When you think of someone caring for a sick or disabled relative, you probably don't imagine a 12-year-old child. But new research shows that at least 1.3 million kids in the United States are caregivers for someone they love.
Youth caregivers are “a hidden population who are at risk of school failure and poor health due to the chronic physical and emotional stress of their responsibilities at home,” said Dr. Julia Belkowitz, an assistant professor of pediatrics at the University of Miami's Miller School of Medicine.
Belkowitz is one of the authors of a new study on youth caregiving that will be presented at the American Academy of Pediatrics (AAP) national conference in San Diego.
Kids Give Daily Care and Emotional Support
Belkowitz and her colleagues conducted the study with the American Association of Caregiving Youth (AACY), a Palm Beach County, Florida organization that works with the county school system to offer support and resources to youth caregivers beginning in sixth grade.
The researchers analyzed data from 550 AACY youth caregivers at eight middle schools in Palm Beach County. Youth caregivers reported helping family members with getting around, eating, dressing, bathing, and using the toilet.
The children also reported keeping their family members company, providing emotional support, cleaning the house, shopping for groceries, giving medications, translating in medical settings, and handling medical equipment at home.
Belkowitz told Healthline that 44 percent of young caregivers mentioned they are helping family members who have mobility problems. “This could be stressful for young kids," said Belkowitz.
Caregivers Devote More Than Two Hours a Day
The data showed that 62 percent of the young caregivers were girls and 38 percent were boys. The median age of the caregivers was 12 years old.
Youth caregivers reported spending about 2.5 hours each school day and four hours each weekend day performing caregiving tasks at home.
The family members' estimates were slightly lower, at 1.5 hours on weekdays and 2.25 hours on weekend days.
Connie Siskowski, RN, Ph.D., the founder and president of AACY, told Healthline, “It is time, past time actually, that this hidden population is no longer behind closed doors and silently enduring the challenges of caregiving. With the eight years of developing a solid program of support in school, out of school, and at home, lives are transformed."
A Young Caregiver Tells Her Story
Isis Michalski, 15, a student at G-Star School of the Arts in West Palm Beach, is a participant in the AACY program. She was only 8 years old when she learned her mom, whose name is also Isis, had breast cancer.
“My mom has had cancer three times. The first time I was too young and it didn't really affect me. But the second time it was the ‘big effect’ because we moved up north to an area with a better clinic. I was really devastated at first to be moving away from from friends," said Michalski.
Isis Michalski, 15, second from the left, poses with her family. Photo courtesy of Isis.
Michalski, whose family moved in with her aunt, said, "From there my whole life changed, and I was helping my mom through that. When she had chemotherapy, I would make sure she had her next medicine ready, and help her with her meals because she couldn’t eat normally. I would also just be with her for moral support and company. Some nights she’d be throwing up, and I’d stay with her. I also helped take care of my younger sister, who was in preschool.”
At the end of sixth grade, representatives from the AACY came to Michalski’s school. She signed up and attended group meetings and field trips. "It helped me tremendously. It didn’t make me feel as isolated from 'normal' kids who didn't have to help, or watch their patents or a loved one go through any sickness or disability," she said. "There were so many cool friends I never would have known who were going through the same things."
One of the most helpful monthly sessions was stress management. Michalski said, "We talked about if we get stressed, and the ways it affects you at school, and in life in general and ways to manage and to cope with stress."
Remembering Camp Treasure
Michalski’s favorite part of the program was attending Camp Treasure, a weekend sleep-away camp. "It was a week of fun. We learned at the end why it’s called Camp Treasure: that we are the real hidden treasure because of what we do with our lives. I don’t know what it was, but that weekend, that message, that trip made me feel really important, that I’m like a treasure — I’m valuable.”
Michalski says young caregivers should participate in activities they love to do, even if it means not doing them on a daily basis. “I love running, theater, and dance. Sometimes I may have to do it a little less, maybe every other day or so," she said.
Michalski advised other young caregivers, “As much as they feel alone or isolated or like the world is ending, because it does very much feel like that, they are not alone. They do have support.”
Thankfully, Michalski's mom is now in remission. “Me and my younger sister try even now to do as much chores as possible," she said. "I say, 'Clean house, happy mom.'”