Chronic Fatigue Kids' Families Distressed: Excess Suffering Seen in Families of Children With Chronic Fatigue Syndrome
Thursday, February 03, 2005
By Daniel DeNoon, WebMD Medical News

Feb. 3, 2005 - The families of children disabled by chronic fatigue syndrome are more distressed than the families of children disabled by juvenile rheumatoid arthritis, a new study suggests.

M. Elena Garralda, MD, and colleagues at Imperial College London gave psychological tests to one parent -- mostly mothers -- of 28 children aged 11 to 18 who had been diagnosed with severe chronic fatigue syndrome. They also interviewed the parents of 30 kids with juvenile arthritis and 27 kids with emotional disorders.

Garralda's team found that the chronic fatigue families had more chronic fatigue symptoms, more mental distress, more emotional overinvolvement, and more family-illness burden than the juvenile arthritis families. In many ways, they note, the chronic fatigue families were more like the families of children suffering emotional disorders than like the families of children suffering chronic physical illness.

"This suggests possible shared family risk factors and/or consequences of illness in chronic fatigue syndrome and emotional disorders, which may be taken into account in the management of both disorders," Garralda and colleagues write in the February issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

The charge of parental involvement sounds familiar to Niloofar Afari, PhD, associate director for the chronic fatigue syndrome cooperative research center at Harborview Medical Center, Seattle. Afari notes that it's hard to diagnose chronic fatigue syndrome in adults and much, much harder to diagnose it in children. That, in addition to having a mysteriously disabled child, puts huge stress on families.

"Any time you have a child who is sick and having problems that are difficult to diagnose and you go from doctor to doctor to see what is going on, you run the risk of being called an overinvolved parent," Afari tells WebMD. "In such a difficult-to-diagnose illness, with not too many doctors being familiar with what it looks like, it leads to parents being overinvolved with trying to get adequate services and adequate diagnosis."

Does a child's chronic fatigue syndrome distress the family, or does a family's distress cause chronic fatigue syndrome in a child? Cause and effect are difficult to sort out in studies such as Garralda's, says Brandon Briery, PhD, assistant professor of clinical pediatrics at the University of Miami School of Medicine. Briery, a clinical psychologist, studies and treats children with chronic diseases.

"Certainly, caring for an ill child takes its toll on parents with respect to their physical and mental health because they find themselves putting the needs of the child before their own needs," Briery tells WebMD. "There certainly has been a long history of research regarding parental mental health and how that is affected by - and may be affecting - children's health issues. I don't think that there has been a lot of conclusive evidence that can really say which is the cart and which is the horse."

On the other hand, Briery says, a family's mental health has a lot to do with its physical health.

"I do know that there has been a fair amount of interest in enmeshment, a kind of overinvolvement or web of relationships within the family that are not always healthy," he says. "I know there is a pretty consistent finding that in families that are enmeshed or overinvolved, there are greater levels of psychological symptoms. And certainly what we have learned about the mind-body connection is that sometimes mental issues manifest themselves in a physical way."

Family involvement, Afari says, is crucial to the treatment of childhood chronic fatigue syndrome.

"It is actually very important to get the family involved because the family unit supports the child in the cognitive-behavioral therapy and gradually increasing physical activity that is most helpful for them," she says. "Historically, there has been a lot of stigma associated with chronic fatigue syndrome, so of course it is possible there is a bigger burden of illness these families deal with. But now that we know it for what it is, things are getting better."

SOURCES: Rangel, L. Journal of the American Academy of Child and Adolescent Psychiatry, February 2005; vol 44: pp 150-158. Niloofar Afari; PhD, associate director, chronic fatigue syndrome cooperative research center, Harborview Medical Center; lecturer, University of Washington, Seattle. Brandon Briery, PhD, assistant professor of clinical pediatrics, University of Miami School of Medicine, Florida.