Youngest family caregivers: tweens and teens
By Carol Levin, Next avenue Donor
Part of growing up is learning to help others, starting with the family. For most children, that means doing ordinary household chores – walking the dog, helping with meals and cleaning, folding the laundry. That might mean showing Grandpa how to use his new computer or helping a younger sister with her homework.
But millions of children and teenagers also help a sick or disabled parent, grandparent or sibling with dressing, bathing and getting around. They administer medication, change dressings, operate equipment, act as interpreters in conversations with health care providers – all things that adult caregivers may find difficult.
These responsibilities can lead to useful skills, such as the ability to multi-task and express empathy. A young person’s caregiving experience can lead to a career in medicine or social work. However, being a caregiver also takes time for schoolwork, extracurricular activities and contact with friends.
If these young people do not receive appropriate support, they may be at high risk of physical and mental problems that may last into adulthood.
This is not a new phenomenon. It has always been part of living in multi-generational 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 that many children and adolescents play in their families, whether or not they live in the same household.
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 scarce and parents have lost their jobs.
Add caregiving to those worries, and many high-risk children face a perfect storm of stressors. At the same time, they lost crucial support. Teachers and counselors are often only available 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, Florida.
“Young caregivers 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 the AACY has shown, schools can play an important role in identifying and supporting carers for young people. But when schools partially or fully reopen, will the resources be available to ensure these vulnerable young people are not left behind? »
How many young carers are there?
There is no official estimate of the number of young caregivers in the United States, but new information suggests the group is large and growing. Caregiving in the United States 2020a national survey published by the National Alliance for Caregiving and AARP, found that 7% of adults who care for other adults said they were helped by someone under the age of 18.
With a total population of almost 48 million adult caregivers, this means that at least 3.4 million young caregivers and possibly as many as 5.4 million could help with tasks usually assumed to be a responsibility of adult.
This new survey was conducted before the Covid-19 epidemic, so it does not capture young people caring for parents or grandparents who are sick with coronavirus. And since adult respondents were the primary caregivers in the survey, children and adolescents without adult guidance at home were not included in the results.
Compare that to the only previous national survey —Young Caregivers in the United States: Findings from a National Survey — the 2005 report of the National Alliance for Caregiving and the United Hospital Fund. This report estimated that 1.3 million children were providing care, but acknowledged that the true number was undoubtedly higher.
Sanctioned by the Centers for Disease Control and Prevention Youth Risk Behavior Survey conducted in Florida in 2019 (the only state that included a question on caregiving) found that more than 290,000 middle and high school youth participated in some form of family caregiving.
Regarding the opioid epidemic, in 2017, an estimated 2.2 million children and adolescents were affected by illness, death or incarceration related to opioid use, according to a 2019 report from the United Hospital Fund.
An unknown number of these young people are also caregivers, responsible for siblings, calling 911 or administering Narcan when a family member overdoses, and taking over when that person relapses.
Young carers of people with ALS
As disheartening as these numbers are, they only show the scale of the problem, not the lived experience.
Recent research on children and adolescents helping someone with amyotrophic lateral sclerosis (ALS), a serious neurological disorder commonly known as Lou Gehrig’s disease, provides insight into the tasks undertaken by young caregivers.
A study in neurology led by Melinda S. Kavanaugh, professor of social work and researcher at the University of Wisconsin, Milwaukee, interviewed adult ALS caregivers who said a child also helps provide care.
The study of 100 families from 12 states identified 38 young people between the ages of 8 and 18 who reported spending 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 to and from a chair or bed. About 60% helped with the respiratory system, half helped the person take their medication, 60% looked after siblings and almost all did the housework or cooked meals.
When asked why they relied on young people for so much care, adults said it was mainly because they couldn’t afford the extra help. Both adults and children expressed mixed feelings.
In a typical response, an adult reported feeling “grateful and guilty.” According to Kavanaugh, “Children expressed the same kind of ambivalence. They said they needed more information about ALS; they wanted to connect with other young people their age to share their experiences and they found it difficult to explain their situation to friends, and they also reported feeling guilty when they did not provide care.
Nevertheless, 71% of children surveyed said that the care made them feel good about themselves.
What can family and friends do to help?
Both Siskowski and Kavanaugh emphasize the importance of honest communication between an adult and a young person about illness or disability. And adults need to be alert to signs that the child is having trouble keeping up with things in their life.
Some questions to consider:
- Has school work suffered?
- Have caregiving responsibilities increased recently?
- Has the young person developed any eating or sleeping problems?
- Are they afraid of making a mistake in caregiving?
Involving another adult in the family or a trusted teacher, coach, or religious leader can be helpful in setting boundaries. A social worker or community leader can help identify sources of additional home support and outside services such as adult child care centers that can reduce the responsibilities of adults and young people. Some disease-focused organizations also offer online materials for young people.
But lasting and effective solutions require more than any family or website can provide.
Government, education and social service agencies can support these young carers by reducing the stigma, which prevents many adults from seeking help; investing in family-centred services; ensure that government and private agencies work as a team and identify children at risk as early as possible.
Whatever programs are developed, young people themselves must be part of the planning process so that services respond to the real challenges they face. Their future depends on the help they receive now.