Parents disagree, may underestimate their quality of life, researchers say
MONDAY, May 24 (HealthDay News) --Children with epilepsy view their quality of life as being as good as that of their healthy siblings, a new study reveals.
The finding suggests that despite the numerous challenges they face in the form of seizures, cognitive and learning disadvantages, social stigma and the effects of medication, children with epilepsy have a far more positive take on their well-being than their parents have.
The study is the result of research conducted by scientists at the University of California, Los Angeles, and led by Dr. Christine Bower Baca, a clinical instructor in UCLA's department of neurology.
About 3 million Americans have epilepsy, the study authors wrote, and approximately 45,000 children below the age of 15 develop the condition each year. Causes for childhood epilepsy vary, and can include problems during delivery, quirks in prenatal brain development, head trauma, tumors, genetics, brain infection and prolonged seizures linked to fever.
To gain insight into how the children with epilepsy viewed themselves, the research team interviewed 143 children with epilepsy (matching each one to a sibling without epilepsy) and their parents.
Interviews were conducted eight to nine years following a diagnosis of epilepsy. Among the children with the condition who were assessed, the average age was 12.
In terms of ranking such quality of life variables as behavior, general health, self-esteem and physical function, Baca and her colleagues found that parents rated their child with epilepsy much lower than their healthy child.
Children with epilepsy, in contrast, felt they were on par with their healthy siblings.
"In this regard, parental perception of their epileptic child may be distorted because of their perception that they have a child that is 'sick,'" Baca said in a news release. "Such a distortion could lead to an underestimate of the child's quality of life."
Noting that children and parents may not always share the same concerns, Baca added that children and parents "may draw on different values and perspectives to evaluate quality of life" without realizing it. Getting a handle on these critical differences in perspectives, she said, could be helpful down the road when designing support services for children as they enter adulthood.
Baca and her team reported the findings online in Value in Health.
For more on epilepsy, visit the Epilepsy Foundation.
-- Alan Mozes
SOURCE: Value in Health, May 2010, news release.
All rights reserved