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The objective of this study was to characterize participation in leisure activities in children with cerebral palsy (CP) and identify determinants of greater involvement. Ninety-five children of school age (9y 7mo [SD 2y 1mo]) with CP were recruited, and participation was evaluated with the Children’s Assessment of Participation and Enjoyment in a subset (67/95; 42 males, 25 females) who could actively participate in completion of the assessment. Most had mild motor dysfunction (Gross Motor Function Classification System: 59% level I, 23% level II, 18% levels III–V) and had a spastic subtype of CP (23 hemiplegia, 17 diplegia, 16 quadriplegia, 11 other). Biomedical, child, family and environmental predictor variables were considered in the analysis. Results demonstrated that these children were actively involved in a wide range of leisure activities and experienced a high level of enjoyment. However, involvement was lower in skill-based and active physical activities as well as community-based activities. Mastery motivation and involvement in rehabilitation services enhanced involvement (intensity and diversity) in particular leisure activities, whereas cognitive and behavioral difficulties, activity limitations, and parental stress were obstacles to participation.
Children with cerebral palsy (CP) experience motor impairments, as well as deficits in other domains, which impact on their ability to move, solve problems, communicate, and socialize. These children may, therefore, also be at risk for less participation in leisure activities. Participation, defined as taking part or being involved in everyday life activities and roles, is a new concept brought to the forefront by the World Health Organization’s International Classification of Functioning, Disability and Health.1 Leisure activities are typically those in which an individual freely chooses to participate during their spare time because they find such activities enjoyable. Participation in leisure activities has emerged as an important ‘outcome’ for children with disabilities, with benefits that include fostering friendships, enhancing skill competencies, and developing personal interests and identity.2
A recent systematic review on participation in leisure activities in children and adolescents with CP has highlighted that very few studies have described this domain in this particular population.3 A Canadian study reported that the pattern of participation did not differ for children with CP in comparison with those with other physical disabilities.4 Another Canadian group found that children with CP exhibited important disruptions in their participation in life situations, particularly in recreational and community-based activities.5 Within the school setting, children with CP demonstrated limitations in their ability to participate in playground and recess activities.6 Evidence suggests that children with a variety of disabilities are involved in fewer activities than their peers, and that these activities tend to be home-based and less physically active, with fewer social engagements.4,7,8
Little evidence exists as to which attributes are facilitators or barriers to involvement in and enjoyment of leisure activities. Identification of these attributes is important in guiding future programs, services, and policies aimed at enhancing participation. Variables that are emerging as possible determinants are the following: child factors, such as severity of disability; personal factors, such as age, sex, and socioeconomic status; and environmental factors that include parents’ education, family preferences, social supports, and environmental resources.3,7,9–12 Further validation of these findings in children with physical disabilities is needed to determine which factors are generic (non-categorical) and which are disability-specific (categorical). Furthermore, exploration of other potentially modifiable attributes such as motivation, specific developmental problems, family function, and access to services is needed.
Traditionally, health care for children with CP focuses on early diagnosis, precise classification, and efforts to diminish motor impairments such as spasticity, muscle weakness, and decreased range of motion, and to manage associated challenging medical comorbidities. Rehabilitation programs have begun shifting focus from minimizing deficits to enhancing functional success and participation in spite of persisting deficits. Targeted interventions aimed at improving quality of life and participation are lacking, in part because of limited data on the factors that influence these outcomes.13 Further evidence is needed to identify attributes of the person and their environment that might potentially be modified to promote participation and community engagement. The primary objective of this study was, therefore, to describe the level of participation in leisure activities in children with CP and to identify factors that are associated with diversity, intensity, and enjoyment of these activities.
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So far, few studies have described participation in children with CP, with a paucity of information on leisure activities.30–32 In the present study, school-aged children with CP reported that they participate in a wide variety of leisure activities, although activities were less diverse and largely home-based, confirming reports on other groups with disabilities.4,7,8 The paucity of community-based activities would suggest that this might be an area to promote and encourage, so as to enhance community engagement. Involvement in active- physical and skill-based activities is diminished compared with other leisure activity types, a phenomenon reported in children with a wide range of physical disabilities.4 It is noteworthy that few children engaged in art lessons or learned to play musical instruments. Assistive technologies and virtual reality interventions may be approaches to consider in this regard. Enjoyment of leisure activities was as high as for typically developing peers,33 and was positively correlated with the number and frequency of involvement, particularly for informal activities.
The identification of determinants of participation is important because this helps guide effective health promotion strategies and policy initiatives that would enable children with CP to participate more fully in society, achieving greater life satisfaction. King et al.9,34 tested a model of determinants of participation in leisure activities for children with physical disabilities. Factors that influenced participation included aspects of the physical, social and attitudinal environment, family function and preferences, and child’s impairments and activity limitations. Using this model and the ICF as a framework, we examined several biomedical, body function and activity, and contextual factors as determinants of participation in leisure activities. A range of predictors were identified, underscoring the complex, multidimensional nature of participation. Overall, the factors associated with the five activity subtypes were similar, whether we were examining intensity (how often) or diversity (how many).
The only biomedical factor identified was knowledge of an underlying proximate cause for motor impairment being associated with diminished involvement in active-physical activities. Clinical evidence of etiology is related to severity of motor disability (GMFM score significantly lower in those with an etiology, p<0.001) and is thus indirectly related to participation. Previous studies have identified seizures as a predictor of participation,31 but, in general, biomedical factors do not seem to exert a strong influence on participation.
We examined several measures of body function and activity as possible determinants. Not surprisingly, motor function was associated with involvement in active physical and self-improvement activities. Others have noted that severity of motor dysfunction is associated with disruption in participation in recreation and other life habits;5,31 however, our study specifies particular leisure activities that are most affected. Lower IQ was associated with less involvement in social activities. Behavior problems were also predictive. Specifically, children with conduct problems were more involved in recreational activities, possibly providing an outlet for them. Functional domains such as communication and daily living skills were also associated with the intensity and diversity of involvement in leisure activities. These observations highlight the value of maximizing functional abilities at school age to enhance participation.
It is increasingly recognized that contextual (personal, environmental) factors exert a powerful influence on participation. Mastery motivation encapsulates the extent to which an individual will persist in solving a problem or mastering a challenging skill, and is associated with self-efficacy.22 We demonstrate that greater motivation was associated with more involvement in recreational activities, with a high level of mastery pleasure observed in children who were more involved in social activities. Child preferences predict participation intensity,9 which may in part relate to intrinsic motivation. Findings suggest that it is critical that children be provided with opportunities to engage in activities of their own choosing that are motivating, to increase participation.33 Older children were more involved in self-improvement activities such as homework or reading, which is developmentally appropriate.
In terms of environmental factors considered, receipt of rehabilitation services was associated with greater attention given to skill-based activities, suggesting that these services may facilitate confidence and competence in skilled tasks. It is also conceivable that clinicians inform families of adapted recreational activities available in the community, thus encouraging involvement. Elevated parental stress was correlated with diminished participation in self-improvement and recreational activities. The design precluded a determination of whether this is cause or effect; indeed, this may be bidirectional. Parents have a vital role in providing opportunities for leisure participation in this age group,33 emphasizing the importance of addressing family adaptation and coping to enhance the child’s well-being. We did not confirm the finding that family income was a determinant.4
A variety of factors were identified as determinants of enjoyment. Interestingly, impairments and activity limitations had little influence on enjoyment. Intelligence was the only variable that reached significance, suggesting that severity of disability is not an important determinant of satisfaction and pleasure in participating in leisure. Hyperactivity was associated with less enjoyment of skill-based activities, probably because these activities require greater focus and attention. Children with peer problems (few friends, bullied, prefer adults) were more likely to enjoy recreational and social activities, possibly because these leisure activities provided opportunities to socialize with peers and develop friendships. We validated the relationship between age and sex and participation reported by Law et al.4 Specifically, there was an association between older age and decreased enjoyment of self-improvement activities, and between female sex and greater likelihood of enjoying skill-based and self-improvement activities. This probably reflects patterns seen in typically developing peers. Enjoyment seemed more limited when parents were highly stressed, therefore warranting attention by health professionals. Children receiving rehabilitation services were more likely to enjoy active-physical activities, suggesting that these services may facilitate competences and self-assurance in these areas.
There are several limitations to this study. We did not include measures of environment. Recent qualitative and quantitative studies have demonstrated the important influence of the physical, social and attitudinal environment on participation.3,9 For example, district of residence, family preferences, and social supports are key predictors of participation for children with physical disabilities.9,30,35 These variables are potentially modifiable, and it will therefore be important to consider them in future studies. The CAPE asks about participation over the past 4 months, and there may be seasonal effects, with winter in Canada posing additional challenges. However, in general, children who are active in one season are likely to find comparable activities in other seasons. We recognize that using a stepwise selection model is an initial exploratory method, and therefore the results will require future validation.28 Nonetheless, additional bootstrap methods showed the same estimates with fairly small confidence intervals. Furthermore, bootstrap standard errors (not shown) approximated the standard errors of the original estimates in the best models by using stepwise selection methods. Sample size was small and focused on children with mild to moderate motor limitations; studies on larger samples with inclusion of children of all disability levels (with proxy report) are therefore needed. For some models, r2 was small, highlighting that there are as yet unknown variables that exert an influence on participation. This study provides initial evidence of several impairments, activity limitations and contextual factors that seem to influence involvement in and enjoyment of leisure activities that should be considered so as to promote participation.
Rehabilitation services focus primarily on function and skill development, with the expectation that this will translate into greater participation and enhanced quality of life.13,36 Our results suggest that access to rehabilitation services at school age continues to be important in enhancing functional autonomy in mobility and hand function, communication, and social development, because these areas exert direct influences on leisure participation. Adaptive strategies to promote functional success in these domains should be given high priority. Services focused on leisure domains should take advantage of what is intrinsically motivating to the child and should be directed at promoting the favorable situations for activities of a child’s choosing. Behavioral difficulties can have an impact on involvement in and enjoyment of leisure activities, and should be addressed by health professionals. Family-centered approaches to service delivery underscore the importance of considering priority issues for the family, such as coping and adaptation. Therefore, parental stress levels, which were shown to exert a negative influence on participation, should be evaluated intermittently by professionals, and interventions to optimize family well-being should be pursued. Advocacy for new policies and community-based programs is also clearly needed, to minimize barriers to participation.
The benefits of participation in leisure activities are numerous. Active engagement in meaningful activities of one’s own choosing is essential for promoting health and personal autonomy, skill development and productivity, community integration, and life satisfaction. The identification of possible determinants of participation is, therefore, essential, for the planning of effective rehabilitation programs and services, and health promotion initiatives that will contribute to a ‘better life’ for children with CP and for their families.