Tuesday, December 10, 2013

Beads of Courage: A Program that Chronicles the Bravery of Patients Comes to All Children's


The plastic containers arrived two months ago. Each holds all manner of shiny beads, carefully sorted by shape, color and design. And each holds a powerful, personal story to be told now by the patients of All Children’s Hospital.

In their own way, the beads are no different than medals earned by soldiers on the battlefield and displayed proudly on uniforms. Every small object has its own special meaning – standing for an experienced endured, a fight faced, an ordeal overcome.

They are Beads of Courage, a thriving therapeutic program for children in 170 hospitals worldwide, with All Children’s recently joining its ranks. In this holiday season of hope and giving, the beads are playing an especially fitting role: helping lift the spirits of many kids in need of a boost – thanks to the determination of the Child Life Department and generous support of donors.

The program recognizes that on any given day, young patients can face a stressful barrage of tests, shots, procedures, surgeries, pain and uncertainty. But at the same time, those frightening and difficult experiences can become a source of pride and success for children and family members – a way of visually conveying their individual journeys and conquests to anyone they meet.

It is a way of soothing the struggle, knowing that every difficult moment can be rewarded by a corresponding bead. And one by one, strung together in ever-growing strands, the beads convey a powerful, nonverbal tale of bravery on a very real battlefield for each child.

“So many of the kids who come to All Children’s Hospital have life-threatening, chronic illnesses that they deal with day in and day out,” said Child Life director Kristin Maier. “It’s very different than a typical childhood. And Beads of Courage is a way to capture that story and to build their legacy.”

If a child spends a night in the hospital, they get a bead for that. If they have a blood draw, undergo a procedure, or travel a long distance to get to the hospital, they receive a bead signifying each event. Some children wear their strands around their necks, some hang them from their IV poles or drape them across the walls of the room.

“For parents, it’s a way of saying, ‘Look what my child has gone through,’ – it’s very endearing and moving to them,” Maier added. “To children, it’s a sense of pride, like a banner: ‘Look at what I’ve done!’ ”

Due to the expense of the program, it has been initiated incrementally: first with Cystic Fibrosis patients, next with patients dealing with cancer and blood disorders, and then with children on the cardiology floor. But the plan is to eventually make it available to the entire patient population at All Children’s. And judging from the reaction of patients, family members and even the caregivers, that’s no surprise.

Just consider 8-year-old CF patient Scott Hosfield, who sat on his bed in the Pediatric Intensive Care Unit counting his latest haul of beads with Child Life specialist Katie McGinnis. His stay began at All Children’s seven weeks earlier and Scott became the first patient to be enrolled in Beads of Courage at the hospital.

All of his daily respiratory treatments, blood draws  from insulin injections, and experiences related to his care had pushed his total over the 800-bead mark on a recent morning – good for a special bead to signify that impressive total. His favorite: the yellow “Minion” bead modeled after the characters in the movie Despicable Me.

“Where we at Mom?” he asks mother Heather Hosfield as the counting continues. 847…848…849.

“I think it has helped him a lot in doing all his treatments and pokes he gets,” she said. “It’s given him something to look forward to for all this pain and suffering he has to go through while he’s here. Before we did a treatment and that was it. So I think it gives it something to say, ‘Oh yes, I get a bead now.’ He has all these beads and everybody tells him how crazy it is that he has this many but that it’s awesome that he does. It gives him something to look forward and it allows me to see him smile.”

There are smiles up and down the hall outside Scott’s door as McGinnis helps him stretch his long strand of beads past a group of admiring nurses and some 20 feet from his room. It was McGinnis who first suggested to Maier and the Child Life staff that the Beads of Courage program would be worth bringing to All Children’s. She had heard of it five years earlier at the annual Child Life conference while working for another hospital. That inspired her to help bring it there, and she immediately saw the impact it had on patients and parents.

One story always stays with her: how a young girl with a brain tumor had collected the longest of bead strands during treatment that spanned 18 months. She had been out of school the entire time, and when she returned McGinnis accompanied her with her seemingly unending length of beads. The girl was reintroduced in the gymnasium before more than 500 classmates, and she used the thousand-plus beads as a tool to tell her story without words.

“She held one strand of the beads – the students and teachers all parted – and I walked through the gymnasium with the other strand and it stretched all the way across to the other end of the gym. There was a collective gasp: teachers were crying, kids were crying. And then everybody just burst into applause. So the moment went from this patient feeling awkward and scared about going back to school to being so proud of all that she had done. Her peers were just amazed and rallied around her.”

McGinnis has observed another kind of magic in Beads of Courage – the bond it reinforces between patients and caregivers, hospital staff and families.

“If a nurse has to come in and do a blood draw, or access their port, that can be something they don’t enjoy doing,” she said. “But with Beads of Courage, it’s really awesome because the nurses and other caregivers are the ones who actually give the patients the beads. … If a nurse has to access a port, she can follow up right after that and give the patient a black bead, which represents a poke, and say, ‘I’m really sorry that I had to poke you, I know that wasn’t fun. I’m so proud of you – you were so brave.’ ”

For 17-year-old Madeline Jones, Beads of Courage has been a constant source of encouragement and pride for eight years. As a child, she was hospitalized in Pittsburgh Children’s Hospital with hypertrophic cardiomyopathy, a condition in which the heart muscle becomes thick and makes it difficult to pump out the blood. Her hospital had instituted the Beads of Courage program and it gave Madeline an immediate boost.

“I thought it was really cool to be able to see everything I went through,” she said. “Sometimes, you think it’s just one blood draw, but it turns into 100. It makes a difference because you can tell people everything you’ve been through and they can also see it at the same time.”

Madeline has been through a lot, indeed. She recently underwent a heart transplant at All Children’s, and a large, blue heart-shaped bead on her long strand prominently signifies that experience. She and her parents, Gina and Keith, were understandably delighted when All Children’s added Beads of Courage, which meant Madeline could continue adding to the collection she’d started in Pittsburgh, and meticulously fill out the accompanying journal that describes each new bead she earns.

“She loves this program, and we love it,” Gina said. “She wears the beads like a badge of honor. I remember when we were up in Pittsburgh, and I’d go past the other rooms, and we would look at their strands and go, ‘Wow – and now we’re one of those wows.”

 “It gives the kids something else to focus on,” Keith added. “This distracts them, and they can now focus on something else when they see Child Life representative come, or the nurse come with a fist-full of beads. They get excited.”

The beads are not your run-of-the-mill, crafts store variety, either. They are high-quality, glass-based objects that are both durable and aesthetic. That’s one reason the Beads of Courage is an expensive program to incorporate, it’s why it took roughly two years for the Child Life department to add it to their many patient-friendly endeavors.

“We knew we would have to get philanthropic support for it,” Maier explained. “So we wrote a proposal to the Northeast Exchange Club, the local chapter, and shared the story of how Beads of Courage can make a difference in the lives of our patients. They embraced it and they funded the whole start-up, which was near $20,000.”

The All Children’s Foundation obtained additional sources of donor support, including a generous gift from the Sayegh Family, whose daughter Jackie lost her life in the World Trade Center terrorist attack on Sept. 11, 2001.

“They picked up an additional year of funding, so we’re good for two years,” Maier said. ”The beads are finite, but the procedures and the kids are not. So we’re going to need ongoing funding for the program.”

Meanwhile, Maier and her staff are enlisting volunteers from within the hospital and the community to help create special “Bead Bags” with eye-catching patterns to store and transport each child’s bead collection. (Instructions on how to do so, along with how to obtain an official logo to be sewn onto each bag, can be obtained on http://beadsofcourage.org).

Inside each one, the story of a child’s courageous fight is ready to unfold for the world to see.

Faces and Places” is a regular column written by Strategic Communications Editor Dave Scheiber highlighting those people, places and things that make All Children’s Hospital special. Video by Mollie Scheiber.



















1 comment:

  1. Scott Hosfield is one super kid. We are family friends and he is just amazing. This is a wonderful program.

    ReplyDelete