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

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

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

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

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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

  7. 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

  8. 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?

  9. 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

  10. 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

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

  12. 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

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

  14. 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

  15. Results

  16. 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)

  17. 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 CAPE Mean Scores

  18. 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

  19. 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

  20. 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 Intensity (how often)

  21. 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 Diversity (how many)

  22. 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 - Predictors of Participation Enjoyment (how much fun)

  23. 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)

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

  25. 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

  26. 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”

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

  28. 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

  29. 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

  30. 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

  31. 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

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

  33. QUALA Study:Qualityof Life AndLeisureinAdolescents Determinants of quality of life and participation in adolescents with cerebral palsy

  34. 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

  35. 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

  36. 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

  37. Special thanks to:Nicholas 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)

  38. Childhood Disability LINKLinking Information and New Knowledgewww.childhooddisability.ca

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