Promoting Participation in Leisure Activities in Schoolaged Children with CP

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Promoting Participation in Leisure Activities in
School-aged Children with CP

• Annette Majnemer PhD, OT
• McGill University
• Montreal Childrens Hospital-MUHC

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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

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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

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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

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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

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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) 155-169, 2008.
• Determinants include
• Age, gender, socioeconomic status
• Activity limitations
• Motivation
• Family coping, preferences
• Environmental resources and supports

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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

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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?
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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

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Study Design

• Consecutive series of children with CP
• Historical cohort
• Letter sent to parents describing study
• For children between 6-12 years of age (2003-06)
• Following consent, appointment made for testing
  at the Childhood Disability Research lab, MCH

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Blinded Evaluations

• Occupational therapist and/or physical therapist
• Psychologist
• Neurologist

• Parents (and children, when feasible) completed
• Self-report questionnaires

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Outcome Measure

• Childrens 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

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CAPE scoring

• Diversity
• Number of activities
• Intensity
• Frequency of participation
• Enjoyment

• 5 domains
• Recreational
• Social
• Active-physical
• Skill-based
• Self-improvement

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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

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Results
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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 (6.1-12.9 years)

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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

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Leisure Participation

• Enjoyment levels similar to peers
• Most popular activities (gt50)
• 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

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Leisure Participation

• Least popular activities (lt6)
• 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

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Predictors of Participation Intensity (how often)

• Recreation
• (r2 0.18, p.006)
• Behavior problems (conduct)
• Mastery motivation
• Active physical
• (r2 0.42, plt.0001)
• Motor function
• Etiology
• Skill-based
• (r2 0.09, p.015)
• Rehabilitation services

• Social
• (r2 0.33 plt.0001)
• VABS adaptive behavior
• Mastery pleasure
• Self-improvement
• (r2 0.44, plt.0001)
• Older children
• Communication
• Parental stress (child) -

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Predictors of Participation Diversity (how many)

• Recreation
• (r2 0.33, p.0008)
• Behavior problems (conduct)
• Mastery motivation
• VABS Daily living skills
• Parental stress
• Active physical
• (r2 0.23, plt.0001)
• Motor function
• Skill-based
• (r2 0.10, p.014)
• Rehabilitation services

• Social (r2 0.36, plt.0001)
• IQ
• Mastery pleasure
• Self-improvement
• (r2 0.40, plt.0001)
• Older children
• Communication
• Motor function

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Predictors of Participation Enjoyment (how much
fun)

• Recreation
• (r2 0.25, p.006)
• IQ -
• Behavior problems (peers)
• Parental stress (child) -
• Active physical
• (r2 0.35, plt.001)
• Parental stress (child) -
• Rehabilitation services
• Skill-based
• (r2 0.29, plt.001)
• Behavior problems (hyperactive) -
• Gender

• Social
• (r2 0.16 p.015)
• Behavior problems (peers)
• Parental stress (child) -
• Self-improvement
• (r2 0.38, plt.001)
• Negative react to failure -
• Parental stress (child) -
• Gender
• Age at assessment -

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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)

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Leisure Activity Preferences

• Using the Preferences for Activities of Children
  (PAC)

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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

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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

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Results

• Social and recreational activities were most
  preferred
• Informalgtformal
• Self-improvement least preferred

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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 (gt90)
  but didnt commonly do
• Individual physical activities, games/puzzles,
  dancing, shopping, movies/outings, going to
  someones house
• Few preferred (lt10)
• Track and field, paid job, art lessons

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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 (lt.5) suggest that
  preferences are not strongly associated with
  involvement

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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

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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

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Next Steps

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

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QUALA StudyQuality of Life And Leisure in
Adolescents

• Determinants of quality of life and participation
  in adolescents with cerebral palsy

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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

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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

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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

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Special thanks toNicholas Hall, Research
CoordinatorOTs Rena Birnbaum, Cynthia Perlman,
Amy BrownsteinPsychologists Lisa Steinbach,
Nancy Marget, Mafalda Porporino, Terry Viola,
Chantal MartelStatistician Gevorg
ChilingaryanParents and children who
participated in this studyStudy funded by the
Cerebral Palsy International Research Foundation
(US)
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Childhood Disability LINKLinking Information and
New Knowledgewww.childhooddisability.ca