Children’s Assessment of Participation and Enjoyment (CAPE) Article Summary
Article Title: Leisure participation–preference congruence of children with cerebral palsy: a Children’s Assessment of Participation and Enjoyment International Network descriptive study
Authors: Christine Imms, Gillian King, Annette Majnemer, Lisa Avery, Lisa Chiarello, Robert Palisano, Margo Orlin, Mary Law
Citation: Imms C, King G, Majnemer A, et al. Leisure participation-preference congruence of children with cerebral palsy: a children’s assessment of participation and enjoyment international network descriptive study. Developmental medicine and child neurology. 2017;59(4):380-387. doi:10.1111/dmcn.13302
Purpose: Using the Children’s Assessment of Participation and Enjoyment (CAPE) Questionnaire and the Preferences for Activity of Children (PAC) Questionnaire, data was collected to identify ‘participation-preference congruence’ in children with CP. Participation-preference congruence can be broken down into two trains of thought: (1) Are kids enrolled in activities they want to actually be in or is there an activity they wish they were in instead and (2) if they are already participating in an activity, are they actually enjoying themselves and want to be there. The purpose of the article was to analyze the completed CAPE/PAC questionnaires and identify the following: (1) the amount of time children with CP spend doing activities they enjoy, (2) if children with CP enjoy what they currently engage in during their leisure time, and (3) possible culture and/or community differences between three specific regions.
Study Population: The population studied were children (male = 148, female = 88) ages 10 to 13 years old living with Cerebral Palsy. Demographics for this population included Victoria, Australia (n=110), Ontario, Canada (n=80), and Quebec, Canada (n=46). The children were also classed using the Gross Motor Function Classification System (GMFCS). 99 children were classed as level I, 89 classed into level II/III, and 48 classed into level IV/V.
Note: The Gross Motor Function Classification System is used to describe gross motor function in children with cerebral palsy. Key areas of assessment are the child’s self-initiated movement with sitting, walking, and wheeled mobility. There are 5 total levels with Level I being the most independent mobility and Level V being more dependent mobility. Levels identify differences in functional abilities, assistive device utilization (hand-held mobility devices or wheeled/power mobility), and quality of movement (McMaster University, 2019)
Methods: Researchers performed a secondary data analysis on data collected from three studies where subjects completed the Children’s Assessment of Participation and Enjoyment (CAPE) Questionnaire and the Preferences for Activity of Children (PAC) Questionnaire. The combined data provided descriptive information on 236 children living with Cerebral Palsy. Researchers also utilized data on family income and parent education level to assess any correlations with children’s participation-preference congruence.
Outcome Measures: The outcome measures utilized were both the Children’s Assessment of Participation and Enjoyment (CAPE) Questionnaire and the Preferences for Activity of Children (PAC) Questionnaire. Both questionnaires assess levels of activity participation in children 6 to 20 years of age over a period of 4 months. There is a total of 55 questions on each questionnaire. These questions serve to identify various activities children participate in (diversity), the frequency of each activity, the location of each activity, to whom the child participates with, and the amount of enjoyment the child feels while engaging in participation. In the present study, only scores collected on the diversity of activities were utilized to calculate the participation-preference congruence. The activity types were broken down into five components: (1) self-improvement, (2) skills-based, (3) social, (4) physical, and (5) recreational.
Intervention: This paper did not include an intervention section as it is a descriptive data analysis from three previous studies.
Results: Results identified that 50% of subjects stated that they were not engaging in active physical, skill-based, and social activities that they wanted to be involved with. 25% of subjects reported that the self-improvement activities they were involved in were not their preferred options. Few (0-12%) of subjects were involved in recreational, active physical, social, and skill-based activities that they did not wish to be a part of. 58% of subjects reported involvement in self-improvement activities that were not preferred.
The most significant predictor for subjects reporting that they were not involved in an activity they wished to be a part of was the Gross Motor Function Classification System level. Those at GMFCS levels IV/V reported to not participating in activities they wanted to significantly more than those in GMFCS level I.
The most significant predictor for social participation-preference congruence was GMFCS level and family income. Data demonstrated that children in GMFCS level IV/V in families with low income (<$15,000) participated in 17.2% less social activities that they preferred when compared to families with a higher income.
GMFCS level also proved significant when assessing participation-preference congruence in skill-based activities. Those in GMFCS levels IV/V consistently reported not being involved in an activity they wanted to be doing.
Conclusion: In conclusion, the data demonstrates that most children across all three regions are satisfied with the activity they are involved with outside of school (what they currently participate in is satisfactory). However, while the children reported being satisfied with their current participation, a significant number of subjects reported that they were not participating in an activity they wished they could be. The biggest discrepancy in participation-preference congruence was in those children with severe mobility deficits (GMFCS IV/V). The children reported that their current participation is not what they prefer to do. These findings can be contributed to the impairments of body, structure, and function limiting participation in children with CP. The finding of no major regional differences represents a larger public health issue relating to access to adaptive activities. There needs to be a variety of activity across a wide range of experiences that can accommodate children of all abilities. Providing more exposure and opportunity to children of all abilities can assist in enhancing a child’s self-efficacy and self-esteem. By breaking barriers to participation, more children will be able to participate in preferred activities thus enhancing their livelihood and sense of competency.
Major Strengths/Limitation: One limitation of the study is the language and verbiage utilized. It applied multiple double-negative phrases which made it a challenge to read. Secondly, the study only studied children ages 10-13. This proves to be a huge limitation as human development varies drastically during the younger periods of life. A strength of the paper is the conclusion suggesting a global shortage of access to different activities. This paper can be utilized as a reference when working to enhance accessible community resources.
Citation:
Imms C, King G, Majnemer A, et al. Leisure participation-preference congruence of children with cerebral palsy: a children’s assessment of participation and enjoyment international network descriptive study. Developmental medicine and child neurology. 2017;59(4):380-387. doi:10.1111/dmcn.13302
McMaster University. Gross Motor Function Classification System – Expanded & Revised. CanChild. 2019. https://canchild.ca/en/resources/42-gross-motor-function-classification-system-expanded-revised-gmfcs-e-r
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