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Child Life Specialists Help Children and Families Cope with Diabetes

New York (Aug 20, 2010)

Child Life Berrie Center

For a young child or teenager, a diagnosis of diabetes can be overwhelming and frightening, not only for the patient, but also for their family. Many have questions and concerns and need to be able to turn to someone who can answer their questions, provide reassurance, and help guide them each step of the way. Filling that important role are the Child Life Specialists of the William R. Berkley, III, Child Life Program at the Naomi Berrie Diabetes Center at Columbia University Medical Center.

The Berrie Center is one of three Diabetes Centers of Excellence in New York State and has been cited by the American Diabetes Association for its quality care. Guided by the motto, "the care until the cure," the Berrie Center offers comprehensive multidisciplinary diabetes care, family-centered services, an insulin pump program, and educational programs. The goal is to help patients integrate optimal diabetes management into their everyday lives. Their special focus is on involving families in the treatment process - a concept that differentiates the Berrie Center from many other diabetes treatment facilities in America.

Role of the Child Life Specialist

Child Life Specialists are credentialed professionals whose goal is to make healthcare environments as comfortable as possible for children and their families. They address the emotional, developmental, and psychosocial needs of patients and families. At the Berrie Center, Child Life Specialists help recently diagnosed patients adjust to their new diagnosis, provide them with an outlet to express their fear or frustration, and educate them on both the disease and treatment. They work with patients as young as 16 months up to the age of 21.

"A lot of families have difficulty putting into words what they don't understand about diabetes and what it means to their child and to them," says Jaclyn Gee, MS, CCLS, Child Life Specialist. "My role is to initiate that discussion and to make sure the family understands everything. We're there to support them in any way we can."

Understanding and Controlling Diabetes

Diabetes is a condition in which sufficient amounts of insulin are either not produced, or the body is unable to use the insulin that is produced. A metabolic disorder, diabetes affects the way the body metabolizes, or uses, digested food to make glucose, the main source of fuel for the body. The three main types of diabetes include: type 1 diabetes, type 2 diabetes and gestational diabetes (occurring only during pregnancy). Diabetes is often associated with long-term complications that can affect every system of the body and, if not controlled, can be life threatening.

Education: A Key Component

The Berrie Center offers a multidisciplinary team comprised of a nurse, nutritionist, nurse practitioners, dietitians, endocrinologists, psychologists, diabetes educators, ophthalmologists, and licensed creative arts therapists. The Child Life Specialist helps develop an individualized plan of care that encompasses emotional support, preparation and education, therapeutic play, and creative expression. The presence of the Child Life Specialist also helps reduce some of the anxiety a child may feel as he or she sees various members of the team.

Play is an important part of the educational process for a child. "Parents are going to be learning about diabetes, and the child is going to learn everything as well," says Ms. Gee. "There is a lot of hands-on playing, especially with the younger kids. I might use toys if I see that they are not interacting. I want to build a relationship with them."

"The children hear what the educators are telling their parents, and sometimes it's hard for them to understand, so I'll take them out and sit in the waiting room," continues Ms. Gee. "I have a doll that I use to show them about the syringes and needle sticks, etc. Some kids won't touch it, and some get right on board and want to give the doll shots over and over again."

If a child is a candidate for and would benefit on an insulin pump, Ms. Gee uses visual aids, including a doll that shows where the insulin goes in and how it moves throughout the body. "Insulin pumps are able to deliver smaller doses of insulin than the syringes," says Ms. Gee. "If a child is recommended for an insulin pump, we speak with the patient and family to see if they are emotionally ready."

Working with Teens

Teenage years are challenging as adolescents experience sexual and emotional changes, and they are especially difficult for young people with diabetes. Being different in any way from their peers can be emotionally stressful. Ms. Gee meets with teens to help them cope with having diabetes and to emphasize the importance of treatment. She also discusses how to explain diabetes to their friends. "That's important because they are leaving class and checking blood sugars, and before lunch they have to get their insulin," she says.

A Family Experience

When a child is diagnosed with diabetes, it affects virtually every aspect of his or her life and also impacts on the lives of the other family members. "The children and families we work with learn how to do everything here and then are able to go home and do it," adds Ms. Gee. "We explain things to the child in words that they can understand. By encouraging families and giving them the tools to help their child, they learn to do it on their own. We help put it all together."

Faculty Contributing to this Article:

Jaclyn Gee, MS, CCLS, Child Life Specialist, William R. Berkley, III, Child Life Program, Naomi Berrie Diabetes Center at Columbia University Medical Center

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