CHILDREN AS CAREGIVERS

Partly paralyzed, with diabetes and colitis, Linda Lent needs extensive care at home. But with her husband working long hours at a bowling alley, Ms. Lent, 47, relies on a caregiver who travels by school bus toting a homework-filled backpack: her 13-year-old daughter, Annmarie. Annmarie injects migraine medicine, dispenses pills, takes blood from her mother’s finger for tests and responds to seizures — responsibilities she has at times found overwhelming. At 11, she said, she felt “fed up,” thinking: “There’s no law says I have to take care of her. Why should I have to do it? Other kids, they could go out and play with friends.”

Across the country, children are providing care for sick parents or grandparents — lifting frail bodies off beds or toilets, managing medication, washing, feeding, dressing, talking with doctors. Schools, social service agencies and health providers are often unaware of those responsibilities because families members may be too embarrassed, or stoic. Some children develop maturity and self-esteem. But others grow anxious, depressed or angry, sacrifice social and extracurricular activities and miss — or quit — school.

“Our society thinks of children as being taken care of; it doesn’t think of children as taking care of anybody,” said Carol Levine, director of families and health care at United Hospital Fund, a health services organization that studied child caregivers. “Kids who do it well gain confidence,” Ms. Levine said, but “they may be resentful, not do as well in school and feel limited because their role is to be the caregiver.”

Health organizations are increasingly “realizing the extent of what children are doing,” said Nancy Law, an executive vice president of the National Multiple Sclerosis Society. “Everything from children who become overly responsible” to “the kid who totally rebels and gets into trouble.” “This is an issue that’s growing,” she said.

A 2005 nationwide study suggested that about 3 percent of households with children ages 8 to 18 included child caregivers. Experts say they expect the numbers to grow as chronically ill patients leave hospitals sooner and live longer, the recession compels patients to forgo paid help and veterans need home care.

Experts say that in the United States, the issue is often hidden. “It is embarrassing for grownups to admit they’re so helpless that a child is caring for them,” said Kim Shifren, a psychology professor at Towson University, who studies child caregivers and was one herself. Ms. Levine said children worried that “friends won’t understand and if some outsider sees they’re doing all this stuff there may be problems for the family.”

Programs for child caregivers face challenges because parents may fear that “you’re taking away their role as a parent” or that protective service agencies will be called, said Gail Hunt, president of the National Alliance for Caregiving. Ms. Levine said that rather than a response of “Oh, take the child out of the home,” a program’s priority should be “making the responsibilities appropriate.”

Many programs simply offer children a break from their responsibilities. The Caregiving Youth Project in Florida offers the most comprehensive approach, holding weekend camps to give children breaks and teach them caregiving skills. It counsels families and conducts classes and meetings in schools.

Experts say many child caregivers are from single-parent, low-income families, including some from foreign cultures accustomed to such roles. Others are from middle-income families whose insurance does not cover home care.

-Adapted from “ In Turnabout, Children Take Caregiver Role” By Pam Belluck, The New York Times, February 23, 2009 http://www.nytimes.com/2009/02/23/health/23care.html retrieved 2/24/09.

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