No one, in all the years of therapy for his cerebral palsy, had ever asked 12-year-old Jonathan Bamberger this one, simple question:

What do you like to do?

No therapist had asked his mother, Terry, about her son’s interests, either.

That changed in 2009, when a physical therapist working with a Drexel researcher named Tracy Stoner ’08 did just that as part of a Drexel-led case study on a novel, five-step model of intervention for children affected by the neurological brain disorder or injury. Called participation-based therapy, the model is designed to help children with cerebral palsy engage more in their community life.

According to Bamberger, those six words — integral to participation-based therapy — created “a life-altering experience” for her and her son.

“That was very powerful,” says Lisa Chiarello, a professor of physical therapy and rehabilitation sciences at Drexel who is a lead researcher in formulating the new model. “It’s not the therapist’s goal. It’s the child’s goal.”

The model significantly shifts the paradigm of physical therapy’s role — from improving impairments to fostering participation and relationships.

“I’ve always been interested in children’s social interactions with peers, which is unique for a physical therapist,” says Chiarello, who has been a key investigator over the last decade in three major studies (see sidebar, “A Decade of Data”) of children with cerebral palsy that focus on the child’s participation in activities that build social relationships. “Physical therapy is about physical functioning. But you often are using physical functioning in these social interactions to have relationships with others.”

A Decade of Data

Over the course of three groundbreaking, multi-site and multi-year studies of children with cerebral palsy, Lisa Chiarello and Bob Palisano have amassed an extensive body of research detailing the challenges and importance of participation-based therapy.

CAPS

The Children’s Activity and Participation Study interviewed 600 children ages 3 to 21 between 2006 and 2008. The children were asked about their involvement in 55 activities, such as playing with puzzles, doing team sports, or going to concerts; how often they partook; and how much they enjoyed the activities.
CAPS produced more than a dozen publications and concluded that a child’s adaptive behavior — that is, his or her motivation, perseverance and ability to interact with the demands of a particular situation — was a crucial factor for participation.
The study was funded with $850,000 from Shriners Clinical Outcomes Program.

Move and PLAY

The Movement and Participation in Life Activities for Young Children with Cerebral Palsy study followed 430 preschoolers ages 18–60 months over a year, collecting data at three points on the factors that support motor function, self-care, play and participation in daily activities. According to Chiarello, the 2006–09 study developed several important measurement tools, including child engagement in daily life and ease of caregiving for children.
One finding was that a child’s ability to adapt to a situation has the biggest influence on participation and playfulness. This suggests that rehab services should be conducted in the context of real-world experiences, such as going to the playground or visiting a library for story time, Chiarello says.
Move and PLAY was funded with $450,000 from the National Institute of Disability and Rehabilitation Research and $925,000 from the Canadian Institutes of Health Research (CIHR).

On Track

The team’s latest study, which began in 2012 and continues into 2017, is monitoring about 720 children with cerebral palsy ages 18 months to 11 years over five check-ins. It’s a longitudinal, labor-intensive undertaking that is expected to yield insight into developmental changes over time.
A key objective of the current study is to produce baseline charts of participation levels at different ages and at different degrees of motor impairment.
On Track is funded with $1.9 million from the Patient-Centered Outcomes Research Institute in Washington, D.C., and $1 million from CIHR.

Going forward, Chiarello, along with Drexel co-investigator Bob Palisano and other researchers, seeks to further refine and test how well the model supports a child’s interaction with parents, siblings and friends.

“To me, this level is the ultimate goal,” Chiarello says, “because participating in life really gives their life meaning.”

They hope that the data they accumulate can one day be used to create first-of-their-kind longitudinal developmental curves and therapy recommendations for the 1 in 323 children in the United States living with the disorder, similar to a pediatrician’s growth chart or a What to Expect resource.  

Such a tool is long overdue in the field of pediatrics. While parents of developmentally typical children have access to charts and data alerting them to typical milestones — is your child smiling by 6 weeks? is she walking at 12 months? — no such benchmarks exist for children with cerebral palsy to help caregivers gauge how they are progressing, particularly recreationally and socially.

“Resources exist for gross motor skills, but life is so much more than gross motor skills,” says Stoner, who is a Philadelphia regional coordinator for a current study with Chiarello. “As clinicians, we have never had anything like this.”     
 

Meet and Greet

It has long been known — and Chiarello’s research confirms — that children with cerebral palsy participate less and in fewer activities than other children. Participation-focused therapy uses a five-step process to address that challenge.

Participation-based therapists begin by establishing rapport directly with the family and the child, usually in the family’s home or community setting. Together, they come up with goals that are important to the child and family; for example, a child may want to go to the playground. They then develop real-life strategies to accomplish the goal. That might mean that a therapist accompanies a child to the playground to see firsthand her obstacles, so the two can brainstorm and implement solutions. The therapist then evaluates outcomes with the family. 

“We need to support the child’s adaptive behavior,” Chiarello says, “and we also need to support the family in expecting from the child the best [he or she] can do. … Participation is multi-dimensional, the physical doing, the social belonging, and the being, which is the fulfillment, learning and enjoyment a person gets from participating. A therapist needs to scaffold all of that as they’re trying to foster a child’s participation.”

Chiarello and her team are leaders in this field of physical therapy, says Joe Schreiber, president of the pediatrics section of the American Physical Therapy Association and a professor of physical therapy at Chatham University in Pittsburgh.

“She’s been an incredible advocate,” says Schreiber.

New participation measurement tools that came out of the team’s studies have proven useful to clinicians, he notes, and therapy focused on participation has made the profession more effective.

“It’s a really important mental switch for the profession,” Schreiber says.

Two of the team’s studies, Move and PLAY and On Track, also broke ground by involving parents as research collaborators, who offer lived-experience perspectives and play significant roles in the study.

“It’s not the norm,” Chiarello says. “We envision it becoming much more so. People affected by research should be involved in research, and not just as participants.”

In the Move and PLAY study, two parents started as consultants, offering feedback on study recruitment literature and such, but over time moved into larger roles that continue with On Track. An additional five parents joined the team, and Palisano runs monthly teleconference meetings between them and investigators.

“Increasingly, our voices were more and more valued,” says Tina Hjorngaard of Toronto, whose 17-year-old daughter has cerebral palsy. The parents have helped design materials and translate results into formats useful to families. They’ve also presented at conferences alongside academics, and written articles for lay publications.

Hjorngaard says her only regret is that participation-based therapy was not common when her daughter was younger. “She felt really isolated,” Hjorngaard says.

Barbara Sieck Taylor, a parent collaborator from Pittsburgh whose 24-year-old son has cerebral palsy, says the relationship works in large part because Chiarello is the “queen of listening.”

“Parents can help by reminding people who are deeply embedded in data and models that those abstractions represent individuals,” says Taylor.

Chiarello’s research thus far provides the foundation for a new, as-yet-unfunded pilot study to test participation-based therapy. 

Such studies are often considered “messier,” because of the focus on lived experiences and numerous variables that can affect outcomes. “But in the end, you have much richer and much more data,” says Annette Majnemer, director and associate dean of the School of Physical and Occupational Therapy at McGill University in Montreal.

Majnemer, who co-edits the journal Physical and Occupational Therapy in Pediatrics and is familiar with Chiarello’s work, says that the real strength of her studies is the use of very large samples, which allow the researchers to draw statistically significant conclusions.

“Sometimes we really get caught up in these randomized control trials,” says Audrey Wood ’95, who serves as coordinator of the Move and PLAY study for Greater Philadelphia and is a physical therapist at Children’s Hospital of Philadelphia. “These qualitative studies are important, too. They really speak to everyday life.”
 

Happy Together

For Jonathan Bamberger, participation-based therapy was like nothing he’d ever experienced before.

When the Maryland pre-teen joined the study, he needed help with transfers from his motorized wheelchair, getting around and self-care. At times, his speech was hard to understand, and he had a visual impairment.

Previously, his physical therapy had always focused simply on stretches and transfers. It did nothing to give him the sense of belonging that comes through joining after-school activities alongside his peers.

Once he joined the case study, he met with Stoner, who talked with him and his mother about his interests. She probed his likes and dislikes, his routines and abilities. She took notes about his goals and his family’s goals.

At first, his mother kept saying: “We want him to transfer better. We want him to sit better.”

Stoner was persistent. “I kept asking, ‘Why do you want to transfer better? Why do you want to sit better?’”

Stoner and the Bambergers brainstormed four real-life experiences that Jonathan could join: Boy Scouts, a baseball challenger league, chorus and a church youth group. The trio decided to pursue the youth group, where Jonathan hoped to meet girls and make friends.

“I thought it was a godsend,” Bamberger says. “Those are the things that are important to parents and the kids.”

Stoner, in her role as assessor for this case study, suggested therapy that worked toward specific, youth-group–related outcomes. She knew Jonathan would need to learn to speak louder, to express his needs, to explain to others how to provide physical assistance and to practice social interactions.

“Those were really useful life skills he wanted to learn,” says Stoner. 
       
Bamberger recalls her initial reaction was surprise. “Wow, this is what you guys consider therapy?” she asked.

To develop strategies and implement them, Stoner actually accompanied Jonathan to several of the 7 p.m. youth group meetings, smoothing the way for him. She worked with the group director on how to include Jonathan in activities and how to help with transfers, with eating the customary pizza dinner and with emergencies, such as choking.

At the first meeting, Jonathan was bombarded with questions from the group in their zeal to include him. Stoner says she taught the kids that Jonathan needs a little extra time to process and answer a question.

“You need to see it in action to say this is not working,” she says. “It was being able to step out of that clinic environment … and work with the people interacting with him.”

Soon, Jonathan was initiating conversations with the adults and other kids. As the weeks unfolded, he joined the singing, played a part in a skit and talked with three girls. By the end of the therapy, Jonathan was thrilled with the experience, Bamberger says, and she rated her overall satisfaction with her son’s participation a top score of 10.

“It gave me a lot of hope that there are ways to include children with disabilities,” she says. Her son, now 18, still maintains friendships he began in youth group.

For Stoner, the participation-based therapy was eye opening. “I saw the progress in a way I never did in clinic,” she says. “It makes physical therapists think outside the box. In the end, it’s how happy they are in life. What does it matter if I teach them to sit better if they can’t go to the mall and hang out with their friends?”

Exactly, says Chiarello.