Helping Parents Make a Difficult Journey
Families of Seriously Ill Children Support Each Other
Social workers find work with seriously ill children challenging
but rewarding.
By Lyn Stoesen, News Staff
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| Illustration: John Michael
Yanson |
A seriously ill child can bring challenges to a family that seem
insurmountable. Parents grappling with a child's diagnosis can
face fears for that child's future, wonder how the rest of the
family will be affected and worry about their own ability to cope.
Navigating the increasingly complex medical system can add stress
and anxiety.
Social workers who work with seriously ill children understand
the many ways a diagnosis can affect a family. And they also know
that one of the most effective means of helping parents is to
connect them with each other and help them empower themselves
— and understand that they are not alone.
A holistic perspective. Kate Eastman founded the Jason
Program in Maine in 2000. The program provides a current caseload
of 20 to 30 seriously ill children with coordinated support and
services across care settings. The organization is small but collaborates
with other groups, volunteers and medical providers across the
state.
The model of care at the Jason Program is strongly influenced
by the social work perspective, Eastman explained. "We look
at every aspect of a child's life from three perspectives — medical,
emotional and spiritual. We believe strongly in a holistic perspective
of the child and the family."
Working with these families requires understanding the layers
of emotion that are in play among everyone involved. One dynamic
Eastman sees is what she calls a "conspiracy of protection.
The child is protective of the parents, the parents are protective
of the child and professionals are protective of their roles.
When you start to unravel what that dynamic is, it's grief and
anxiety."
Another element of the work, Eastman said, is the need to respect
children at every age. "Three year olds have their own perception
and understanding, and it's every bit as valid as an adult's,"
she said. "[Young children] often have an understanding of
death and dying that we don't give them credit for."
Helping parents is a major part of the work, as well, and requires
sensitivity to the family's needs. "We don't ask people to
let go of hope for cure — but we simultaneously offer them the
space to prepare for death," Eastman explained. "That's
a fine balance."
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From November 2006 NASW News. © 2006 National
Association of Social Workers. All Rights Reserved. NASW News
articles may be copied for personal use, but proper notice of
copyright and credit to the NASW News must appear on all copies
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