A large national study shows that U.S. families provide about 1.5 billion hours annually of at-home care to half the nation’s children with special healthcare needs (CSHCN) — including those with cerebral palsy — representing a substantial economic cost.
The study, “Family-Provided Health Care for Children With Special Health Care Needs,” was published in the journal Pediatrics and is the first to track parents’ unpaid time and income lost while providing care.
“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, chief of General Pediatrics at Boston Children’s Hospital and senior investigator on the study, said in a news 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 colleagues analyzed data from the 2009-10 National Survey of Children with Special Health Care Needs, which included 40,242 parents/guardians of CSHCN. In their analysis, the researchers included socio-demographic characteristics of CSHCN and their households; time spent by family members providing at-home healthcare to children; and the total economic cost of such care. The hours spent by caregivers providing home support were assessed against the cost of hiring an alternative caregiver, and caregiver wages.
About 5.6 million such children received 1.5 billion hours annually of family-provided healthcare, representing an average of 5.1 hours per week, the researchers found. That figure does not include additional time caregivers spent helping the children with daily living activities. The researchers found that the average number of hours was significantly higher with children who have certain conditions:
- Cerebral palsy: 14.4 hours per week
- Muscular dystrophy: 13.8 hours per week
- Cystic fibrosis: 12.9 hours per week
- Traumatic brain injury/concussion: 11.9 hours per week
- Intellectual disability: 11.2 hours per week
The team also reported that nearly 12 percent of the children assessed received 21 or more hours of family-provided care per week, and that those special needs children were more likely to be poor or Hispanic or to be younger than 5.
Researchers found that each year, family caregivers forgo about $3,200 in income per child, amounting to $17.6 billion in lost income nationally. Hiring a home health aide would have cost about $6,400 per child per year, or $35.7 billion in total.
“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 Dr. John Romley, the study’s lead author and an economist at the University of Southern California’s Leonard D. Schaeffer Center for Health Policy and Economics. “To maintain their child’s care, families often incur financial and emotional stress from reduced earnings.”
Based on their observations, the researchers suggested strategies that might help at-home family healthcare providers, including paid family leave programs, improved care coordination, 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,” said Schuster, who is also a professor of pediatrics at Harvard Medical School.