Subscribe to Here’s the Deal, our politics
newsletter for analysis you won’t find anywhere else.
Thank you. Please check your inbox to confirm.
Update: Ariella Stein, the 11-year-old girl featured in this story on Hope for Henry's incentive program Super Path to Super Duper Better, died on May 9. You can see and share her story in the video above.
Few scenarios are harder to witness than the suffering of a seriously ill child. For kids with life-threatening diseases, survival often requires procedures that are painful and scary. But a Washington nonprofit is encouraging kids to be active in their own care by rewarding them for enduring their treatment. Paul Solman reports on Hope for Henry’s "Super Path to Super Duper Better" program.
Few things are harder to witness than a seriously ill child.
Tonight, a look at ways to persuade these children to comply with the difficult medical treatments.
Paul Solman explores a program created by a not-for-profit foundation called Hope for Henry.
And we should note, the "NewsHour"'s executive producer, Sara Just, sits on the foundation's board.
The story is part of our weekly series Making Sense.
Eleven-year-old Ariella Stein loves to dance.
Tap, jazz, hip-hop, ballet, lyrical.
She's been at it since she was 2, but, lately, she's spent more time in hospital wards than on dance floors.
I have a type of cancer called Ewing's sarcoma, which is a bone cancer.
Over the past two years, Stein has been medically bombarded.
The type of chemo called cyclophosphamide, and irinotecan, which is another type of chemo. I had a big surgery on my leg. So, I would say that was pretty hard.
Ariella's mom, Erica Stein, explains that kids, even when told their life depends on it, often resist horrible treatments.
You're not going to be able to say, do this because you have to.
How was your sleepover this weekend?
And so a critical question for hospitals and parents alike, how to get a kid to weather such assaults.
And that's where Super Path to Super Duper Better comes in, a behavioral economics program to help kids comply with traumatic treatments in which they earn play cash redeemable for prizes.
Child life specialist Kelly Beck:
The kids identify challenges that they're facing in the hospital, whether it's swallowing pills, or going through radiation treatment, chemotherapy, anything that the child or teenager identifies as difficult.
Where do you want to put your sticker?
And we come up with the amount of Hope for Henry bucks that they earn.
The kids are asked to pick their stiffest challenges, stick them on a superhero-themed game board and decide how many game bucks they deserve for completing them.
The goal is to help them become active in their care and giving them that control in what they have to do, because they are so out of control.
They are getting radiation on my spine now, and that goes through my guts. And that makes my stomach hurt sometimes, and then I just feel really tired and nauseous.
Dr. Matthew Davis:
Hey, Sophia, how are you?
Good. How are you?
Pediatrician Matt Davis is testing the impact of the program.
Dr. Matthew Davis, The question fundamentally is, does that sort of incentive or reward system help children feel better? Are their symptoms better? Are their emotions different? Are their experiences of discomfort different?
That somehow makes it more tolerable for the child and for their parents.
He's magical. And whenever I hug him, it sends a hug straight to my dad.
The program has certainly helped Ariella and her family.
Every time she went through something difficult, getting the bucks and being able to say, look, that was horrible, but now look what you can do, was really helpful.
Super Path, already in 10 hospitals and opening in five more this year, is run by D.C. nonprofit Hope for Henry, inspired by Henry Strongin Goldberg, whose rare genetic disease required a bone marrow transplant at age 5 and months in the hospital.
Henry's world went from technicolor to black and white. And we had to figure out, like, how in the world are we going to keep him upbeat and optimistic and hopeful, so he can do all the incredibly hard things he has to do to get better?
Henry's mother, Laurie Strongin, came up with an answer in his hospital room.
I looked in the corner and I was, like, oh, what do you know? There's a magic closet in the corner. And, Henry, I bet you if you take that big pill or if you let them stick your finger and test your blood, that that magic closet will have a treat for you.
Strongin set up a magic closet in each hospital Henry visited stocked with his favorite toy.
Henry Strongin Goldberg:
Yes, Batman, Batman action figure.
Batman figures of every variety. And he would earn them for adhering to his medical plan.
In his mind, that made all the difference.
This incentivization. It's hard to imagine how much people going through transplants have to endure. But I can tell you, because I was Henry's mom and his prime nurse, he would take 26 medications a day.
Oncologist Aziza Shad was one of Henry's doctors.
Dr. Aziza Shad:
It helped him because he made himself a superhero. And superheroes can fight stuff. So Henry was going to fight whatever he was confronted with.
Henry fought for two years. He died at age 7. But the program he inspired promises payoffs for everyone in a treatment ecosystem, says Dr. Shad.
Number one is compliance, so that the child is taking their medicine or the patient is taking their medicine. Number two, that the parents are less stressed out, and then the staff is less stressed out.
And look says, Dr. David Asch, who studies behavioral economics interventions in health care:
Dr. David Asch:
We all know that money is a motivator, right? This expression is chlorophyll is not the only green catalyst. Money does matter.
Not to be hard-hearted here, but hasn't money been shown to often backfire as an incentive?
It turns out, in a lot of these experiments, the amount of money isn't that important. It's how you deliver it, whether it's exciting, whether it's a kind of thing — it's almost a way to keep score in a game.
That's Henry and his girlfriend, Bella.
Henry's mom is now the CEO of Hope for Henry.
When I talk to people about the program, inevitably, they ask about the correlation between Hope for Henry bucks and U.S. dollars.
And doesn't every single kid want a brand-new computer? Doesn't everybody want an iPad?
Yes, that's what I would have thought. I would have thought, if I'm playing, I'm going, well, wait a second, they're just letting me set the price.
Kids do not game the system. What kids want is to learn how to cope and get through their medical treatment and get so far along the path to Super Duper Better that they're back home.
Ariella Stein certainly doesn't game the system. She actually puts her Hope for Henry bucks towards Build-A-Bear gift cards, makes the bears.
And I go to different local hospitals and give out the bears to kids. Making other kids happy is — just makes me happy, especially because I know how they feel.
Helping others motivates her to stick with her own treatment.
A lot of the times, I don't want to go to radiation, but then I think, well, if I do that, I can get a gift card to make other kids happy, because that's usually what I get gift cards for.
Dr. Shad thinks the program has long-term benefits as well.
The long-term outcome for me as a pediatric oncologist is that the child will have less PTSD.
I have seen many, many, many families get divorced and separated. I have seen siblings run away from home. I have seen risk-taking behavior in childhood cancer survivors. I have seen young girls get pregnant early, only because of the stress that they had to go through.
Moreover, says Dr. Shad, there are economic benefits.
I think what you spend up front translates into tons of savings down the road. Children who deal with it in this, with all the supports around them, have fewer stays in the hospital and fewer complications.
Researcher Matt Davis hopes to have his data on the program by early next year.
But Erica Stein's testimony about daughter Ariella suggests what he will find.
She's a very, very silly, sassy, goofy kid, and that hasn't changed at all.
Even though she's back in the hospital recovering from complications after a bone marrow transplant.
This is economics correspondent Paul Solman.
Watch the Full Episode
Paul Solman has been a business, economics and occasional art correspondent for the PBS NewsHour since 1985.
Support Provided By: