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More than 1 million children in the USA take care of sick or disabled relatives, shopping, feeding, dressing, medicating and even changing adult diapers, a government-financed study finds. It is the first to document what advocacy groups call a hidden national problem.
The 1.3 million to 1.4 million child caregivers, ages 8 to 18, have responsibilities more suited to adults, the national survey says. It will be presented at a conference Friday by the National Alliance for Caregiving and the United Hospital Fund, with financing from the U.S. Administration on Aging.
"This is a failing of our health-care system," says Gail Gibson Hunt, president of the alliance, a non-profit coalition of family groups.
It estimates that 44.4 million adults in the USA provide unpaid care for another adult. But child caregivers largely have remained hidden and often stay silent because they fear being separated from parents.
"We know that children have always played a role in assisting their families, especially in minority communities where they frequently act as interpreters and care for their siblings," says Josefina Carbonell, Assistant Secretary for Aging in the Department of Health and Human Services. "Yet this report reveals that a significant percentage of these children are providing much more personal and complex tasks."
Most care for parents and grandparents who have ailments such as Alzheimer's disease and cancer. At least 75% get some help, but half say they spend a substantial amount of time caregiving. And even those who are not the primary caregiver perform many tasks by themselves.
"Sometimes lower- to mid-income families really fall through the cracks," says Nancy Law of the National Multiple Sclerosis Society, which assists young caregivers.
According to the study, 58% of child caregivers help with at least one routine daily activity, such as bathing, dressing, getting in and out of beds and chairs, eating, and using the toilet or changing adult diapers. Nearly all help with shopping, household tasks and meal preparation, the report says.
"This is a problem we have not even recognized, much less started to address," says Hunt, who will present the findings at the conference on Friday. "These kids are vulnerable."
The report was based on two surveys by Mathew Greenwald & Associates. The first was a random phone survey of 2,000 U.S. households in September 2003 to determine the prevalence of child caregiving. The margin of error was 1 to 2 percentage points. A second survey did phone interviews with 213 child caregivers and 250 non-caregiving children. The margin of error was 6 and 7 percentage points, respectively. Results were similar to studies done on caregivers in the United Kingdom.
A young caregiver tells
her story, 5D
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