies of children with special health care needs often spend countless hours providing medical care at home, and these hours can quickly add up. A new national study finds that the amount of time parents spend caring for children with special needs results in staggering amounts of unpaid work.

The study, led by Boston Children’s Hospital and the University of Southern California (USC), finds that U.S. families of children with special health needs provide $36 billion dollars in uncompensated care each year.

While advances in care have enabled parents of limited means to perform medical tasks at home, parents aren't reimbursed for their hours of dedicated care. The new study is the first to track and assign a value to parents’ unpaid time providing care.  

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

Hours per week

To conduct the study, researchers analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs. The investigators found that about half of children with special health care needs (5.6 million) received 5.1 hours of medical care per week from family members, but many received much more care on a weekly basis if they suffered from the following conditions:

  • Cerebral palsy: 14.4 hours per week

  • Muscular dystrophy: 13.8 hours per week

  • Cystic fibrosis: 12.9 hours per week

  • Intellectual disability 11.2 hours per week

  • Traumatic brain injury/concussion: 11.9 hours per week

These totals would likely be much higher if the study had also tracked the number of hours caregivers spend assisting the children with routine tasks such as bathing and dressing, the researchers said.

Offsetting costs

Providing care often requires parents to miss work and lose potential earnings, resulting in about $3,200 in lost earnings each year per child. Additionally, the researchers noted that out-of-pocket health care costs for a special health-needs child are three times more expensive than those for children without any special conditions.

To help offset costs, the authors say employers could begin offering incentives to adopt flexible work schedules or shared-leave programs for employees. Paid family leave programs, improved care coordination, and home visits by clinicians could also help families of children with special health needs.

"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," said Mark Schuster, chief of General Pediatrics at Boston Children's Hospital and senior investigator of the study.

The study has been published in the journal Pediatrics.

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