Specialist helps Maryland kids with terminal illness

WESTMINSTER, Md. (AP) — Children usually don't have the words to express what they think or how they feel, so Child Life Specialist Jill Horn helps them work to express themselves when they're seriously ill.

Carroll Hospice and Home Care now serves the community with a Pediatric Palliative Care program called Children's Advanced Relief Encouragement and Support.

"It's a program that helps children with a terminal illness that aren't ready to go into Hospice," said Carroll Hospice and Home Care Executive Director Diane Link.

Link said the program works to fill a need in the community. Hospice has always served children in addition to its adult services, but found there was a need for support prior to that level of care. The service features the county's only Child Life Specialist, who gets the children to open up by playing age-appropriate games and activities, Link said.

Horn said the games help with the patient's adjustment to their illness.

"A child's work is essentially their play," she said.

To overcome the possible communication barrier and to make them comfortable, the activities - board games, dolls, action figures and a sand tray - help Horn discover how the child feels about the illness or treatments being given to them.

"We basically are trained to provide the emotional support that children need to encourage optimal development and adjustment to their environment and their illness," she said.

Horn has found that children are resilient and rarely complain, she said.

"A good part of the time, kids are more accepting of their illness (than are adults)," Horn said.

Horn also works with the child's parents to help them understand why their child is acting the way they are and with siblings, who may feel left out because so much focus is on their brother or sister. She typically works with them through play, education, preparation and self-expression activities as well, Horn said.

CARES deals with whole body concepts, Link said, by helping the child cope with physical symptoms of the illness, and serving the entire family with spiritual and emotional support, community resources and social work needs. Nursing staff, social workers, physical and speech therapists, chaplain, volunteers, home health aides and bereavement counselors also help staff the program.

The at-home care is usually provided about one to three times a week but could be offered every day, Link said. So far, the service has been provided to two children, but Carroll Hospice typically sees about three children every year, she said.

Insurance and medical assistance typically provide coverage of this program, but that does not cover the entire cost, Link said. The rest is provided by donations and fundraising.

While the nature of her job is difficult, Horn said working with the patients gives her great satisfaction.

"I feel like I'm in such a rewarding profession," Horn said.


Information from: Carroll County Times of Westminster, Md., http://www.carrollcounty.com/

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