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Unsung Young Heros: How Millions Of Youth Caretakers Serve Ill Or Disabled Family Members

Help and support Concept : Woman holds her young kids hands on brown wooden table background. Free space for text or design
Piyawat Nandeenoparit
Despite limited data, it's estimated that there are more than three million people under the age of 18 who help care for an ill or disabled family member in the United States.

When you think of a caregiver, you typically picture an adult — but the spectrum of caregivers includes youth. It’s estimated more than three million children and teens in the U.S. help care for an ill or disabled family member.

It’s most likely that this number has only grown, but data is limited by the stigma families feel and the fear they face around disclosing a child caregiver. Most young caregivers get no formal training, and care programs and services at the state and national level don’t begin until the age of 18 — making resources even scarcer.

Melinda Kavanaugh earned her Ph.D. in social welfare at UW-Madison and is an associate professor of social work at UW-Milwaukee. She studies the role children and youth play as caregivers and how to best support them.

“The children and youth that I do a lot of research and programming with are truly doing the full constellation of care tasks,” says Kavanaugh.

Bathing, feeding, dressing and other daily living functions are all assignments that a young caretaker might have to do for a parent or other family member, on top of any illness-specific task.

But without formal training, kids are forced to do this work by improvising what they think is best and asking the adult what kinds of care they need, Kavanaugh explains.

“Upwards of 70% of the youth across my studies have received no training or guidance, and when asked ‘What do you do to gain this information or skill?’ They give you some very brutally honest answers — they wing it," she says.

Through Kavanaugh’s research of Alzheimer's and caregiving, she has found that Black and Latino families have higher rates of youth caretakers in Milwaukee than white families. These populations are also more likely to face poverty, lack access to health care and have been harder hit by the COVID-19 pandemic.

Courtesy of YCare
Youth caretakers at a YCare training on properly using medical equipment in their homes.

“There are enormous institutional barriers against these populations, and so when it comes to caregiving you do see a disproportionate burden because of those levels of discrimination and lack of access,” she says.

This isn't an issue just in Milwaukee, either. The Caregiving in the U.S. 2020 survey published by the National Alliance for Caregiving and AARP found that Hispanic and African American children are twice as likely to be youth caregivers as non-Hispanic white children.

When Kavanaugh asks young people what support they want, they often talk about needing supportive friends who can understand what they are going through and not judge them for having to take care of a family member. They also ask for adults who can teach them more about their family member’s illness and ways to take care of them, and they want to be able to take breaks and enjoy their own life.

Courtesy of YCare
Health care professionals give the young caretakers training and advice at day long YCare events.

“They really want to know more about whatever the illness is, and it can be incredibly difficult particularly for parents to open up and talk about that illness because often they haven’t come to terms with it themselves,” she says.

The COVID-19 pandemic has stripped support away from these kids and further isolated them, Kavanuagh says. Not being able to leave their house means these youth caretakers are constantly in an environment where they have to be helping with these very adult tasks.

But Kavanaugh has worked to try and provide these kids with that information and skills to help take better care of their family members. She helped create YCare, a day-long program that connects youth caretakers with health care professionals who deliver proper training on the equipment and techniques they can use in their own homes.

Kavanaugh says gaining the trust of these young people is just about showing them that she is willing to continue to show up and help them. “It’s really about engaging in communities and being present, and going to all the meetings and being there and showing up every time,” she says.

Audrey is a WUWM host and producer for Lake Effect.
From 2020 to 2021, Jack was WUWM's digital intern and then digital producer.
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