Children's Voice May/June 2006

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Turning the Tables: Children Caring for Family

Child caregivers have gone largely unnoticed in the United States.

By Deborah J. Amend

When Maggie Ornstein began high school, she was a typical teenager. An honor student at a small parochial school, she enjoyed school, extracurricular activities, spending time with her friends, and planning for college.

At 17, though, Ornstein's life took a dramatic turn when her mother was struck with a brain aneurysm that nearly took her life. Ornstein's mother spent the next three months in a coma, and many subsequent years in hospitals. Living with only her mother and an elderly grandmother, Ornstein became the primary caregiver for the family.

"I went from planning my prom and college, to planning my mother's care," recalls Ornstein, now 28. "We had moved in with my grandmother to help her after the death of my grandfather. All of a sudden, the role of running the home and caring for both my mother and grandmother fell to me."


Ornstein's story is not unique. In fact, millions of children nationwide are providing daily care to family members, and they have gone largely unnoticed. Caregiving professionals in the United States have only recently started meeting with their counterparts in other countries to look at the issue, and they've learned that services abroad have long focused on child caregivers.

The U.S. Administration on Aging recently funded the first study to bring attention to these children in the United States. The National Alliance for Caregiving, in collaboration with the United Hospital Fund, conducted the study. The Report on a National Survey of Young Caregivers in the U.S. outlines the study's three objectives: to determine the prevalence of caregiving among children in the United States, to learn what role children play in caregiving, and to learn how the caregiving role impacts the life of a child.

More than Household Chores

The study identified a statistic that should serve as a wakeup call--as many as 1.4 million children in the United States, ages 8-18, are caregivers. Although a small percentage care for a sibling, some 72% serve as the main caregiver for either a parent or grandparent.

Child caregiving can result from many different circumstances. Sometimes, in the case of certain diseases and medical conditions, supports exist for the children. Many children, however, don't have access to an organized support network. And some diseases, such as alcoholism and mental illness, carry a stigma that causes many families to hide their problems from the very people who can help them. Families dealing with these illnesses aren't often willing to talk about them--including talking to researchers. The authors of the National Survey of Young Caregivers note their study should be thought of as, "a survey that is representative of households that include child caregivers [who] are willing to discuss their situation."

Study coauthor Carol Levine, CEO and President of the Families and Health Care Project, United Hospital Fund, says, "[In these stigmatized illnesses] there is often so much more loss than just the need for caregiving--death, drug use, abandonment, etc. These are the children in danger, and these are the ones that, unfortunately, this study most likely did not reach."

As with any study, Young Caregivers answers some questions and raises still more. It's a starting point, though, for the work that needs to be done for young caregivers.

"To me, the crux of the issue is that there are well over a million of these caregiving children, and almost no one...[knows they] exist or how their role affects them," says the study's principal researcher, Linda Naiditch.

What the research shows is disturbing. Children are being called upon to perform tasks that are much greater than typical daily chores. "Over half of the child caregivers," according to the study, "help their care recipient with at least one activity of daily living (ADL), such as bathing, dressing, getting in and out of beds and chairs, toileting, and feeding." The children also help with shopping, household chores, meal preparation, medications, transportation, and communication with doctors and nurses. In the case of immigrant families, the child will often act as a translator during medical visits.

"In some cases, when acting as a translator, children become almost a patient advocate for their parent," says study coauthor Gail Hunt, Executive Director of the National Alliance for Caregiving.

Caregiving and Its Effects on Childhood

What are the results of caregiving at such a young age? It depends on the child and his particular situation. Some children are able to handle the pressures of caregiving and continue to build a future. Ornstein, for example, finished high school and continued through college and then graduate school. Now working on a second master's degree, in public health, Ornstein discovered school was her outlet for the pressures of caregiving.

Other children don't always fare so well. Young caregivers are more likely than their noncaregiving peers to have difficulties in school, both with teachers and with other students. While the Young Caregivers study indicates they spend the same amount of time on homework and leisure activities as their noncaregiving counterparts, anecdotal evidence provided by young caregivers suggests they find themselves crunched for time to complete their work and participate in outside activities. Some said their caregiving responsibilities affected their academic and social lives.

According to reports from parents about their children's behavior, caregivers are more apt to show anxiety or depression than are noncaregivers. "I could never cut loose," Ornstein recalls. "I always had a vision of my mother in the hospital bed, and I worried about what would happen if I wasn't with her. There was always that thought that nobody could take care of her like I could...it carries a lot of guilt."

"What makes one child resilient and another child not?" Levine wonders. "One hypothesis...is the quality of the relationships with the care recipient."

Hunt adds, "There are a number of factors...one of which is whom the child is caring for. For instance, caring for a grandparent may have a less negative impact on a child than caring for a parent."

Although the study didn't address it, many caregiving professionals and former youth caregivers agree certain influences can help a child. Access to resources and a strong support network, including family, friends, church, and community, may play into how the child reacts to her new role. Another influence can be the amount of responsibility placed on the child, and if she feels ready to handle what's required of her.

And, of course, the nature of the illness or disability can also shape the situation, including whether the parent is terminally ill, or whether the parent is struggling with mental illness, alcoholism, or another condition about which a child would be afraid to confide in another adult.

Reaching Out

Since the 1990s, professionals in the United Kingdom have been providing services for young carers, as they refer to them. The Princess Royal Trust for Carers, for example, has been working with young caregivers by offering an array of services through its website, www.youngcarers.net.

Services include chat rooms and online youth workers who can provide an outlet for children to talk through their frustrations and problems. The website also explains their rights under British law, describes the roles of various professionals, and outlines other services available to them. Designed with children in mind, the site is visually appealing and easy to navigate.

The site also serves as a link to the Young Carers Project--a national organization with many local affiliates--and offers a database of contacts and information about training events and conferences; Young Carers festivals; publications, including a guide entitled Making it Work: Good Practice with Young Carers and their Families; and other resources.

The Young Carers festivals provide a time of respite, education, and recreation for child caregivers. Advocacy for new laws and regulations for carers and their families, and practical advice on school, money, and planning for college, round out their support.

In the United States, the National Multiple Sclerosis Society has for a long time made family advocacy and education a priority. Keep S'myelin, an online interactive newsletter also available in print, is perhaps its most popular outreach. The organization has also published Journey Club, a workbook used with a six-week workshop for parents and children, and a cartoon entitled Timmy's Journey.

Nancy Law, Vice President of Client Programs for the National MS Society, points out that when a family has the support they need, caregiving for an ill parent is not necessarily a negative experience. The society, therefore, reaches out to families through its local chapters by providing family meetings, family days at local places of interest, and even financial help for families in need. An annual scholarship competition rewards the children of MS patients who have excelled academically while caring for an ill parent.

Dustin Sordelett, a college freshman at Virginia Tech, is an example of a young caregiver who has benefited from the National MS Society's support. His father has struggled with progressive MS for years, and Sordelett has actively participated in his care. During all the years he helped his mother care for his father and run their home--including chopping the wood used to heat it--Sordelett participated in high school athletics, played in a band, sang in a choir, and graduated from high school with a 4.0 grade point average. Yet, Sordelett took the time, daily, to enjoy his father's company, talking about sports and reminiscing about his father's high school days.

Spreading Support Nationally

Organizations created around specific illnesses, such as multiple sclerosis, offer support to child and youth caregivers, but no national organization exists for all caregivers. "I wish I could offer advice about where to send these children," Hunt says, "but the fact is, there is no place or agency to send them to for help...no print material...nothing."

So, where should one start?

Reflecting on what has worked in the U.K., Hunt believes school systems are one place to begin. Teachers, social workers, guidance counselors, and school nurses who are attuned to these kinds of issues can identify children who need support services. In the classroom, teachers should be able to identify a student who has suffered a dramatic change in his life. A student who has been punctual and attentive normally may start arriving late to class or appear extremely drowsy.

If a teacher or other child care professional suspects a student might be caring for a parent, the key is to question the student gently. "If a child is having trouble in school, try to ask if there's someone at home who is not well," Levine says. "Identify [the problem], don't be threatening or critical. Ask, 'Is there something I can do to help you?'"

Hospital discharge planners and health care system professionals can also identify young caregivers. Although many recipients of care do not go through the hospital system, most do. "If you're a nurse and you're sending a patient home to be cared for by a 12-year-old child, this should be raising red flags," Hunt says.

"Chronic illness is a family disease," Law notes, and increasing the care provided to the parent will help relieve the burden on the child. Some families have also found benefits to professional home health care. "There are some resources out there. Families just need to know what's available and how to access those services. A case worker who can do a home visit and assessment for the family would be a tremendous help."

As the National MS Society has seen, parents are the key to helping the children, which is why Keep S'myelin has proved successful. The publication is for children but is designed to help parent and child communicate about the parent's disease.

The National Alliance for Caregiving is coordinating a coalition of groups--including the National MS Society, the National Parkinson Foundation, the Alzheimer's Association and others--to work together to obtain funding to develop programs. Other organizations are invited to participate in the coalition.

"The impetus [for this advocacy] can only partially come from the caregiving world," Levine says. "Other advocates must step forward. The caregiving community has traditionally dealt with the needs of older people and is not in touch with the child's needs, especially in terms of developmental abilities and how that relates to the child's needs."

Based on her experiences, Ornstein dreams of a support network that would help the children who follow in her footsteps: "A database that any child or young adult caregiver could call or e-mail [to] locate other caregivers near them. [The organizing agency] could also offer recreational activities [and] services for the person being cared for in order to...provide respite to the young caregiver."

In his scholarship-winning essay, Dustin Sordelett, wrote about what can happen when young caregivers receive the support and encouragement they need to walk the path that illness has laid in front of them:
One impact my father's MS has had on me is to realize that today is promised to no one...My father's illness has also made me realize that I can't have everything so many of my friends have...But my life is full of so much more than things...I have learned that things do not make one happy--happiness comes from being loved and grateful for what one has. And I am both loved and grateful.
Deborah J. Amend is a freelance writer in Cincinnati, Ohio.

Resources

  • Lotsa Helping Hands
    This website allows family and friends to create simple, private calendars to organize care for a chronically ill person. Simple templates allow a care coordinator to list the needs of the ill individual. Family and friends who have been granted access to the calendar can sign up to help.

  • National Alliance for Caregiving
    A full copy of the Report on a National Survey of Young Caregivers in the U.S. is available, as well as general tips on caregiving, although the focus is on adult caregivers. For information on the alliance's efforts to form a coalition or organizations to develop programs for caregivers, e-mail info@caregiving.org.

  • Rosalyn Carter Institute Caregivers Program
    The site contains links to caregiving services and resources around the world.

  • United Hospital Fund
    Contains a full copy of the Report on a National Survey of Young Caregivers in the U.S.

  • YCNet
    Funded by the Princess Royal Trust for Carers, the website contains a wealth of information about what the United Kingdom is doing for its child caregivers.



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