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Advice on How to Help Children Overcome the Stigma of Having Epilepsy

ARTICLE IN BRIEF

  • ✓ A nurse who oversees an epilepsy education program offers advice on how to help children deal with their negative feelings about epilepsy based on studies in this area.

SAN DIEGO—For children with epilepsy, the stigma of having epilepsy is often rooted in their own fears and views of their condition, according to experts who presented findings here in December at the annual meeting of the American Epilepsy Society.

Helping children overcome that stigma can be challenging for their neurologists, said Joan K. Austin, DNS, RN, distinguished professor and Sally Reahard chair of the Indiana University School of Nursing in Indianapolis, IN. Dr. Austin and colleagues at Indiana University developed a program called “Be Seizure Smart” at the university to educate patients and their families about seizure disorders and help them understand that epilepsy is a manageable condition. She proffered advice on how to help children deal with their negative feelings about epilepsy based on studies in this area.

INTERNALIZED STIGMA

To start, neurologists should provide young patients with a more realistic view of the condition, and let them know that “everyone feels different about something about themselves.” This perspective, she said, can do much to normalize those feelings for these children.

“The internalized stigma is at least as great a burden as the social and institutionalized stigmas [typically reflected in cumbersome insurance policies] that confront children with epilepsy,” said Dr. Austin, in a phone interview after the meeting. Some reassuring words from their own physicians can do much to undo that damage, she said.

CORRECT INACCURATE INFORMATION

Sometimes children's fears and concerns are based on inaccurate information about epilepsy, she noted. “One way the neurologist can help the child is to address the issues they're worried about directly.”

For example, children with epilepsy are often worried that the condition is fatal, or that they will lose sanity or intelligence. Dr. Austin cited the example of a girl with epilepsy who assumed that she would become mentally retarded because she saw children like that in the neurologist's waiting room.

Two important messages physicians need to convey to children is that they did nothing to “cause” the epilepsy and that epilepsy will not cause mental illness, unless the onset of symptoms was many years ago, and even then it is still uncommon.

Children are also often afraid of dying because of epilepsy. A physician's silence about death can heighten this fear. “I've had neurologists tell me they do not want to bring up death because they do not want to scare the children,” she said. “Ironically, though, often children will disclose in an interview that they are already thinking about death, but they are reluctant to bring it up, too.” By dealing with the issue of death directly, children with epilepsy will typically hear the reassuring news that the condition is rarely fatal and also that it should not affect longevity.

CREATE A NETWORK FOR PATIENTS

Another way to help children with seizure disorders is to create a network of patients who can talk to each other. “Talking to another child with seizures and finding out there are many other children with seizures can help,” she said.

Ironically, the younger the child was at the time of onset of seizures and the longer they have had the condition, the more this education is necessary. “When children develop seizures when they are two to three years old, the parents have received the education and assume the child has, too but the child typically has not.” These children need to know why imaging studies are needed, because they have never been told.

Learning more about the disease could also help children with epilepsy confront other people's inaccurate beliefs, which are still rampant, she said. For example, in a 2002 study led by Dr. Austin, nearly 46 percent of 19,441 adolescents surveyed in the general population said they thought that epilepsy could be contagious, and 40 percent thought that people with epilepsy were violent. Only 31 percent said they would consider dating someone with epilepsy, and 19 percent thought it was a form of mental illness (Epilepsy Behav 2002;3:368–375).

“If patients and their families can understand that other people who are unkind and judgmental act out of ignorance, their tolerant attitude can help them be less wounded when such episodes occur,” Dr. Austin said.

STIGMA CONTINUES INTO THE TEENS

Neurologists should not assume that children and adolescents with well-controlled epilepsy are free from the stigma issue, said James W. Wheless, MD, in a separate phone interview. Dr. Wheless is a professor and LeBonheur chair and chief of pediatric neurology at the University of Tennessee Health Science Center in Memphis, where he is the director of the Neuroscience Institute & LeBonheur Comprehensive Epilepsy Program at LeBonheur Children's Medical Center.

“Neurologists often assume that children and adolescents who are doing well from a medical standpoint don't face the stigma, but they do and it is huge,” he said. “It is far more extensive than the stigma faced by children and adolescents who live with other chronic conditions, such as diabetes or asthma.” He pointed out that, in Dr. Austin's survey, children with epilepsy view the condition as limiting as HIV or cancer.

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Dr. James W. Wheless: “Neurologists often assume that children and adolescents who are doing well from a medical standpoint dont face the stigma, but they do and it is huge. It is far more extensive than the stigma faced by children and adolescents who live with other chronic conditions, such as diabetes or asthma.”

Granted, people with epilepsy no longer live under the same shadow as they did through the centuries, when they were not allowed to marry and were presumed to be involved with witchcraft, Dr. Wheless said. However, unlike other illnesses, which have celebrity spokespeople like Florence Griffin-Joyner and Michael J. Fox who talk about their struggles with asthma and Parkinson disease respectively, it is rare to find celebrities who discuss their epilepsy publicly, he said.

“Families need good information to counter the misinformation,” he said. “Unfortunately, we neurologists are limited in today's medical environment regarding the time and therefore the amount of information we can give patients directly. However, we can direct patients and families to sources of good information, including Web sites,” such as those offered by the Epilepsy Foundation of America (EFA), www.EFA.org, and www.epilepsy.com, a project of the Epilepsy Therapy Development Project. The latter has, among other features, a teen chat room, which helps reduce the isolation that can accompany a stigmatized condition.

“Another enormous benefit for children with epilepsy is the network of camps for them, which are sponsored by local chapters of the EFA. Even today, camps that take children with other chronic conditions do not accept children with epilepsy. When physicians come to these camps and hold question-and-answer sessions, the children have a valuable opportunity to defuse myths they have heard about epilepsy.”

Any contribution the neurologist can make to provide dispassionate information will help, he said. For example, in his practice, the intake form for new patients has the question, “Do you have any other questions and concerns?”

“The responses to this question may give the neurologist an opportunity to answer questions that he or she didn't even know were on patients' minds, like whether they are going to die of their disease,” he said, agreeing with Dr. Austin.

REFERENCES

• Austin JK, Shafer PO, Deering JB. Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population. Epilepsy Behav 2002;3:368–375.