Children with epilepsy view disorder one way; their parents view it another way

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The fact that kids’ perceptions differ from parents’ perhaps isn’t surprising. But when each is asked about the child’s illness, the implications of that disconnect can be thought-provoking.

Researchers from UCLA’s department of neurology asked 143 children with epilepsy, each of whom had a healthy sibling, what they thought of their quality of life as compared to that of their siblings. They asked the parents to weigh in as well.

The kids, with an average age of 12, thought: Eh, about the same. The parents thought: Oh, much worse.

The researchers suggest that, for starters, kids are simply worried about different things than their parents. That math test still needs to be passed, that ballgame still beckons. Second, parents are more likely to be anxious about how the condition will affect their kids both in the short term and in the long term. They understand that the potential for seizures is just the beginning -- they worry about the possible long-term ramifications for jobs, income, education and marital status.

But the researchers also write: ‘Having a chronic disease, or disability, does not necessarily mean that a person is unsatisfied with their life, despite what others may think — a term denoted the disability paradox.’

Here’s the news release from UCLA; the abstract of the epilepsy study, published online in Value in Health; and epilepsy information from the Epilepsy Foundation.

Similar results have been found, the researchers note, among kids with cancer, asthma, diabetes and other disorders.

It would seem this paradox should be kept in mind when considering the needs of children -- and adults -- with other conditions as well.

-- Tami Dennis