Promoting Participation in Leisure Activities in School-aged Children with CP Annette Majnemer PhD, OT McGill University Montreal Children’s Hospital-MUHC

Team of investigators Rena Birnbaum MSc, OT Gevorg Chilingaryan DMD MPH Nathalie Chokron BSc, OT Mary Law PhD, OT Chantal Poulin MD Peter Rosenbaum MD CM Michael Shevell MD CM Denise Keiko Shikako-Thomas OT, PhD candidate

Children with CP May have difficulties in their ability to move, problem solve, socialize and communicate Associated with activity limitations At risk for lower participation in social and recreational activities

Leisure Participation Participation Taking part or being involved in everyday life activities and roles Leisure activities Those activities that an individual chooses to participate in during their spare time because they find them enjoyable Participation in leisure activities Important in fostering friendships, enhancing skill competencies, developing personal interests and identity

Participation in Children with CP  Few studies on children with disabilities Lower levels of participation Lack variety More passive, home-based activities Preliminary evidence suggests that contextual (personal, environmental) factors may be important predictors

Systematic Review Shikako-Thomas, K. et al, Determinants of participation in leisure activities in children and youth with cerebral palsy: Systematic review. Physical & Occupational Therapy in Pediatrics, 28(2): , Determinants include: Age, gender, socioeconomic status Activity limitations Motivation Family coping, preferences Environmental resources and supports

Rationale Paucity of information on participation in school-age children with CP Broader understanding of involvement in leisure activities needed Are children participating in activities of their choosing? Identification of key determinants for development of health promotion initiatives Focus beyond body functions as predictor variables

To what extent do children with CP participate in leisure and recreational activities? What factors are most important in ensuring a high level of participation and enjoyment?

Primary Study Objectives Describe the frequency, diversity and level of enjoyment of leisure activities in children of school-age with CP Identify factors that predict participation Biomedical Body function and activity Personal factors Environmental factors  …as part of study on participation and quality of life of children with CP  Majnemer et al, Journal of Pediatrics, 2007  Majnemer et al, Quality of Life Research, 2008  Shevell et al, DMCN, 2008

Study Design Consecutive series of children with CP Historical cohort Letter sent to parents describing study For children between 6-12 years of age: ( ) Following consent, appointment made for testing at the Childhood Disability Research lab, MCH

Blinded Evaluations Occupational therapist and/or physical therapist Psychologist Neurologist Parents (and children, when feasible) completed: Self-report questionnaires

Outcome Measure Children’s Assessment of Participation and Enjoyment (CAPE)  Forward/back translated into french Involvement in voluntary leisure activities outside of school Formal (structured, preplanned) and informal (spontaneous) activities Administered to those children who could actively participate in completing the measure

CAPE scoring Diversity: Number of activities Intensity: Frequency of participation Enjoyment 5 domains: Recreational Social Active-physical Skill-based Self-improvement

Determinants Biomedical factors: Type of CP, history of neonatal difficulties, etiology Developmental & functional status: Leiter Intelligence Test, Strengths & Difficulties Questionnaire, Gross Motor Function Measure, Vineland Adaptive Behavior Scale Personal factors: Gender, SES, age Motivation- Dimensions of Mastery Questionnaire Environmental factors: Family functioning- Impact on Family Scale, Parenting Stress Index Current rehabilitation services Segregated vs. integrated schooling

Results

Performance on the CAPE 67/95 children completed the CAPE 59% level I, 18% level III-V 66% regular school 76% receiving rehabilitation services Mean age: 9 years 7 months ( years)

CAPE Mean Scores Informal Intensity: 3.30.8 Diversity: 23.45.0 Enjoyment: 4.10.5 Formal Intensity: 1.20.7 Diversity: 3.72.0 Enjoyment: 4.10.9

Leisure Participation: Enjoyment levels similar to peers Most popular activities (>50%): Recreational: crafts/drawing/coloring; computer/video games; pets; pretend play; toys; walking/hiking Social: talking on the phone; hanging out with friends; listening to music Self-improvement: reading, doing a chore; homework Skill-based: none Active-physical: none

Leisure Participation: Least popular activities (<6%): Martial arts, art lessons, musical instrument, paid job Limited involvement in community-based activities: 76% not part of community groups 85% no volunteer work 87% not part of school clubs

Predictors of Participation Intensity (how often) Recreation ( r 2 = 0.18, p=.006) Behavior problems (conduct) Mastery motivation Active physical ( r 2 = 0.42, p<.0001) Motor function Etiology Skill-based ( r 2 = 0.09, p=.015) Rehabilitation services Social ( r 2 = 0.33 p<.0001) VABS adaptive behavior Mastery pleasure Self-improvement ( r 2 = 0.44, p<.0001) Older children Communication Parental stress (child) -

Predictors of Participation Diversity (how many) Recreation ( r 2 = 0.33, p=.0008) Behavior problems (conduct) Mastery motivation VABS Daily living skills Parental stress – Active physical ( r 2 = 0.23, p<.0001) Motor function Skill-based ( r 2 = 0.10, p=.014) Rehabilitation services Social ( r 2 = 0.36, p<.0001) IQ Mastery pleasure Self-improvement ( r 2 = 0.40, p<.0001) Older children Communication Motor function

Predictors of Participation Enjoyment (how much fun) Recreation ( r 2 = 0.25, p=.006) IQ - Behavior problems (peers) Parental stress (child) - Active physical ( r 2 = 0.35, p<.001) Parental stress (child) - Rehabilitation services Skill-based ( r 2 = 0.29, p<.001) Behavior problems (hyperactive) - Gender Social ( r 2 = 0.16 p=.015) Behavior problems (peers) Parental stress (child) - Self-improvement ( r 2 = 0.38, p<.001) Negative react to failure - Parental stress (child) - Gender Age at assessment -

Strategies for Intervention Parental stress and coping needs to addressed Rehabilitation programs to promote leisure skills for children with mild motor impairment Motivation Identify and facilitate motivating leisure activities Address fear of failure, self-concept, confidence and self-efficacy Interventions to decrease behavior problems (hyperactivity, peer relationships)

Leisure Activity Preferences: Using the Preferences for Activities of Children (PAC)

Preferences Having a choice between alternatives and the opportunity to choose those activities that are most satisfying Influenced by level of persistence, perception of the task, activity limitations, past experiences, environmental barriers

Preferences for Activities of Children (PAC) CAPE (does do) vs. PAC (would like to do): Sort CAPE activities into 3 piles: “I would really like to do” “I would sort of like to do” “I would not like to do at all”

Results Social and recreational activities were most preferred Informal>formal Self-improvement least preferred

CAPE vs. PAC Many of the activities they commonly participated in were the activities they preferred most (e.g. computers, hanging out, crafts, toys) Examples of activities that they preferred (>90%) but didn’t commonly do: Individual physical activities, games/puzzles, dancing, shopping, movies/outings, going to someone’s house Few preferred (<10%) Track and field, paid job, art lessons

CAPE vs. PAC Correlations between CAPE & PAC Moderate for recreational and skill- based activity domains Lower for physical, social and self- improvement domains Modest correlations (<.5) suggest that preferences are not strongly associated with involvement

Factors Associated with Leisure Activity Preferences Younger children preferred active- physical, skill-based and self- improvement activities Social & recreational activities not influenced by age Girls preferred skill-based activities

Factors Associated with Leisure Activity Preferences Children with more severe limitations (and those in special schools) preferred skill-based activities Mastery motivation Persistence with motor tasks  skill-based and active-physical activities Low reaction to failure  social and self-improvement activities

Next Steps… Qualitative study (interviewing adolescents with CP) Majnemer, Shikako-Thomas, Lach, Shevell Participation an important determinant of quality of life

QUALA Study: Quality of Life And Leisure in Adolescents Determinants of quality of life and participation in adolescents with cerebral palsy

Summary of Findings Children with CP are involved in a variety of formal and especially informal activities They experience a high level of enjoyment of leisure and recreational activities

Summary of Findings Involvement in formal activities: May be mediated by family preferences, not by child and environmental factors Involvement in informal activities: Impairments and activity limitations Mastery motivation Family stress, coping Rehabilitation services

Practice Implications Knowledge about leisure participation and its determinants will assist with Establishing meaningful goals with the child and the family Planning effective services and programs Guiding public policy, advocacy

Nicholas Hall, Research Coordinator OTs: Rena Birnbaum, Cynthia Perlman, Amy Brownstein Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola, Chantal Martel Statistician: Gevorg Chilingaryan Parents and children who participated in this study Special thanks to: Nicholas Hall, Research Coordinator OTs: Rena Birnbaum, Cynthia Perlman, Amy Brownstein Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola, Chantal Martel Statistician: Gevorg Chilingaryan Parents and children who participated in this study Study funded by the Cerebral Palsy International Research Foundation (US)

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