Archive for Sunday, December 7, 2003

Cruel childhood illnesses can also bring families together

December 7, 2003

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Eighteen-year-old Nathan just had his fourth round of chemotherapy. His eyelashes and eyebrows have fallen out.

He's got a definite edge on other kids when it comes to writing that college admissions essay about life-changing experiences.

Nathan's dad says it feels unreal to take a kid to a hospital to get him pumped full of poison. Calling the house one day, I get Nathan's younger sister.

"It's rough," she says.

Pediatric cancer and other childhood illnesses have long tentacles. They pull everyone in.

Ric Steele, a Kansas University assistant professor of psychology, and Phoebe Williams, a professor of nursing, want to understand what makes family members hurt and what helps them heal when a child gets very sick.

Parents of a child with pediatric cancer can suffer post-traumatic stress disorder, Steele says. One minute, they feel they're witnessing their lives from a great distance. At another, fear claws their guts.

Steele has researched how mothers cope with pediatric cancer. In a study published by the Journal of Pediatric Psychology, he followed mothers for 24 weeks. He found that the stress of caring for a sick child was persistently high but that feelings of distress, on average, declined.

Why did some mothers' distress remain high? It was a perception that their children were suffering physically, according to a second study by Steele.

Sustained parental distress isn't bad only for the parents, either. It can also elevate the sick child's distress.

Sharon Manne, of the Fox Chase Cancer Center in Philadelphia, has found that such a child has more psychological symptoms when parents are persistently distressed than when the parents' stress abates.

Does it help for family members to talk about the illness? That's the conventional wisdom, Steele says, but it hasn't been studied in families where a kid has cancer.

Research does show that families are better off if they, and not the hospital, choose the kind of help they get, whether that's from a social worker, a minister or nobody at all.

What about the brothers and sisters of kids who have chronic conditions? If KU's Phoebe Williams is right, it helps the siblings to talk with others who are in the same boat.

In one of her studies, children ages 7 to 16 who had a brother or sister with a chronic disease felt better about themselves after a week at camp with other kids who had sick siblings, compared with a group of kids who didn't go to the camp.

Williams said the camp became even more helpful if it included nurse-led education sessions and discussion groups for siblings and parents.

In these groups, the kids learned about their siblings' illness or disability and got a chance to open up about their feelings. Parents learned about the various needs they and their children have when a child is chronically ill.

Williams' findings appeared in a recent issue of the Journal of Pediatrics.

A 19th century Italian writer, Giuseppe Mazzini, called the family "the country of the heart." In this country, the illness of one person brings a small blessing: a deepening connection of many people as they rise to meet the illness' cruel demands.

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