Caregiving youth: A hidden population

youngcaregiver
Young boy taking care of his grandmother.

While the typical preteen or adolescent can be found playing sports or video games after school, more than 1.3 million spend their free time caring for a family member who suffers from a physical or mental illness, or substance abuse.

These "caregiving youth" are a hidden population who are at risk of school failure and poor health themselves due to the chronic physical and emotional stress of their responsibilities at home, said Julia Belkowitz, MD, FAAP, author of an abstract titled "Caregiving Youth Project: A School-Based Intervention to Support a Hidden Population in Need." recently presented at the American Academy of Pediatrics (AAP) National Conference.

Belkowitz, assistant professor of pediatrics at the University Of Miami Miller School Of Medicine, and her colleagues worked with the American Association of Caregiving Youth (AACY) to better understand the experiences of these youngsters in Palm Beach County, Fla. They also studied the impact of services provided by AACY, including a support system, skills-building classes, home health and community resources, tutoring and respite services along with sponsored fun activities.

Researchers analyzed approximately 550 intake forms completed by the AACY. The forms included information on demographics, caregiving activities and health status.  They also reviewed 200 family intake forms completed when a social worker conducted a home visit with the families as well as feedback forms completed annually by youth participating in AACY activities. They found that:

  • 62% of the youth caregivers were girls; 38% were boys
  • The median age of caregivers was 12 years
  • They spent approximately 1.5 hours on weekdays and 2.25 hours on weekend days performing caregiving tasks at home

"This study is an important step toward raising awareness about this issue," said Belkowitz. "The AACY is developing partnerships throughout the nation to further understand this special population and expand programming to provide the resources and support these young people need and deserve."

"AACY services in Palm Beach County reach only the tip of the iceberg," said Connie Siskowski, RN, PhD, founder and president of AACY. "Today in the U.S., there are many more than the 1.3 million children identified in 2005 who face the challenges of juggling adult-sized responsibilities of caring for ill, injured, aging or disabled family members while trying to keep up at school."

When classmates are at basketball practice, play rehearsal, working on school projects, or just hanging out with friends they are providing:

  • Medical care
  • Personal care
  • Supervision
  • Emotional support and
  • Language translation in medical settings 

Many times these youngsters are also responsible for the typical everyday responsibilities of running a household including:

  • Food shopping and meal preparation
  • Laundry
  • Cleaning

These grown-up burdens on such young shoulders can have profound effects on the caregiver such as:

Physical

  • Compromised normal growth and development
  • Neglecting  personal medical needs, missing their own medical appointments, and not receiving necessary immunizations

Psychological

  • Anxiety
  • Isolation
  • Depression

Academic

  • Often unable to complete assignments or participate in co-curricular activities
  • Excessive absences

Siskowski knows from personal experience just how much such adult burdens can impact the lives of young caregivers. As a teen, she was responsible for her grandfather’s care and was the one who found him dead when she entered his room to tend to him. 

And, she also knows that child caregiving can be beneficial:

Rewards

  • Developing a special relationship with the care recipient
  • Leaning valuable life skills
  • Gaining a sense of purpose
  • Enhancing self-esteem when recognized for contributions
  • Increased empathy

Because of drastic cuts in government funding and the resulting loss of many non-profits that provide most of the services and support systems necessary for the chronically ill, mentally ill, and those battling substance issues the number of child caregivers will continue to grow.

That won’t happen as long as Siskowski and the AACY keep fighting to make sure this “hidden” problem can no longer be ignored. 

For more information about the American Association of Caregiving Youth, the national resource for the support of children who are caring for ill, injured, elderly, or disabled family members, go to http://www.aacy.org/ or call 800-725-2512


 

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