When Children Become Caregivers

Article Summary
  • The Miller School’s Julia Belkowitz, M.D., M.P.H., co-authored a white paper analyzing children serving as caregivers in their homes.
  • Dr. Belkowitz believes the current estimate of 5.4 million child caregivers is dramatically low because the number excludes children who are the sole caregivers.
  • Children responsible for caregiving are at risk for stress, anxiety, depression and fatigue, and tend to underperform in school.

A new white paper, “Report on Caregiving Youth in the U.S.,” dives into a mostly invisible problem: children caring for sick and/or disabled family members. Published by the Caregiving Youth Research Collaborative (CYRC) and supported by University of Miami Miller School of Medicine research, the report shows that millions of children in the U.S. must take on adult responsibilities, with little or no support.

Julia Belkowitz, M.D., M.P.H., associate dean for student affairs, associate professor of pediatrics at the Miller School
Julia Belkowitz, M.D., M.P.H., says that children who bear caregiving responsibilities are subject to fatigue, stress, anxiety and depression.

“Most pediatricians have never even heard the term caregiving youth,” said Julia Belkowitz, M.D., M.P.H., associate dean for student affairs, associate professor of professional practice in pediatrics and co-author on the white paper. “The NIH acknowledge the tremendous toll that caregiving can cause, and the CDC even describes caregiving as a public health issue, but neither group recognizes that children play a key role.”

How Many Kids are Caregivers?

The white paper is part of ongoing efforts to highlight this issue and spark rigorous research and public policy solutions. The first challenge is quantifying the problem. The paper cites 5.4 million caregiving youth in the U.S., but acknowledges the figure is almost certainly an undercount.

“Every few years, the National Alliance for Caregiving and AARP put out a report,” said Dr. Belkowitz. “In the latest one, they asked whether children were participating in providing care and living in homes with adult caregivers. That’s how they arrived at 5.4 million. That does not include kids who are sole caregivers, so we believe this is a major underestimate.”

These children are caring for family members with chronic diseases, mental health conditions, age-related decline and other issues. They are managing medications, troubleshooting devices, assisting with bathing and toileting, physically transferring adults and performing other care-related tasks.

The consequences can be devastating: stress, anxiety, depression, fatigue, physical strain and other concerns, including their education.

“You can imagine these kids are tired when they go to school and that reflects in their grades,” said Dr. Belkowitz. “And if their teachers don’t know what’s happening, they’re going to be in trouble for missing homework, sleeping in class, being absent and generally underperforming.”

Input from a Medical Expert

As the only physician author, Dr. Belkowitz brought more than a decade of research and experience to the paper. Working with colleagues and medical students at the Miller School of Medicine, she has led multiple studies to better understand the issue.

Young boy washing dishes in the kitchen
Kids are doing more than washing dishes. A good number are responsible for managing the medication for the adults in the house.

“About a third of the kids we’ve studied are managing medication, which is a tremendous responsibility,” said Dr. Belkowitz. “They often escort their parent or grandparent to the doctor, translate, and the feedback we get is that, while the doctor is talking about the older family member, they are often looking directly at the kid. They know who is giving the insulin shot, counting out the pills or attaching the device.”

This silent understanding does not generally translate into support, something Dr. Belkowitz would like to change. Unlike the United Kingdom, Australia and other nations, the U.S. has no national or state systems to help these children cope with their duties.

The research is ongoing. Recently, a Miller School medical student added caregiving questions to a mental health survey offered in a University of Miami school-based health clinic. Not surprisingly, the kids who identified as caregivers were at higher risk for emotional issues.

Incorporating caregiving youth information into medical education is a key part of the solution, as it will give physicians better tools to help these kids. Asking the right question during a medical intake can identify child caregivers and potentially get them help.

With more information, Dr. Belkowitz hopes U.S. public policy will catch up to the problem.

“We need to figure out who these children are, on a national scale, and provide both legal recognition and support,” said Dr. Belkowitz. “These kids exist, they have a lot of needs and it’s our obligation as a society and as healthcare providers to be there for them.”

Tags: child wellbeing, Department of Pediatrics, Dr. Julie Belkowitz