Play is the work of children. It is through play and participation that children learn to interact with the world, acquire language, discover their own strengths and weakness, and develop the capacity for self-direction and regulation (Johnson & Klaas 2007). Mastery over the environment, enhanced socialization, and development of self-concept are critical in the maturation and acquisition of cognitive and motor skills. SCI significantly impacts the child’s growth and development (Vogel et al. 1997), delaying milestones and creating a downstream impact on overall health, development of disease and comorbidities, functional independence, social isolation, and life satisfaction (Tasiemski et al. 2005). Children with disabilities are at a risk for decreased participation, owing to disruption in motor skills, ease of communication, and access (Brown & Gordon 1987). Children with physical disabilities, like SCI, are reported to have lower levels of participation, fewer social activities, and spend more time in sedentary activities than their able-bodied peers (Brown & Gordon 1987). Additionally, they may experience exclusion by their able-bodied peers or environmental barriers limiting their participation in typical childhood activities (Brown & Gordon 1987). Lack of play and participation has been linked to decreased motor skill acquisition and cognitive development, and greater childhood mental health problems in children with and without disabilities (Brown & Gordon 1987; Louv 2008). Issues of play and participation have the potential to compound risks to development, independence, and life satisfaction associated with SCI. Conversely, successful integration in the community and ample play opportunities may mitigate some of the long-term consequences of SCI at all neurological levels.
This chapter will review the limited data and descriptions of play and community participation in children with SCI and elucidate trends herein. We will review evidence on the impact of play and participation on the development and quality of life of children with SCI and the influence of age at onset on patterns of play and participation.
Literature on play and community participation for people with SCI acquired in childhood is limited. Nearly all studies are low-level evidence, observational cohorts, and describe patterns of participation. Nevertheless, there are some lessons to be gleaned from the current body of literature and some considerations for future explorations of the topic.
Persons with SCI acquired in childhood have increased participation and greater functional independence, as compared to those with adult-acquired SCI (Ma et al. 2016). This is good news, as it has the potential to impact the increased morbidity and mortality previously reported for those with pediatric-onset SCI (Shavelle et al. 2007). Ma, et al. (2016) suggest that health behaviors and self-management of health increase with experience living with SCI and that the availability of support in school and family settings enhances reintegration and promotes social and occupational participation. Barriers to adults’ re-entry to work settings are higher, more costly, and less supported by the community. Additionally, the data suggests that younger age at injury and higher levels of parental education positively impact participation, supporting the assumption that reintegration mediated by family and school resources results in more meaningful and durable participation (Klaas et al. 2010).
Children with paraplegia or incomplete injuries participate in more activities than children with complete tetraplegia (Riordan et al. 2015). The frequency of participation across the groups, however, is not significantly different (Riordan et al. 2015). It stands to reason that, children with greater physical capacities would have a greater range of activities available to them, for reasons related to both motor skills and accessibility. Children with paraplegia also report more participation in informal social activities (Klaas et al. 2010), again likely connected to their decreased need for caregiver support, increased motor skills, and lower community barriers.
The level of activity participation in children with SCI may also be related to their psychological well-being and coping strategies (Anderson et al. 2009; Kelly, Mulcahey et al. 2012; Lindwall et al. 2012; Russell et al. 2015). For example, depression has been associated with decreased community participation in children with SCI (Kelly, Mulcahey et al. 2012). In addition, according to Anderson et al. (2009), children with SCI who score high on depression and/or anxiety tend to engage in activities that are close to their homes instead of at someone else’s house or in the community. Two studies examined the relationship between coping strategies and activity participation in the pediatric SCI population. In their study involving 199 adolescents with SCI, Russell et al. (2015) found that participants who were categorized as active copers showed significantly greater participation compared to ineffective, avoidant, and cognitive copers. Similarly, Lindwall and colleagues (2012) work revealed that higher levels of social support and cognitive restructuring and lower levels of self-criticism, social withdrawal, and blaming others predicted favorable participation outcomes in their sample of 299 children with SCI. The authors further suggested that Interventions that encourage higher levels of positive coping strategies and lower levels of negative and avoidant strategies may promote activity participation in youth with SCI.
As indicated in Kelly and colleagues (2013) study, the types of activities that children with SCI choose to engage in seem to change over time following a developmentally appropriate trajectory. More specifically, in their sample of 410 children with SCI between ages 2 and 18 years, top activity preferences shifted from play and art and crafts for the youngest participants and watching television and playing video and board games for school-aged youth and adolescents to engaging with peers for younger and older adolescents. It is worth noting that across age groups, the activities that study participants preferred tended to be sedentary in nature. However, the authors pointed out that this pattern may be reflective of a general concern for today’s children and youth rather than for those with SCI in particular (Kelly & Vogel 2013).
This engagement in informal activities may have a particular impact on the acquisition of self-concept and overall mental health of children with SCI. In children without disabilities engagement in informal, unstructured, predominately outdoor play leads to the development of self-direction and regulation (Louv 2008). These have been linked to self-efficacy, independence, and mental health for typically developing children (Louv 2008). Informal play and participation are difficult for children with SCI to achieve, and increase in complexity as the child’s physical needs increase. Compounding this is a cultural shift toward increasing participation in structured activities, like organized sports, and sedentary activities, like watching television, for all children (Louv 2008). While this might look like an enhanced opportunity for children with SCI—the structured activities offer them support and the sedentary activities reduce physical demands—the lack of unstructured, informal play has a significant negative impact on childhood mental health (Louv 2008). The data reflects this as high-intensity participation, more frequent participation, variable location, and peer groups are all associated with decreased depression and improved quality of life for those with pediatric-onset SCI (Gorzkowski et al. 2010; Johnson et al. 2004; Kelly, Klaas et al. 2012; Klaas et al. 2010).
Although participation for children with SCI varies and is promising into adulthood, it is still significantly less than able-bodied age-matched peers (Centre 2013). These disparities highlight the need for more reintegration strategies. Increased participation and engagement in activity have been linked to lower levels of depression in adults and it stands to reason that this would hold for children alike. For this reason, it would benefit the community to study the barriers to participation for children with SCI and interventions aimed at improving rates of participation. The current literature points toward increasing self-efficacy, increasing access to high-intensity activity and diversifying locations and peers as potential points to improve play and community participation in children with SCI. A broader, and perhaps more challenging task, maybe to expand unstructured play for children with SCI, so it better matches their non-disabled peers, as a way to recover some of the formative experiences of childhood, so often lost in the case of severe disability. Interestingly, the literature rarely cites access or environmental barriers as impeding participation in children with SCI, suggesting that the classic “where there’s a will, there’s a way” may support formative experiences for these children. It may be of benefit to assess psychosocial factors, community support, financial resources, and familial structures, to see if there are gaps in participation for children with SCI based on these factors.
Future studies may more directly control play and participation schemes to assess near and long-term impacts. Studies may consider using the observational evidence described here to inform design and control variables, like the location of participation, peer groups, and play intensity levels. Some of this work may overlap with rehabilitation interventions, particularly when looking at the impact of intensity of participation on independence and quality of life. This has the potential to transition classically rehabilitative interventions to more community settings, like elementary school gym classes for example, and offer clinicians and families strategies for successful integration.