Families in the United States spend 1.5 billion hours each year providing home health care to their chronically ill or disabled children, a new study shows.
The hours of health care these parents and other family members provide would cost $36 billion if performed by home health workers who received the going rate — or $12 billion if unskilled workers receiving minimum wage were hired, said senior researcher Dr. Mark Schuster.
Parents of chronically ill children are asked these days to provide “the kind of care that, if they weren’t there, the system would have to provide home health care or keep the children in the hospital longer,” said Schuster, chief of general pediatrics at Boston Children’s Hospital. He’s also a professor of pediatrics at Harvard Medical School.
These time-consuming and sometimes technical health care tasks can include maintaining ventilators, performing physical therapy, tracking medication and changing bandages, Schuster said.
“There’s pretty sophisticated stuff that parents are being asked to do once their child gets home,” Schuster said.
All this time spent caring for their sick children adds up to $17.6 billion in lost wages for these families — about $3,200 a child every year, the study authors said.
One in five U.S. families has a child with special health care needs, according to the U.S. Health Resources and Services Administration.
Schuster and his colleagues analyzed data from a survey conducted regularly by the U.S. Centers for Disease Control and Prevention to assess the impact of special health care needs among American children.
The survey used in this study, from 2009-2010, included more than 40,000 parents of children who are chronically ill or disabled.
Overall, there were about 5.6 million children in the United States during this period who had special health care needs, the researchers estimated.
Muscular dystrophy, cerebral palsy, cystic fibrosis, intellectual disability, epilepsy and head injury or traumatic brain injury were the conditions that required the most hours of family-provided health care at home, Schuster said.
The illnesses requiring the most hours are all very complex, he said.
“These are conditions that really involve a lot of support,” Schuster said. “These children often need a lot of help from an adult, and the adult at home is usually the parents.
“A child with cerebral palsy might not be able to get out of bed, he pointed out. “A child with cystic fibrosis may need a lot of treatments at home.”
It’s hard to say how these hours spent caring for a sick child can affect family dynamics and happiness, said Dr. Michael Grosso. He is medical director of pediatrics and chief medical officer for Northwell Health’s Huntington Hospital in Huntington, N.Y.
“In my experience, many parents derive tremendous personal enrichment from the intensive caring they provide, even in the midst of extreme self-sacrifice,” said Grosso, who was not involved with the study.
“But this is not true for all families,” he added. “Marital stress, divorce, job loss and negative social mobility are an unfortunate part of the picture as well.”
Grosso said the study data “also make the case for better quality of care.”
The study shows that 3.9 million of the estimated 11.2 million children with special needs have asthma as their primary condition, Grosso said. These children receive nearly five hours of care on average at home each week from their families.
“We know that the care of this condition could be better than it is, and that accurate diagnosis, medication management, trigger avoidance and action plans can improve school attendance while decreasing the hospitalization rate for asthma sufferers,” he said.
Hospitals and physicians can help parents of ill children by better integrating them into the child’s medical team, Schuster said.
That would involve better training for parents prior to hospital discharge, more back-and-forth communication regarding the child’s progress, easy access to a health care worker for questions that crop up, and intermittent visits from a home care worker or doctor, Schuster said.
Guaranteed paid sick leave or family leave also would help, by removing the financial stress that can come from missing work to care for a chronically ill child, Schuster added.
The new study was published online Dec. 27 in the journal Pediatrics.
For more on children with special health care needs, visit the U.S. Health Resources and Services Administration.
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