Serious childhood illnesses can bring family members
together
by Roger Martin
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 University of Kansas 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.