1. 2011 OSEP Leadership Mega Conference Collaboration to Achieve Success from Cradle to Career 2.0 “Understanding the Determinants of Motor Abilities, Self Care, and Play for Young Children with Cerebral Palsy” Movement & Participation in Life Activities of Young Children Lisa Chiarello, PT, PhD, PCS, Drexel University Doreen Bartlett, PT, PhD, University of Western Ontario Robert Palisano, PT, ScD, FAPTA, Drexel University Sally Westcott McCoy, PT, PhD, University of Washington Peter Rosenbaum, MD, McMaster University Funded by: National Institute of Disability and Rehabilitation Research (H133G060254) and the Canadian Institutes of Health Research NIDRR Session Program 206NR-S

2. Why was this research conducted? Motor ability, self-care, participation in home & community activities, and playfulness are important outcomes for young children with cerebral palsy. Information on the factors that enhance outcomes is particularly needed because families expend considerable time and resources to meet their children's needs. Understanding the complex inter-relationships among child, family, and service factors is needed to guide clinical decision making. Knowledge of evidence based interventions, supports to families, and community resources is needed to provide services that are most beneficial.

3. What did we do and who participated? Tested a model of child, family, and services hypothesized to help children with cerebral palsy move around, take care of themselves (self-care: feeding, dressing, bathing), participate in activities, and play 4 regions in the United States and 6 provinces in Canada 226 young children with cerebral palsy and their families – Gross Motor Functional Classification System levels III, IV, & V – Ages 18 months to 5 years (average age 38 months) – 127 boys and 99 girls Collected information about many characteristics of the child, family, recreation and rehabilitation services, during 3 sessions over a one-year period

5. What did we learn? Factors Contributing to Motor Abilities Model explained 75% of the variability in children’s motor abilities Lower spasticity, better balance, better quality of movement, and fewer number of limbs and parts of the body involved Fewer range of motion limitations, and higher strength and endurance More effective adaptive behavior Factors Contributing to Self-Care Abilities Model explained 75% of the variability in children’s self-care abilities Higher motor abilities Less spasticity, better balance, better quality of movement, and fewer limbs and parts of the body involved Better health More effective adaptive behavior Stronger attributes of families Parent’s weaker perceptions of family- centeredness of services Higher self-care abilities were related to:Higher motor abilities were related to:

6. Factors Contributing to Frequency of Participation Model explained 40% the variability in children’s frequency of participation More effective adaptive behavior Stronger attributes of families Greater number of recreation programs Higher motor abilities Factors Contributing to Enjoyment from Participation Model explained 38% of the variability in children’s enjoyment from participation More effective adaptive behavior Stronger attributes of families More frequent participation in family and community activities was related to: Greater enjoyment from participation in family and community activities was related to:

7. Factors Contributing to Playfulness Model explained 44% of the variability in children’s playfulness Greater playfulness in children was related to: Higher motor abilities More effective adaptive behavior Parent’s weaker perceptions of family-centeredness of services

8. What are the key messages for families & service providers? Children with limited self-mobility may need a range of supports to enhance gross motor function, self care, participation in activities, and playfulness. Recommended focus of services includes: – Enhancing balance – Preventing secondary impairments – Health promotion – Optimizing gross motor abilities – Promoting adaptive behavior – Supporting family’s role in nurturing their children – Assisting families in accessing and collaborating with recreation programs Adaptive behavior is a key child attribute that contributes to gross motor abilities, self-care, participation, and playfulness. – Encourage and support child’s self-awareness, adaptability, motivation, persistence, problem-solving, and interactions with people in a variety of real-life situations

9. Questions, Comments, Thoughts?? Lisa.chiarello@drexel.edu http://www.canchild.ca/en/ourresearch/moveplay.asp