Nonprofit program empowers kids to be a partner in their healthcare

As seen in ModernHealthcare.com

By LAUREN BERRYMAN

Shortly after Laurie Strongin and Allen Goldberg’s son Henry was born in 1995, he was diagnosed with Fanconi anemia.

The disease – which can cause bone marrow failure, increased risk of cancer and organ defects – required Henry to undergo open heart surgery, a bone marrow transplant and other procedures.

In an attempt to make the treatments a bit more bearable, Strongin and Goldberg created a “magic closet” in the hospital, where Batman action figures would appear after Henry accomplished something difficult, such as getting a peripheral IV or radiation. The rewards always made the little boy – who was a Batman fanatic­ – smile, his parents recalled.

“For kids to do all the incredibly difficult things they need to do to recover, it’s going to take a lot more than medicine,” Strongin said.

A year after Henry died at age 7, his parents co-founded the nonprofit Hope for Henry in his honor. Inspired by the “magic closet,” Hope for Henry uses behavioral economics to nudge kids toward actions that are in their long-term healthcare interests, Strongin said.

The Washington, D.C.-based organization is working with child life specialists, technicians and nurses in 34 hospitals and more than 150 pharmacies in an attempt to bring smiles to kids’ faces, put parents at ease, and help clinicians provide more efficient care. The nonprofit’s programming is on track to be in 50 hospitals by the end of the year.

Patients who choose to participate in the nonprofit’s Super Rewards for Super Kids program, its most popular initiative, receive a game board that walks them step-by-step through one of 17 procedures­ including MRls, CT scans, blood draws and vaccinations­ using age-appropriate language and colorful graphics.

The program, available for patients ranging from toddlers to older teenagers, is designed to make the kids more comfortable during procedures, educate them about their own health, and reward them once treatments are completed. Prizes include jewelry, dolls, radios, digital cameras and portable DVD players. The organization offers the program to healthcare facilities at no charge, and the majority of rewards are provided to Hope for Henry in-kind by companies like Paramount, Kendra Scott and Lids.

Pediatric patients have few chances to make their own decisions in healthcare, and this program gives them the power to consent to something themselves, Strongin and Goldberg said.

Erin Behen, a certified child life specialist for Seattle Children’s, has been using the Super Rewards program with patients undergoing proton therapy at the Fred Hutchinson Cancer Center since January 2022.

“When [kids] first get a diagnosis, they’re often in the room with their parents. The medical providers come in, and they’re talking about all of this stuff at a very high level. This program breaks things down in a very digestible way,” Behen said.

HOPE FOR HENRY’s Roaring 20th!
Honoring Lindsay and Drew Karr.

SATURDAY, OCTOBER 7. The Schuyler DC