National study documents value of family-provided medical care for children

December 27, 2016, Children's Hospital Boston

About half of U.S. children with special health care needs—5.6 million children—receive medical care from uncompensated family members worth billions of dollars, finds a large national study led by Boston Children's Hospital and the University of Southern California (USC).

The study, published online by the journal Pediatrics on December 27, is the first to systematically track parents' unpaid time providing care, as well as lost income due to parents taking time off from work.

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. Home care is becoming more complex as more children with survive and as hospital stays shorten. The National Survey of Children with Special Health Care Needs (NS-CSHCN), a telephone-based survey, has estimated that 20 percent of households with children have at least one child with needs.

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

Valuing home caregivers

The new study analyzed data from the 2009-2010 Survey, and found that the average child with special needs received 5.1 hours of per week from family members, a total of 1.5 billion hours nationally. This excluded any extra time spent assisting children with activities of daily living. For some conditions, the average was much higher:

  • 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

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.

Lost wages and replacement costs

Family caregivers forego an estimated $3,200 in earnings per child each year, amounting to $17.6 billion in lost income nationally, the study found. Hiring health aides to do the same work at typical compensation rates would have 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 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."

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 at home, and we need better supports for them," says Schuster, who is also Professor of Pediatrics at Harvard Medical School.

Explore further: A new home - but with no medical home? Study of immigrants' kids with special health needs

Related Stories

A new home - but with no medical home? Study of immigrants' kids with special health needs

February 9, 2016
They may have made America their new home, but immigrants whose children have special medical needs appear to be having trouble finding a true "medical home" for their child, a new study finds.

Health-care disparities exist for children with autism spectrum disorders, researcher says

June 11, 2012
Children with Autism Spectrum Disorders (ASD) require an array of specialized health care services. With these services come higher costs for parents and insurance providers. University of Missouri researchers compared costs ...

Health care, home, school differ for children with special health care needs

December 6, 2011
The first federally funded report to compare children with special health care needs to children without reveals 14 percent to 19 percent of children in the United States have a special health care need and their insurance ...

Home health care, post-acute care in a facility infrequent for hospitalized kids

February 22, 2016
Hospitalized children infrequently used home health care (HHC) and facility-based post-acute care (PAC) after they were discharged, according to an article published online by JAMA Pediatrics.

Children with special health care needs and their families have high food insecurity risk

February 9, 2016
Low-income families with children who have special health care needs are at high risk for food insecurity, even when they receive Supplemental Security Income (SSI) and participate in public assistance programs, such as Supplemental ...

Having consistent source of health care is key factor in limiting kids' repeat visits to the hospital

November 4, 2015
It's a question of major importance to parents, health policy makers and health care professionals—and a focus of national health care quality improvement initiatives. What keeps children from being readmitted to hospitals ...

Recommended for you

Baby brains help infants figure it out before they try it out

January 17, 2018
Babies often amaze their parents when they seemingly learn new skills overnight—how to walk, for example. But their brains were probably prepping for those tasks long before their first steps occurred, according to researchers.

NeuroNext biomarker study explores natural history of infantile-onset SMA

January 9, 2018
Research led by The Ohio State University Wexner Medical Center to define the natural history of infantile-onset spinal muscular atrophy (SMA) has been "critical" to accelerate the development of effective therapies and hasten ...

No link between childhood lead levels, later criminality

December 27, 2017
(HealthDay)— Exposure to higher levels of lead during early childhood can affect neurological development—but does that mean affected kids are doomed to delinquency?

Early puberty in girls may take mental health toll

December 26, 2017
(HealthDay)—A girl who gets her first menstrual period early in life—possibly as young as 7—has a greater risk for developing depression and antisocial behaviors that last at least into her 20s, a new study suggests.

Technology not taking over children's lives despite screen-time increase

December 21, 2017
With children spending increasing amounts of time on screen-based devices, there is a common perception that technology is taking over their lives, to the detriment and exclusion of other activities. However, new Oxford University ...

Higher blood sugar in early pregnancy raises baby's heart-defect risk

December 15, 2017
Higher blood sugar early in pregnancy raises the baby's risk of a congenital heart defect, even among mothers who do not have diabetes, according to a study led by researchers at the Stanford University School of Medicine.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.