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news News Friday, August 23, 2019 Friday, August 23, 2019 1:26 PM - Friday, August 23, 2019 1:26 PM

Summer camp helps children with cerebral palsy improve functionality

Summer camp helps children with cerebral palsy improve functionality

Four patients, all experiencing a form of bilateral cerebral palsy, recently participated in a three week summer camp at Shriners Hospitals for Children — Portland, and they loved every minute of it! The camp is part of a larger study being led by the Portland Shriners Hospital that involves two additional sites also conducting the study, including Shriners Hospitals for Children — Lexington and Columbia University.

During the camp, led by the clinical research team, children participated in 90 hours of intensive motor learning intervention, based on a program called HABIT-ILE (Hand-Arm-Bilateral Intensive Training – Including the lower extremities). HABIT-ILE was developed in Belgium in 2011, and it has been shown to provide lasting improvements to patients who experience challenges with their upper and lower extremities due to cerebral palsy. This breakthrough program is based on the child building strength and skills through games and play.

Before camp, clinical researchers met with each patient and their families to determine five goals or improvements that they would like to see from the patient. Examples of the goals that were set included things like brushing their hair, making their own lunch or dressing themselves.

In order to accomplish these goals, each child was assigned to two volunteers, called interventionists. The interventionists worked with clinical research, as well as physical and occupational therapy staff, to develop games that build strength and encourage similar movements that are reflective of their goals. For example, pulling a card from a deck of cards is a similar movement to grasping a piece of clothing.

“If you or I were trying to learn something new, we would do it again and again and again,” said Susan Sienko, research specialist at the Portland Shriners Hospital. “This camp is that same concept – the movements are really repetitive in order to help them learn the motor skills and motions needed to help them meet their goals.” Additionally, HABIT-ILE is all done with positive reinforcement. “Phrases like ‘That was amazing, look what you can do now!’ are said a lot,” said Susan.  

Ava, a patient at the Portland Shriners Hospital who participated in the HABIT-ILE camp, became more independent at home after the camp concluded. “After the camp ended, Ava really missed it,” said Ava’s mother, Lauren. “She could’ve attended this camp for a whole year, that’s how fun it was for her. She didn’t realize how hard she was working. It really shows how well they did in combining work with play.”

Shriners Hospitals for Children — Portland will host four separate camps as part of the study that was supported by Shriners Hospitals for Children research funding. While the 2019 summer camp recently concluded, the remaining three camps will occur in the fall and winter of 2019, and again in the summer of 2020. The goal of the camps is to study the difference in outcomes between two types of treatment in order to find the best therapeutic approach:

  • Patients receiving 90 hours of treatment over the course of three weeks (six hours per day, five days a week), which is the model that occurred for the summer 2019 camp
  • Patients receiving 90 hours of treatment over the course of 15 weeks (six hours per day, one day a week), which is more of a distributive model

Before and after each camp, an evaluator who is not involved in the study will assess each patient's skill sets to capture any improvements that were made. Each child will be assessed again after six months to determine if gains were maintained or further gains were made after the conclusion of the camps. Once completed, the studies from camps held at all three sites will be one of the largest randomized studies for HABIT-ILE.

Patient and two staff members at camp