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Pediatric-Onset Rehabilitation

Play and Participation

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.

Author, Year

Country

Study Design

Sample Size

Population

Intervention

Outcome Measure

Results

(Ma et al., 2016)

Canada

Observational

N=174

Population: Pediatric-sustained SCI (<19 yr; n=87): Age: 38.6±12.3 yr; Gender: males=61, females=26; Time since injury: 24.1±14.0 yr; Level of injury: C1-4=6, C5-8=35, T1-5=12, T6-L5=34; Severity of injury: complete=41, incomplete=46. Adult-sustained SCI (19+ yr; n=87): Age: 39.5±10.9 yr; Gender: males=62, females=25; Time since injury: 12.8±10.0 yr; Level of injury: C1-4=8, C5-8=33, T1-5=11, T6-L5=35. Severity of injury: complete=40, incomplete=45.

Intervention: None. Secondary analysis of data from the Study of Health and Activity in People with SCI (SHAPE-SCI) (Martin Ginis et al., 2008).

Outcome Measures: Functional Independence Measure (FIM) motor subscale, Short Form 36 (SF-36), number of physician visits, Patient Health Questionnaire 9-item (PHQ-9), Physical Activity Recall Assessment for People with Spinal Cord Injury (PARA-SCI), Craig Handicap Assessment and Reporting Technique (CHART), Satisfaction with Life Scale (SWLS)

1.         Compared to adult-sustained SCI, participants with paediatric-sustained SCI reported significantly greater functional independence (FIM motor subscore; p=0.03), less pain (SF-36 pain subscore; p=0.02), and fewer visits to the doctor in the past year (p=0.04).

2.        There were no significant differences between adult- or pediatric-sustained SCI groups with respect to perceived health status (SF-36 general health subscore) or depressive symptoms (PHQ-9).

3.        Compared to adult-sustained SCI, those with pediatric-sustained SCI reported more minutes of moderate–heavy leisure time physical activity (PARA-SCI; p=0.05), and scored higher on measures of social and occupational participation (CHART; p=0.04 and p=0.03, respectively).

4.        There were no significant differences between adult- or pediatric-sustained SCI groups with respect to life satisfaction.

(Riordan et al., 2015)

USA

Observational

N=340

Population: Age: 13.2.2±3.9 yr; Age at injury: 8.2±5.8 yr; Gender: males=194, females=146; Three Level/ Severity Injury Groups: tetraplegia AIS ABC=96, paraplegia AIS ABC=191, AIS D=53.

Intervention: None. Survey.

Outcome Measures: Children’s

Assessment of Participation and Enjoyment (CAPE), Pediatric Quality of Life Inventory (PedsQL), Revised Children’s Manifest Anxiety Scale (RCMAS), Children’s Depression Inventory (CDI).

1.         Subjects with paraplegia ABC and AIS D injuries participated (CAPE) in more activities than those with tetraplegia ABC (p=0.002 and p=0.018, respectively).

2.        There were no significant differences between the participation frequency (CAPE) of subjects with paraplegia ABC and those with AIS D injuries.

3.        Subjects with paraplegia ABC reported higher social QOL (PedsQL) than those with tetraplegia ABC (p=0.001) and AIS D injuries (p=0.002).

1.         There were no differences between subjects in the three neurological impairment categories when examining scores exceeding the clinical cut-off for anxiety or depression (RCMAS and CDI).

(Russell et al., 2015)

USA

Observational

N=199

Population: Age at interview: 16.0±1.7 yr; Age at injury: 11.0±5.5 yr; Gender: males=112, females=87; Injury etiology: non-traumatic=41, traumatic=156; Level of injury: tetraplegia=76, paraplegia=123; Severity of injury: AIS A=109, AIS B, C, D=79.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE), Pediatric Quality of Life Inventory (PedsQL), Revised Children’s Manifest Anxiety Scale (RCMAS), Children’s Depression Inventory (CDI), Kidcope.

1.         The ineffective copers demonstrated the greatest level of distress, followed by the active copers, the avoidant copers, and the cognitive copers.

2.        The cognitive copers had significantly lower mental health symptoms (p<0.001) and significantly higher self-report of emotional QOL (p<0.001) than the ineffective, active, and avoidant copers.

3.        The ineffective copers had significantly lower school-related QOL than both the avoidant and cognitive copers (p=0.006).

4.        The active coping group was not significantly different from avoidant or ineffective copers on any dimension of QOL or mental health.

5.        The active copers participated in activities with significantly greater frequency (p<0.001) than the ineffective and avoidant groups.

6.        The avoidant group reported the lowest level of activity enjoyment, with significantly lower activity enjoyment (p=0.010) compared with the active copers.

(Kelly & Vogel, 2013)

USA

Observational

N=410

Population: Age at interview: 12.0±4.9 yr; Age at injury: 7.3±6.0 yr; Gender: 231 males, females=179; Severity of injury: AIS A (complete)=226; Level of injury: paraplegia=269.

Intervention: None. Survey.

Outcome Measures: Assessment of Preschool Children’s Participation (APCP), Children’s Assessment of Participation and Enjoyment (CAPE), Pediatric Quality of Life Inventory (PedsQOL), Behaviour Assessment System for Children Second Edition (BASC-2), Revised Children’s Manifest Anxiety Scale (RCMAS), Children’s Depression Inventory (CDI).

1.         Of those with BASC-2 data, 3 (6.5%) children had a clinically significant anxiety score and 4 (8.0%) children had a clinically significant depression score.

2.        School-aged children ages 6-12 were most likely to engage in watching TV or a rented movie, playing computer or video games, and playing board or card games and were least likely to do gymnastics or do a paid job.

3.        Overall, school-aged children rated their emotional QOL as highest and school QOL as lowest.

4.        Of the school-aged children that completed the RCMAS, 9 (7.4%) fell above the clinical cut-off for anxiety and of those that completed the CDI, 5 (4.2%) fell above the clinical cut-off for depression.

5.        Younger adolescents ages 13-15 were most likely to engage in watching TV or a rented movie, listening to music, and playing computer or video games and were least likely to be learning to dance, doing gymnastics, and doing martial arts.

6.        Overall, younger adolescents rated their social QOL as highest and school QOL as lowest.

7.        Of the younger adolescents that completed the RCMAS and CDI, 6 (7.3%) fell above the clinical cut-off for anxiety and 2 (2.4%) above the clinical cut-off for depression.

8.        Older adolescents ages 16-18 were most likely to engage in watching TV or a rented movie, listening to music, and talking on the phone and were least likely to be learning to dance, doing gymnastics, and doing martial arts.

9.        Overall, older adolescents rated their social QOL as highest and school QOL as lowest.

10.      Of the older adolescents that completed the RCMAS, 23 (17.2%) fell above the clinical cut-off for anxiety and of those that completed the CDI, 7 (9%) fell above the clinical cut-off for depression.

(Kelly, Klaas, et al., 2012)

USA

Observational

N=340

Population: Group: Children (6-12 yr) =133, Adolescents (13-18 yr) =207. Age: 13.3±3.8 yr. Time since injury: 5.1±4.3 yr, Level of injury: paraplegia=224; Severity of injury: complete=187.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE; i.e., participation, diversity, frequency, intensity, context), Pediatric Quality of Life Inventory – Psychosocial Health Scale (PHS) (only emotional, social, school subscales).

1.         For children (6-12 yr), Regression analysis showed that where children participate (i.e., further from home) positively and significantly predicted QOL subscales after controlling for age, sex, injury level, and injury duration.

2.        For adolescents (13-18 yr), regression analysis showed that subject characteristics “who” (i.e., being male, having paraplegia, and participating with a more diverse group) positively, and significantly predicted QoL after controlling for child age, sex, injury level, and injury duration.

(Kelly, Mulcahey, et al., 2012)

USA
Observational

N=420

Population: Age: 1-18 yr

Intervention: None. Survey.

Outcome Measures: Computerized Adaptive Testing (CAT), Children’s Assessment of Participation and Enjoyment (CAPE), Revised Children’s Manifest Anxiety Scale (RCMAS), Children’s Depression Inventory (CDI), Pediatric Quality of Life Inventory (PedsQL), Kidcope.

1.         Of those with SCI, 9% scored above the cut-off level that would indicate significant clinical concern, compared with 16% of the normative group. When the group was divided into children (7-12 yr old) and adolescents (13-17 yr old), both groups scored within the average range of anxiety.

2.        In the SCI sample, 5% scored above the cut-off that would indicate clinically significant depression compared with 7% in the normative group.

3.        There were no significant associations of anxiety or depression with any of the demographic or injury-related factors, except that more anxiety was associated with being female and having a shorter duration of injury.

4.        Depression, but not anxiety, was associated with decreased community participation.

5.        Both increased depression and increased anxiety were associated with decreased QOL.

6.        Child mental health significantly predicted self-report QOL, whereas child and caregiver mental health significantly predicted proxy-report QOL. Caregiver mental health was a stronger predictor of how caregivers rated the QOL of their children than child mental health.

7.        With regard to psychological outcomes, use of most coping strategies correlated with increased anxiety, increased depression, and decreased QOL. Youth who used cognitive restructuring experienced decreased depression.

8.        With regard to frequency of participation, use of self-criticism correlated with less participation, while use of social support was related to increased participation.

9.        Youth who reported feeling effective when coping also reported more positive outcomes and more enjoyment while participating.

(Lindwall et al., 2012)

USA

Observational

N=294

Population: Age at interview: 13.7±3.5 (7-18) yr; Age at injury: 8.4±5.8 (0-17) yr; Time since injury: 5.4±4.5 (1-18) yr; Gender: males=162, females=132; Level of injury: paraplegia=67%, tetraplegia=33%.

Intervention: None. Survey.

Outcome Measures: Kidcope, Children’s Assessment of Participation and Enjoyment (CAPE).

1.         Higher levels of social support and lower levels of self-criticism were associated with higher participation in informal activities (p<0.01 and p<0.05, respectively).

2.        Lower levels of social withdrawal were associated with participation in informal activities with a greater diversity of individuals (p<0.05).

3.        Lower levels of blaming others were associated with higher enjoyment of informal activities (p<0.05).

4.        Higher levels of cognitive restructuring were associated with participation in formal activities with a greater diversity of individuals and in settings further from home (p<0.05).

5.        Frequency of participation and enjoyment in formal activities were not associated with any of the coping variables.

(Klaas et al., 2010)

USA

Observational

N=194

Population: Children: Age at interview: 13.2±3.7 yr; Age at injury: 7.2±5.7; Gender: males=106, females=88; Level of injury: tetraplegia=57, paraplegia=137. Caregivers: mothers=150, fathers=21, grandmother=10, other=13.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE).

1.         Subjects participated in a mean of 23.83 (43%) (range 9-44) of the 55 activities included in CAPE, of which most activities were sedentary and informal.

2.        Subjects participated more often in informal activities (p<0.001) and reported higher levels of enjoyment with these (p=0.046).

3.        When participating in formal activities young people (6-12 yr) were more socially engaged (p<0.001) than older subjects (13-18 yr); formal activities were more community-based than activities in the informal domain (p<0.001).

4.        Females participated more often in and enjoyed informal activities more than males did (p<0.05).

5.        Young people with paraplegia participated more in informal activities (p=0.002).

6.        Young people with parents with college experience participated more in formal activities (p=0.009) and reported greater enjoyment in formal activities (p=0.004).

7.        There was also a significant interaction of caregiver education by injury level (p=0.034).

(Gorzkowski et al., 2010)

USA

Observational

N=97

Population: Pediatric-onset SCI: Age at interview: 12.5±3.2 yr; Age at injury: 6.8±5.3; males=0, females=97; Level of injury: paraplegia=79, tetraplegia=18; Severity of injury: complete=50, incomplete=47.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE), Children’s Depression Inventory (CDI), Pediatric Quality of Life Inventory (PedsQL).

1.         On average, subjects participated in 77% of the assessed social activities and 59% of job-related activities; social activities were completed more frequently, further from home, and with a broader group of people than job-related activities.

2.        The relationship between social participation context (CAPE social diversity, intensity, with whom, where) and QOL (PedsQL) was mediated by depression (CDI) (p<0.05); a greater social participation context was associated with decreased depression, which was then associated with greater QOL.

3.        The relationship between job participation (CAPE diversity and intensity) frequency and QOL (PedsQL) was mediated by depression (CDI) (p<0.05); a greater job participation frequency was associated with decreased depression, which was then associated with greater quality of life.

(Anderson et al., 2009)

USA

Observational

N=118

Population: Age at interview: 12.3±3.0 yr; Gender: males=61, females=57; Time since injury: 6.4±4.3 (0-16) yr; Level of injury: tetraplegia=89, paraplegia=29; Severity of injury: AIS A=57, AIS B=13, AIS C=22, AIS D=17.

Intervention: None. Survey.

Outcome Measures: Functional Independence Measure (FIM), Children’s Depression Inventory (CDI), Revised Children’s Manifest Anxiety Scale (RCMAS), Pediatric Quality of Life Inventory (PedsQL), Children’s Assessment of Participation and Enjoyment (CAPE).

1.         13% of the young people with SCI had scores above the clinical cut-off for anxiety, compared with 16% of the RCMAS normative group.

2.        6% of the patients fell above the clinical cut-off range for depression, which is very similarly to the 7% above cut-off in the normative group.

3.        Anxiety and depression were each only associated with community participation (p=0.005 and p=0.030, respectively), in that the more anxious or depressed children were more apt to do activities closer to their homes rather than at someone else’s house or in the community.

4.        Lower total QOL ratings for all subscales were associated with both anxiety and depression (p<0.001).

5.        The total CDI and RCMAS scores were significantly correlated with one another (r=0.742, p<0.001).

(Johnson et al., 2004)

USA

Observational

N=66

Population: Age: 16 yr; Gender: males=35, females=31; Age at Injury: 10 yr; Level of Injury: C1-6=19, C7-T6=16, T7-S4=31. Ambulation: Ambulatory=1, Crutches=3, Manual Wheel Chair=45, Power Wheelchair=17.

Intervention: None. Survey.

Outcome Measures: Participation in, and satisfaction with, 49 recreational activities.

 

1.       ln the mild intensity category of activities, for all levels of injury, the 3 most frequent activities were: listening to music (mean 2.6 h/d); computer use (mean 2.2 h/d); watching television (mean 2.1 h/d.

2.      The higher the intensity of activity, the lower the participation rate was among all injury levels.

3.      The C7-T6 group spent the most time engaged in recreational activities and also had the highest number of activities participated per year.

4.     The T7-S4 had significantly more hours spent in high-intensity activities than did the other 2 groupings.

5.      The average number of participants per activity decreased with increasing intensity levels of activity (i.e., mild=35, moderate=22, high=9).

6.     Satisfaction scores varied from 3.8 to 4 .3 out of 5 across all activity categories and all injury groupings, indicating a high and consistent satisfaction rate.

Discussion

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.

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