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Pediatric burn patient Olivia Brownell, 8, holds up her Beads of Courage.

Beads of Courage program expands to pediatric burn patients

The Beads of Courage program, which provides support for children with serious illnesses, has recently expanded to the pediatric burn service at Upstate University Hospital.

Beads of Courage is sponsored by the Maureen’s Hope and Jim and Juli Boeheim foundations and has been available to pediatric patients in a variety of areas at Upstate for many years. The program gives young patients a color-coded glass bead for moments along his or her health journey – a doctor’s visit, hospital stay or treatment. The patients, who range in age from infants to 19 years old, string the beads together, creating a colorful chain that signifies a long, sometimes difficult health journey.

The Upstate Burn Clinic added Child Life Specialist Allison C. Della Penna, BS, CCLS last fall to make the unit more child-friendly. Della Penna has collaborated with inpatient Child Life Specialist Jessica Baker, MS, CCLS who works with pediatric burn patients during their admissions to allow for more continuity of the Beads of Courage program.

“Beads of Courage really helps me give kids a tangible way of telling their story,” Della Penna said. “A lot of times kids are verbally able to tell their story but allowing them to have this visual representation is a great way for kids to be able to tell their story to peers, to family members and to providers. It’s been an amazing experience for me to recognize and recall all of the things that these kids go through and how I can help them in their journey.”

The program is offered to all inpatient and outpatient pediatric burn patients, Della Penna said. She’s also been working to get existing patients caught up with beads for previous treatments and appointments by looking back in their medical records, she said. Thirty patients have received Beads of Courage since the program started in the burn service in January. Della Penna estimates that she’s already given out thousands of the colorful trinkets.

The handmade glass beads are different shapes, sizes and colors for each treatment or milestone and they vary by a child’s diagnosis, meaning a bead is one color for a chemotherapy treatment and another for a burn injury dressing change. The pediatric patients she works with will often bring their strung beads to new appointments and are eager to talk about each one. Overnight hospital stays and surgeries are always talked about first, she said.

Beads of Courage also provides special beads for family milestones and personal accomplishments. Those beads not only commemorate big moments but they provide motivation to keep going, Della Penna said.

“Their special accomplishments are what they like to talk about – why they have each bead and it doesn’t even have to be specific to their injury,” she said. “I had one patient who was finally able to ride a bike after their injury, which was such a great accomplishment in their journey of movement.”

Burn Program Manager Tamara Roberts, MSN, RN, said introducing the Beads of Courage program to the burn service creates a much-needed bridge between the inpatient and outpatient experience.

“This is such a great addition. Allison has already brought so many great things to the unit,” Roberts said. “I can see through the pictures of the kids how proud they are of the beads that they’ve earned because it’s such a big journey for them. A burn injury is a lifelong injury that people have to deal with forever. These beads are something they can carry with them for a lifetime.”

Caption: Pediatric burn patient Olivia Brownell, 8, holds up her Beads of Courage.