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This article is reprinted by permission from NextAvenue.org.
Part of growing up is learning how to help others, starting with the family. For most kids, that means doing ordinary household chores — walking the dog, helping with meals and cleanup, folding the laundry. It might mean showing Grandpa how to use his new computer or helping a younger sister with homework.
But millions of children and adolescents also help an ill or disabled parent, grandparent or sibling with dressing, bathing and mobility. They give medications, change bandages, operate equipment, act as interpreters in conversations with health care providers — all the things adult caregivers can find challenging.
These responsibilities can lead to useful skills, such as the ability to manage multiple tasks and express empathy. A young person’s caregiving experience may lead to a career in medicine or social service. However, being a caregiver also takes time from schoolwork, after-school activities and keeping up with friends.
If these youngsters are not given appropriate support, they can be at high risk for physical and mental problems that can last well into adulthood.
This is not a new phenomenon. It has always been part of living in multigenerational families, now the norm for a record 64 million Americans. The convergence of the COVID-19 pandemic and the opioid epidemic presents an unfortunate but timely opportunity to pay belated attention to the caregiving roles many children and adolescents play in their families, whether they live in the same household or not.
A perfect storm of stressors
When the COVID-19 pandemic closed schools, children had to stay at home, where the most vulnerable live in crowded conditions that make social distancing impossible. For some, food is in short supply, and parents have lost jobs.
Add caregiving to these worries, and many high-risk children face a perfect storm of stressors. At the same time, they have lost crucial supports. Teachers and counselors are frequently available only virtually, and many youth programs have closed or lost contact with the children they served. One program works with public middle and high schools in Palm Beach Country, Fla.
Related: This overworked group is burning out from COVID-19: Family caregivers
“Caregiving youth have yet to be fully recognized by professionals or the public,” says Connie Siskowski, a nurse, researcher and social entrepreneur who founded the American Association of Caregiving Youth (AACY). “As AACY has shown, schools can play an important role in identifying and supporting youth caregivers. But when schools are reopened partially or fully, will the resources be available to make sure these vulnerable youth are not left behind?”
How many young caregivers are there?
There is no official estimate of the numbers of young caregivers in the U.S., but new information suggests that the group is large and growing. Caregiving in the U.S. 2020, a national survey published by the National Alliance for Caregiving and AARP, found that 7% of the adults who care for other adults reported that they are helped by a youngster under the age of 18.
With a total population of nearly 48 million adult caregivers, this means that at least 3.4 million youth caregivers and possibly as many as 5.4 million may be helping to perform tasks usually assumed to be an adult responsibility.
This new survey was fielded before the COVID-19 epidemic, so it does not capture the young people caring for parents or grandparents sickened by coronavirus. And since adult respondents were the primary caregivers in the survey, children and teens without adult guidance in the home were not included in the findings.
Compare this to the only previous national survey —Young Caregivers in the U.S: Findings from a National Survey — the 2005 report from the National Alliance for Caregiving and the United Hospital Fund. That report estimated that 1.3 million children were providing care, but recognized that the actual number was undoubtedly higher.
The Centers for Disease Control and Prevention-sanctioned Youth Risk Behavior Survey conducted in Florida in 2019 (the only state that included a question about caregiving) found that more than 290,000 middle- and high-school youth participated in some form of family caregiving.
Also see: More than 74,000 kids tested positive for the coronavirus in early August
Turning to the opioid epidemic, as of 2017, an estimated 2.2 million children and teens were affected by illness, death or incarceration related to opioid use, according to a 2019 United Hospital Fund report.
An unknown number of these youngsters are also caregivers, responsible for siblings, calling 911 or administering Narcan when a family member overdoses, and taking over when that person relapses.
Young caregivers of people with ALS
As daunting as these numbers are, they only show the breadth of the issue, not the lived experience.
Recent research on children and adolescents who provide help to a person with Amyotrophic Lateral Sclerosis (ALS), a severe neurological disorder commonly known as Lou Gehrig’s disease, provides insights into the tasks that young caregivers take on.
A study in Neurology led by Melinda S. Kavanaugh, a social work professor and researcher at the University of Wisconsin, Milwaukee, surveyed adult ALS caregivers who said a child also helped provide care.
The study of 100 families from 12 states identified 38 youngsters aged 8 to 18 who said they spent an average of five hours a day providing care. They perform an average of 12 tasks, including feeding, showering/bathing and transferring their parent or other relative from and to chair or bed. Some 60% helped with respiratory equipment, half helped the person take medication, 60% took care of siblings and nearly all did housework or cooked meals.
When asked why they relied on youth for so much care, the adults said it was primarily because they could not afford additional help. Both the adults and children expressed mixed feelings.
In a typical response, one adult reported feeling “grateful and guilty.” According to Kavanaugh, “The kids expressed the same kind of ambivalence. They said they needed more information about ALS; they wanted to connect with other youths their age to share experiences and they found it difficult to explain their situation to friends.” They also reported feeling guilty when they were not providing care.
Nevertheless, 71% of the children interviewed said that providing care made them feel good about themselves.
What can family and friends do to help?
Both Siskowski and Kavanaugh stress the importance of honest communication between an adult and a youngster about the disease or disability. And adults should be alert to signs that the child is having difficulty keeping up with things in their life.
Some questions to consider:
- Has schoolwork suffered?
- Have caregiving responsibilities increased recently?
- Has the youth developed eating or sleeping problems?
- Are they fearful of making a mistake in caregiving?
Involving another adult in the family or a trusted teacher, coach or religious leader may be helpful in setting boundaries. A social worker or community leader can help identify sources of additional in-home support and outside services such as adult day care that may lessen the responsibilities for the adults and the youth. Some disease-focused organizations have online materials for young people, too.
But lasting and effective solutions require more than any family or website can provide.
Government, education and social service agencies can support these young caregivers by reducing stigma, which prevents many adults from seeking help; investing in family-centered services; ensuring that government and private agencies work as a team and identifying children at risk as early as possible.
Whatever programs are developed, young people themselves must be part of the planning process so the services address the real challenges they face. Their futures depend on the help they receive now.
Carol Levine is a Senior Fellow at United Hospital Fund in New York and former director of UHF’s Families and Health Care Project. She was awarded a MacArthur Fellowship for her work in AIDS policy and ethics.
This article is reprinted by permission from NextAvenue.org, © 2020 Twin Cities Public Television, Inc. All rights reserved.
