UW-Madison OT Program - 2011 OT Matters - Ruth Benedict's Cerebral Palsy Research

OT student doing research with child
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Ruth Benedict Leads Assessment Study on Innovative Intervention for Children with Cerebral Palsy

Five-year-old Lauren's cerebral palsy used to make eating meals an ordeal, going to bed a challenge, and crawling an impossibility.

But her new baclofen pump implant helps loosen and tone her muscles, making daily activities much easier to manage for Lauren and her family.

"She can crawl upstairs now, allowing my 71-year-old mother ... to be able to safely get Lauren upstairs and to bed," said Lauren's mother, Sandy Tierney. "She sleeps better, naps less and is happier now that her body is more predictable and responds to her."

Lauren and her parents have been participating in Professor Ruth Benedict's ongoing study to measure the functional effects of the baclofen pump for children with cerebral palsy (CP).

Compared to injections and pills that wore off or caused fatigue, the pump's slow and measured release of baclofen - a drug derived from a mammalian neurotransmitter acid - gives Lauren the consistent muscle tone she needs to go about her life more comfortably and quickly.

"I don't have to take the pill any more, and then I can have breakfast quicker," Lauren said, as relayed by her mother. "It helps me get up the stairs more easily, and I'm not so tight."

Benedict is studying how the pump and subsequent therapies affect functioning, care, health, well-being and participation in home and community life for clients with CP as well as their caregivers.

Health care providers are putting a lot of resources into supporting children who receive these interventions, so knowing that it is effective is imperative, Benedict said.

"Certainly there's enough evidence out there right now to show that it is effective enough in terms of reducing (muscle) tone in these children, but there's not enough evidence out there showing what the implications are for care giving, and for the child's function," she said. "That's what we're hoping to show - that not only is there a physiological change in the child, but that the physiological change has implications for the child's function and for the caregivers ability to care for the child."

Benedict's research team has already collected pre-intervention data on 20 client-caregiver pairs, six-month post-surgery data on more than half the pairs, and two-year data on five pairs.

Participants fill out initial questionnaires about their health, activities and spasticity management and other effects of cerebral palsy on their daily activities. They meet with the research team a total of four times, once before and three times after the surgery. Team members interview participants about their goals and concerns regarding the treatment and record them as they perform typical activities while wearing equipment that monitors their movements and energy exertion.

"Thus far, the general perception is that there does seem to be a change, at least in some areas of care giving, but we'll have to wait until we see and analyze all the data to know for sure," she said.

CP is one of the most prevalent childhood disabilities, and an expensive one - a 2003 CDC report estimates that the cost over one person's lifetime can be more than $900,000.

Benedict hopes to show that the functional benefits of the pump, including care giver time and energy, outweigh its side effects and financial cost, she said.

Benedict expects to prove what Tierney hopes for - that the pump will allow Lauren and other children with CP to get a much better return from life-long therapy with occupational therapists and other health care professionals.

"I strongly believe that if we want access to these knowledgeable and highly skilled professionals, we need to help in the information learning and training process," Tierney said. "Participating in research is for our benefit as well as others."

MSOT Candidate Finds Inspiration and Professional Development in Benedict's Research Project

OT graduate student Andrea Olson jumped at the chance to work as Benedict's primary project assistant, for the research, mentoring and leadership experience.

Olson "makes the project run" by recruiting and coordinating all 20 participant families and running the protocols. She enjoys working with kids and forming relationships with the families in the study, she said.

Olson visited the study participants in the hospital the day after each child's surgery for short follow-up interviews. She would spend anywhere from five minutes to a couple of hours with them, mostly getting to know them, listening to their experiences and learning from them.

"They were really willing to share their stories," Olson said. "It's given me a better perspective as a practitioner and empathy for what they have to deal with day to day."

Olson has also learned how families make do with dwindling resources and how they negotiate a medical system that often doesn't accommodate the spectrum of characteristics of children with cerebral palsy, she said.

As a former preschool teacher with a bachelor's degree in human development and family studies, Olson has always been attracted to working with children in the context of family relationships, she said.

"I wanted to take it a step up," she said, adding that studying OT allowed her to build on that kind of interaction but with different kinds of problem solving and teaching experiences.

"We talk about social history (in school), but this gets at family support - not just what's best for the individual but what's best for the family," Olson said. 

Benedict Finds Motivation In Children's Potential 

Benedict's dedication to children with cerebral palsy goes back to her work in pediatric outpatient clinics after finishing her OT degree.

She served children with complex diagnoses, including many on the higher end of the CP spectrum who needed significant therapy.

"I was struck with how both challenging and delightful the children were to work with," she said, explaining that while they had very involved needs, they were eager to have interaction with people in their lives. "I also felt like sometimes they were more capable than what people really recognized."

In one clinic, Benedict met a girl who was being tube fed but looked like she had the motor skills to be orally fed, she said. Benedict got permission to try and was successful, which validated her hypothesis and influenced her desire to research better caregiving practices and interventions.

Wanting to make a difference for those children and their families motivated Benedict to go back to do her doctoral research in population health, she said.

"My dedication to doing research and the outcomes in particular, came from families asking 'Does OT really make a difference? or 'Do these interventions that the children receive really make a difference?' and not feeling like there was adequate evidence to support and show those families that the things we were doing with their children were making a difference," Benedict said.

Today, she finds motivation and passion for her work in much the same way - by visiting and interacting with children and their parents in the research clinics.

"It was just amazing ... to see a child light up when you begin to interact with them," Benedict said, adding that she also finds inspiration in the parents who devote themselves to caregiving and researching what's best for their child.

"I just stand in awe of that kind of dedication," she said. "The kind of commitment that they have to taking on this incredibly challenging task of having essentially a child that will require support throughout their life."

Benedict's research is funded by the University of Wisconsin Alumni Research Foundation, the Cerebral Palsy International Research Foundation, the Pedal-with-Pete Foundation, and the Virginia Horne Henry Fund for Women's Physical Education.

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