DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY
ORIGINAL ARTICLE
Determinants of intensity of participation in leisure and recreational activities by children with cerebral palsy ROBERT J PALISANO 1 ,2 | LISA A CHIARELLO 1 , 2 | MARGO ORLIN 1 , 2 | DONNA OEFFINGER 3
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MARCY POLANSKY 4 | JILL MAGGS 1 | ANITA BAGLEY 5 | GEORGE GORTON 6 | AND THE CHILDREN'S ACTIVITY AND PARTICIPATION GROUP 1 Department of Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA, USA. 2 Shriners Hospitals for Children, Philadelphia, PA, USA. 3 Shriners Hospitals for Children, Lexington, KY, USA. 4 School of Public Health, Drexel University, Philadelphia, PA, USA. 5 Shriners Hospitals for Children, Sacramento, CA, USA. 6 Shriners Hospitals for Children, Springfield, MA, USA. Correspondence to Dr Robert J Palisano, Drexel University, Rehabilitation Sciences, Mail Stop 502, 245 N Broad Street, Philadelphia, Pennsylvania, 19102-1192, USA. E-mail:
[email protected]
PUBLICATION DATA
AIM To test a model of child, family, and service determinants of intensity of participation in lei-
Accepted for publication 16th July 2010. Published online 21st October 2010.
METHOD Participants were 288 children with CP, age range 6 to 12 years (mean 9y 8mo, SD 2y),
ABBREVIATIONS
CAPE Children's Assessment of Participation and Enjoyment PODCI Pediatric Outcomes Data Collection Instrument FES Family Environment Scale MPOC Measures of Processes of Care
sure and recreational activities by children with cerebral palsy (CP). and their parents from seven children’s hospitals. The sample comprised 166 (57.6%) males and 122 (42.4%) females, and between 40 (13.9%) and 74 (25.7%) children in each of the five levels of the Gross Motor Function Classification System. Children completed the Children’s Assessment of Participation and Enjoyment by interview. Parents completed the Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Coping Inventory, Measure of Processes of Care, and two questionnaires. Structural equation modeling was used to test the model. RESULTS Fit statistics indicated a good model fit. The model explains 32% of the variance in intensity of participation. Path coefficients (p£0.05) indicate that higher gross motor function, higher enjoyment, more effective adaptive behavior, younger age, and higher family activity orientation are associated with higher intensity of participation. The path between services and participation was not significant. INTERPRETATION Intensity of participation of children with CP is influenced by multiple child and family determinants. Children’s gross motor function and behavior in life situations are important for participation; knowledge of activities the child and family enjoy has implications for opportunities for participation. Professionals are encouraged to address priorities for leisure and recreation identified by children with CP and their families.
Participation (involvement in home, school, and community life1) is of utmost importance to children with cerebral palsy (CP) and their families. Through participation children form friendships, gain knowledge, learn skills, and express creativity.2 Enablement models such as the International Classification of Functioning, Disability, and Health1 have increased awareness of participation as an outcome of health and rehabilitation services. Among individuals with CP, diversity and intensity of participation in leisure and recreation activities is higher in children than young people and those with more gross motor function.3,4 A systematic review identified age, sex, activity limitations, family preferences and cohesion, and environmental resources and supports as factors that might influence participation in leisure activities of children with CP.5 Among children with CP, lower ability to communicate and higher activity level were constraints to participation whereas higher intelligence and gross motor function were 142 DOI: 10.1111/j.1469-8749.2010.03819.x
associated with increased participation.6 King et al.7 tested a model of predictors of participation in leisure and recreation activities in children with varied physical conditions including CP, congenital and traumatic spinal cord injury, traumatic brain injury, amputation, juvenile arthritis, muscular disorders, and orthopedic conditions. Child functional ability, family participation in social and recreational activities, and child preferences had direct effects on participation whereas family cohesion, unsupportive environments, and supportive relationships had indirect effects. The model explained 30% of the variance in intensity of participation in informal activities requiring little or no planning and 18% of the variance in intensity participation in formal activities structured by adults. Knowledge of determinants of participation specific to children with CP would assist families and healthcare professionals to identify resources, services, and supports that enable children to optimize their desired involvement in home, ª The Authors. Journal compilation ª Mac Keith Press 2010
school, and community life. The aim of this prospective cohort study was to test a model of child, family, and service determinants of intensity of participation in leisure and recreational activities by children with CP. The model was tested using structural equation modeling, a confirmatory approach that differs from regression analysis in that both direct and indirect effects of multiple constructs are simultaneously analyzed and models can include latent variables that are not measured directly.8 Structural equation modeling involves (1) specifying the model, (2) testing the reliability of indicators of constructs not measured directly (measurement model), and (3) testing the structural model (measurement model, direct and indirect paths).
SPECIFYING A MODEL OF DETERMINANTS OF PARTICIPATION Our conceptual model of determinants of intensity of participation by children with CP is presented in Figure 1. The model was formulated through an iterative process that involved literature searches, appraisal of theory and research, and discussions among the research team. The model reflects the perspective that participation of children with CP is complex, multidimensional, and influenced by child characteristics, family characteristics, and educational, healthcare, and community services. Child characteristics The constructs gross motor function, physical activity, health, adaptive behavior, enjoyment of participation, speech and communication, and the socio-demographics age and sex are proposed to have a direct effect on participation and an indirect effect through services. An indirect effect is when a third variable (i.e. services) mediates or underlies the observed relationship between a predictor variable (i.e. child characterisFamily
What this paper adds • Intensity of participation of children with cerebral palsy (CP) is influenced by multiple child and family characteristics. • Adaptive behavior is important for participation of children with CP and is influenced by communication and family supports. • Services did not influence participation and warrant further study.
tics) and a dependent variable (i.e. intensity of participation). Children with CP with higher physical ability had fewer activity limitations and participation restrictions than those with lower physical ability.9,10 Adaptive behaviors are used to meet personal needs and interact with the social environment.11 Mastery motivation and adaptive behaviors were predictors of functional abilities of children with disabilities.12 Among children with physical impairments, those with higher adaptive behavior had higher perceptions of scholastic competence, self-worth, and more appropriate behavioral conduct.13 Adaptive behaviors are hypothesized to enable children with CP to participate with family, friends, and in their community.
Family characteristics The constructs family structure and relationships, family activity orientation and the socio-demographics primary caregiver education, and family income are proposed to have a direct effect on participation and an indirect effect through services. The proposed paths reflect the perspective that family members are the most important people in their child’s life. The environment in which a child is nurtured and cared for is characterized by family structure, relationships, and interactions with the community.14 Family participation in social and recreational activities (activity orientation) predicted intensity of participation of children with physical disabilities.7 Supportive family environments and financial resources influence participation by providing children with opportunities and experiences.15,16 Child
Services
Gross motor function
Physical activity
Adaptive behavior
Health Activity orientation
Structure & relationships
Sex Age
Primary caregiver education
Speech & communication
Child characteristics
Enjoyment of participation
Family characteristics Child intensity of participation
Family income
Services
Availability & accessibility
Processes of services Extent services meet
Figure 1: Conceptual model of family, services, and child determinants of intensity of participation in leisure and recreational activities by children with cerebral palsy. Determinants of Participation Robert J Palisano et al. 143
Services The constructs availability and accessibility, extent services meet family needs, and processes of services are proposed to mediate the effect of child and family characteristics on participation. This hypothesis is consistent with family-centered services. Availability, accessibility, coordination and communication, and responsiveness to family information needs are tenets of family-centered services hypothesized to optimize children’s activity and participation.17,18 METHOD Participants Participants were a sample of 288 children with CP, 6 to 12 years of age (mean 9y 8mo, SD 2y), receiving services from six Shriners Hospitals for Children in the USA (Chicago, Illinois; Erie, Pennsylvania; Lexington, Kentucky; northern California (Sacramento); Philadelphia, Pennsylvania; Springfield, Massachusetts) and Kluge Children’s Rehabilitation Center, Charlottesville, Virginia, USA. Children with CP were eligible if they did not have a concomitant illness or health condition that might affect participation. Ethical approval was provided by the institutional review board of each institution. Informed consent was provided by a parent or guardian. Informed assent was provided by children 7 years and older. Participant characteristics are presented in Table I. A minimum sample of 200 participants and five to ten participants per estimated parameter (path coefficients, variances, covariances) are recommended for structural equation modeling.19,20 Our model includes 40 estimated parameters (one parameter per 7.2 participants). Table I: Characteristics of 288 children with cerebral palsy and their families Characteristic Gross motor function classification system level I: walks without restrictions II: walks with limitations III: walks with assistive device IV: limited self-mobility V: severe limitations in posture and self-mobility Sex Male Female Ethnicity Caucasian African-American Hispanic ⁄ Latino Other Primary caregiver’s education High school or lower Associate degree Bachelor degree or higher Missing Family income (US dollars) 200 000 Missing
n
%
74 68 61 45 40
25.7 23.6 21.2 15.6 13.9
166 122
57.6 42.4
228 19 21 20
79.2 6.6 7.3 6.9
144 50 80 14
50.0 17.4 27.7 4.9
29 33 96 70 26 1 33
10.1 11.5 33.3 24.3 9.0 0.3 11.5
144 Developmental Medicine & Child Neurology 2011, 53: 142–149
Measures Children's Assessment of Participation and Enjoyment (CAPE) The CAPE21 is a 55-item measure of leisure and recreational activities done during the past 4 months. It is designed for completion by children 6 years of age and older. The dimensions ‘intensity’ (‘how often’ activities were done, rated on a seven-point scale from 1, ‘1 time in the past 4 months’ to 7, ‘1 time a day or more’) and ‘enjoyment’ (rated on a 5-point scale from 1, ‘not at all’ to 5, ‘love it’) were indicators of intensity of participation and enjoyment of participation. The CAPE has evidence of internal consistency, test–retest reliability, and validity.21,22 Gross Motor Function Classification System (GMFCS) The GMFCS23 is a five-level system for children with CP aged 12 years and younger. It is an indicator of gross motor function. A classification is made based on current gross motor function in daily activities with emphasis on mobility and sitting. The GMFCS has evidence of reliability and validity.22 Before data collection, research assistants achieved a percentage agreement of more than 80% with criterion ratings. Pediatric Outcomes Data Collection Instrument (PODCI) The PODCI10 is a parent report measure of upper extremity function, transfers and mobility, physical function and sports, comfort, happiness and satisfaction, and expectations for treatment for children aged 2 to 18 years. The subscales ‘upper extremity function’ and ‘transfers and mobility’ were indicators of physical activity. Questions on the child’s health, time missed from school, general energy, and pain and discomfort are indicators of child health. Internal consistency and responsiveness of the PODCI have been reported.10 Coping inventory The Coping Inventory24 is a 48-item measure of adaptive behavior of children 3 to 16 years of age. Items are grouped in two categories: self (meeting personal needs) and environment (responding to and interacting with the social environment). Three dimensions are assessed. (1) Productivity, which is the degree to which behaviors are socially responsible (i.e. ability to handle a new situation, responds to rules set by adults, uses language to communicate needs). (2) Active, the degree of task persistence (i.e. asks for help, initiates action to get needs met, stays with task until completed). (3) Flexible, the degree of adaptability (i.e. can be creative and original, changes behavior to achieve goal, demonstrates independence and self-reliance). The full-scale adaptive behavior index was analyzed as the indicator of adaptive behavior. The Coping Inventory has evidence of internal consistency, interrater reliability, and discriminant validity.24 Family Environment Scale (FES) The FES14 is a 90-item self-rated measure of current family functioning in relationships, personal growth, and system maintenance that includes 10 subscales: cohesion, expressiveness, conflict, independence, achievement orientation,
intellectual ⁄ cultural orientation, active ⁄ recreational orientation, moral ⁄ religious emphasis, organization, and control. Each item is presented as a statement that is rated as true or false. The subscales cohesion, organization, and conflict were indicators of family structure and relationships. The subscales intellectual ⁄ cultural orientation and active ⁄ recreational orientation were indicators of family activity orientation. Evidence of internal consistency and test–retest reliability have been reported.14
Measures of Processes of Care (MPOC) The MPOC25 is a self-report measure of parents’ perceptions of the care delivered by healthcare professionals over the past year. The MPOC includes five scales: (1) enabling and partnership; (2) providing general information; (3) providing specific information; (4) coordinated and comprehensive care; and (5) respectful and supportive care. Providing general information and coordinated and comprehensive were indicators of processes of services. Evidence of reliability and validity has been reported.25 The 20-item version of the MPOC25 was used. Parents were instructed to provide an overall rating for each item rather than rate a single organization or healthcare provider. Child ⁄ family questionnaire This questionnaire was developed by the investigators to obtain information on the child and family. Demographic questions were indicators of child’s age, child’s sex, primary caregiver’s education, and family income. Questions on whether the child has a problem in speech or communication and, if there is a problem, the extent the problem affects daily activity were indicators of speech and communication. Services questionnaire This questionnaire was developed by the investigators to obtain information on current services. Responses to six questions were indicators of availability and accessibility of services. The question ‘To what extent are your needs related to supporting your child’s participation in daily activities met by all the services you receive?’ (completely, to a large extent, to a moderate extent, to a small extent, not at all) was the indicator of extent services meet needs. The Child ⁄ Family and Services questionnaires were piloted on 12 families and revisions were made to improve clarity. Procedure Children’s GMFCS levels were determined by research assistants. Parents completed the Coping Inventory, FES, MPOC, PODCI, and the Child ⁄ Family and Services questionnaires. Measures were completed using either a laptop computer that displayed each item and response option or using the paper form for each measure. Most parents completed the measures at the hospital during their child’s outpatient clinic appointment or inpatient hospital stay. If a measure was not completed on-site, parents had the option of completing the measure at home, with return by mail, or by telephone interview.
Children completed the CAPE by structured interview with a research assistant. Guidelines were developed for parental assistance in recalling the number of times an activity was done in the past 4 months. The CAPE was completed by parent proxy for 19% of children in GMFCS levels I to III and 67% of children in levels IV and V. The time needed to complete all measures was 2 to 3 hours.
Data analysis The structural model was tested using the software program AMOS (version 16; SPSS, Chicago, IL, USA). Histograms were plotted for each continuous variable. Skewness and kurtosis of each distribution were acceptable (
