Many families devote substantial amounts of time to their children’s health care. They may participate in providing health care to their children through such tasks as administering medications and therapies, maintaining equipment, and providing transportation to appointments. Families also spend time arranging or coordinating care for their children by making appointments, making sure that care providers are exchanging information, and following up on their child’s health care needs. While the families of 47 percent of CSHCN spend less than an hour a week on these activities, the families of 34 percent devote 1 to 4 hours a week to these tasks, and the families of 10 percent spend 11 hours a week or more.
The self-reported time burden is greatest on low-income families. The families of nearly 19 percent of poor children spend at least 11 hours per week providing, arranging, or coordinating their children’s health care, compared to the families of 4.3 percent of children with family incomes of 400 percent of the poverty level or more.
The greater the impact of a child’s condition on his or her functional ability, the more time the family spends on the child’s care. The families of 24 percent of children whose activities are affected usually, always, or a great deal by their conditions spend 11 hours or more providing, arranging, or coordinating their care, compared to the families of only 3.2 percent of children whose daily activities are never affected by their conditions.