By Hannah Lee, Staff
According to the National Family Caregivers Association, more than
50 million adults each year provide some sort of care for an ailing
family member or friend. Of these people who care for another
person, how many have children? Do these children assist in the
caregiving process? What effect do the responsibilities and demands
of caregiving have on the child participating in the care?
Much research has been done on the potential negative outcomes for
adult caregivers who often don’t take care of themselves and suffer
from such things as high levels of stress, financial problems and
even early death. However, few seem to be asking about the children
who also live in these situations and often assist in the caregiving
responsibilities. Therefore, one organization aims to help the
children who find themselves in a caregiving role. But first, they
must answer some questions.
According to American Association of Caregiving Youth (AACY),
caregiving youth are “children and adolescents who are 18 years of
age or younger and who provide significant or substantial
assistance, often on a regular basis, to relatives or household
members who need help because of physical or mental illness,
disability, frailty associated with aging, substance misuse, or
other condition.” Most often teenagers, caregiving youth contribute
to a wide variety of activities of daily living, anything from
feeding to dressing the ailing person. All the while, these
children must balance the dual role of student and caregiver.
As the first organization of its kind in the United States, AACY
found itself in uncharted territory with little research being done
on the issue of children as caregivers. Previous research on the
subject of these young caregivers was conducted primarily in England
and Australia. In fact, it was her attendance of the first annual
conference of Young Carers, as they are called in England, that led
Dr. Connie Siskowski, now Director of the first U.S. Caregiving
Youth Project (CYP) and AACY, to truly pursue an American-based
organization to discover what children in this country endure. “We
have a billion questions. We have to know the population before we
can even think about measures to help,” explains Laurie Conners,
Project Manager for the CYP and its pilot project. So what does
AACY do? They go to the source.
In 2002, Connie Siskowski persevered for the opportunity to place
two questions on a survey of kids in grades 6-12 in Palm Beach
County Schools conducted by Palm Beach Atlantic University and the
School District of Palm Beach County. The questions asked about the
participation of caregiving to a person with special medical needs
at home and whether or not the student believed that role affects
their academic performance. The result of those two questions was
overwhelming. Of the over 11,000 students who participated in the
study, 60.9 percent stated there was someone with medical needs
living with them or close by, and 92.5 percent of those with family
health situations said they participate in the care of that person.
Moreover, of the students who had a family health situation, 38.5
percent believe that family situation hinders their learning.
Another study was just concluded at Boca Raton Middle School where
nearly 900 kids completed a survey to further examine the effects of
caregiving. More studies are planned for other schools in South
Florida. All of this groundbreaking research is helping the
organization best serve kids who must juggle school work and
caregiving. “We want to reduce the barriers to learning so a
student doesn’t come to school unable to concentrate because they
are worried about the responsibilities they left at home,” says
Within Boca Raton Middle School, the CYP team is building a model of
support services along with a school wide health education program
which is being developed to educate the students and faculty on the
issues of caregiving youth. The CYP is also working to establish
caregiver specific counseling and support groups within the school.
While research has been the primary focus of the organization,
education within the medical and educational communities is
essential for getting caregiving youth the support they need. “We
need to educate professionals first,” says Conners. “Where there is
a patient who is no longer independent, there is a caregiver. And
where there is a caregiver, there are often children involved.”
For the most part, health care professionals don’t ask if children
are involved in households with a chronically or critically ill
person. AACY has made it part of their mission to educate health
care workers about the issues of caregiving youth so that these
professionals, in turn, can educate the families. The organization
is also working directly with different disease organizations to
educate them on the needs of children. In fact, the National
Multiple Sclerosis Society has a section for children whose parents
Last spring AACY, through the George Snow Scholarship Fund, awarded
three scholarships to kids in Palm Beach County who were not only
exemplary students, but also care for a disabled family member.
Originally only one scholarship was slated to be awarded. However,
after hearing the remarkable stories, AACY went out to solicit two
more scholarships. “Each story was more compelling than the last.
We knew each of the nominees deserved to win,” explains Siskowski.
Although still a work in progress, the AACY website aims to be a
virtual support group and informational portal to bring this issue
into the forefront. Already with separate sections for pre-teens,
teens, families and professionals, the organization offers their
gamut of knowledge for the kids going through a caregiving situation
and for professionals who may come across these kids. On the
website, you can learn more about the research they have conducted,
read stories from kids who care for a loved one and discover ways to
cope with the stress young caregivers often face.
After more than 18 months of volunteer work, two local South Florida
foundations joined together last June to donate funds to establish
the Caregiving Youth Pilot Project and thus further AACY’s cause.
As they continue their research and program development within Palm
Beach County, they eventually hope to soon offer their services