With his mask and cape, Henry would fit in well with the “Incredibles” family. But instead of the big screen, Henry’s super-hero deeds are coming to the aid of Akron Children’s Hospital’s patients.
Henry is the inspiration behind the “Hope for Henry” Foundation, which offers “super rewards for super kids,” preparing for medical procedures like an NG tube, EEG, lumbar puncture, CT scan, or a PICC line. The goal is to make sure information is provided step-by-step to reduce anxiety and make for a successful clinical experience.
The program includes individualized game boards for 16 procedures, with stickers depicting each step of the process, phrases of positive reinforcement, and “I Did It” stickers to allow the child to mark their progress towards success. Once complete, patients can earn “super” rewards like fidget spinners, Legos and jewelry.
It’s a new resource for Akron Children’s child life specialists, who play an integral role in patient care. Child life specialists share age-appropriate information to best prepare children for medical interventions that may seem scary.
Success is often achieved by showing and explaining (such as showing a photo of an operating room and donning a surgical cap) and giving patients some control (such as choosing the “flavor” of their anesthesia gas). The work they do can reduce stress, keep ORs and clinics running smoothly, improve outcomes, and help children better understand and cope with chronic illnesses.
Child life specialists can quickly determine which kids need more information (or less), and which kids do better with rewards and incentives. It is generally accepted that kids do better when they know what’s happening and are not caught off guard.
“Hope for Henry” has been implemented in the transitional care unit and the infant/toddler unit and the hematology-oncology unit. It will eventually be integrated throughout all the areas of the hospital where child life is offered.
Henry, the super-hero who loves to tell kids “you are super!” is based on a real boy. Henry Strongin Goldberg was born in 1995 and, two weeks later, was diagnosed with Fanconi anemia, a rare disease that mainly affects the bone marrow. Though he spent many nights in the hospital and suffered numerous setbacks, his parents described Henry as “the master of living well and laughing hard.”
When Henry died in 2002, his family was determined to honor his memory and support other hospitalized children. On what would have Henry’s 8th birthday, the Hope for Henry Foundation was born.
So far, the program has touched more than 95,000 children being treated at children’s hospitals across the country.
Child life specialists Katie Fleck and Renee Redenshek are leading the roll-out of the program at Akron Children’s.
“This is a great new resource for us,” said Katie. “It’s fun, colorful and can be easily adapted for each child’s needs. It’s even better when we combine it with our traditional tools – medical play, letting kids feel and touch things like a real NG tube or surgical mask before their surgery. It’s going to look a little different for each kid.”
Renee added that the program also works well for her patients, who tend to be hospitalized long term.
“I often use the gameboard as a refresher for patients undergoing the same procedure several times,” she said.
The child life specialists record the use of the program and clinical observations on a HIPAA-compliant data sheet, so the program lends itself to research possibilities.
“Hope for Henry is thrilled to bring our innovative Super Rewards for Super Kids program to Akron Children’s,” said Laurie Strongin, founder and CEO of the non-profit. “Our shared commitment to an exceptional patient experience makes this expansion a natural fit. We look forward to a long-lasting, high-impact partnership.”