CAPES program helps patients tell children about their illnesses

Oct 17 2016

There was no question that Nancy Coronado would tell her two young children everything about her breast cancer diagnosis. She and her husband wanted to keep them informed of all aspects of treatment and care.

"From the beginning, my husband and I told them what I had," she says. "There was some crying when I said cancer, but it soon became good for us to talk about it."

Coronado found support and reassurance in her efforts from her care team and through an innovative program offered by child life specialists at Harris Health System. She understood the severity of her disease and wanted her children to be knowledgeable.

"I didn't want them to hear and see the effects of my treatment and not know what I was going through," she says. "One thing I didn't want them to think was that what mommy is going through is because of anything they've done."

Talking to her 9-year-old daughter, Carla, and 4-year-old son, Ricardo, was easier than she thought. She told them that her strong chemotherapy treatments would result in significant side-effects like nausea and hair loss.

"We made the hair loss seem like a good thing, because it meant the medicine was working," Coronado says. "When I started losing my hair, my children were jumping up and down and happy because it meant the medicine was working against the cancer."

For Katrina Souder, senior child life specialist, and coordinator of Harris Health's program, Children of Adult Patients Enduring Stressors (CAPES), and Zenia Hudson, child life specialist, Coronado's willingness to be upfront with her children was a good approach.

"It's difficult for parents to come to terms with a diagnosis, let alone feel comfortable having this conversation with their children," Souder says. "Children can sense something is different or wrong and it can be very scary and confusing for them. Often times, the children suffer quietly and are thinking the worst because no one is giving them the right information."

Through CAPES, child life specialists help patients with various diagnoses—a majority of them breast cancer—identify the family's needs and work to promote positive coping by using accurate, easy-to-understand, non-threatening and age-appropriate information.

"Our goal is to equip parents with knowledge by providing educational resources and therapeutic activities that address typical questions and responses," Hudson says. "Typically parents share the news; however, a specialist can do a face-to-face visit to provide additional support."

The role of child life specialists is traditionally one of helping hospitalized children cope with their illness, treatment and hospital stay. However, CAPES takes child life specialists beyond a hospital's walls. While not unique, Harris Health's program at Lyndon B. Johnson, Ben Taub and Quentin Mease hospitals, Smith Clinic and Harris Health Outpatient Center is part of an emerging trend in healthcare that aims to care for the holistic needs of patients.

Since being diagnosed in June, Coronado has undergone several chemotherapy treatments that have reduced her cancerous tumor. CAPES has taught her ways to empower her children and make her well-being a priority.

"I quickly figured out that if I'm sad, my children are sad, too," she says. "I had to change my attitude and be happy for them and for myself. Talking to child life gave me peace of mind and let me know that I'm telling my children the right things."