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MAGAZINE / Nov-Dec 2006 / A Place for Kids...

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A Place for Kids
American Association of Caregiving Youth

By Hannah Lee, Staff Writer

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 Conners. 

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 have MS.

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 nationwide.


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