Promoting Participation in Leisure Activities in School-aged Children with CP Annette Majnemer PhD, OT McGill University Montreal Children’s Hospital-MUHC
Apr 01, 2015
Promoting Participation in Leisure Activities in School-aged Children with CP
Annette Majnemer PhD, OTMcGill University
Montreal Children’s Hospital-MUHC
Team of investigators
Rena Birnbaum MSc, OTGevorg Chilingaryan DMD MPHNathalie Chokron BSc, OTMary Law PhD, OTChantal Poulin MDPeter Rosenbaum MD CMMichael Shevell MD CMDenise 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): 155-169, 2008.
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: (2003-06)
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 (6.1-
12.9 years)
CAPE Mean Scores Informal
Intensity: 3.30.8 Diversity: 23.45.0 Enjoyment: 4.10.5
Formal Intensity: 1.20.7 Diversity: 3.72.0 Enjoyment: 4.10.9
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 (r2= 0.18, p=.006)
Behavior problems (conduct)
Mastery motivation Active physical (r2= 0.42, p<.0001)
Motor function Etiology
Skill-based (r2= 0.09, p=.015)
Rehabilitation services
Social (r2= 0.33 p<.0001)
VABS adaptive behavior Mastery pleasure
Self-improvement (r2= 0.44, p<.0001)
Older children Communication Parental stress (child) -
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, p<.0001)
Motor function
Skill-based (r2= 0.10, p=.014)
Rehabilitation services
Social (r2= 0.36, p<.0001) IQ Mastery pleasure
Self-improvement (r2= 0.40, p<.0001)
Older children Communication Motor function
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, p<.001)
Parental stress (child) - Rehabilitation services
Skill-based (r2= 0.29, p<.001)
Behavior problems (hyperactive) - Gender
Social (r2= 0.16 p=.015)
Behavior problems (peers) Parental stress (child) -
Self-improvement (r2= 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
Special thanks to:
Nicholas Hall, Research CoordinatorNicholas Hall, Research CoordinatorOTs: Rena Birnbaum, Cynthia Perlman, Amy BrownsteinOTs: Rena Birnbaum, Cynthia Perlman, Amy Brownstein
Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola, Chantal MartelTerry Viola, Chantal Martel
Statistician: Gevorg ChilingaryanStatistician: Gevorg ChilingaryanParents and children who participatedParents and children who participated
in this study in this study
Study funded by the Cerebral Palsy International Research Foundation (US)
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www.childhooddisability.ca