Assessing patterns of participation and enjoyment in children with spinal cord injury
Abstract
Aim To determine patterns of participation and levels of enjoyment in young people with spinal cord injuries (SCI) and to assess how informal and formal participation varies across child, injury-related, household, and community variables.
Method One hundred and ninety-four participants (106 males, 88 females; mean age 13y 2mo, SD 3y 8mo, range 6–18y) with SCI and their primary caregivers completed a demographics questionnaire and a standardized measure of participation (the Children’s Assessment of Participation and Enjoyment, [CAPE]) at three pediatric SCI centers in a single hospital system in the United States. Their mean age at injury was 7 years 2 months (SD 5y 8mo, range 0–17y); 71% had paraplegia, and 58% had complete injuries.
Results Young people participated more often in informal activities (t(174)=29.84, p<0.001) and reported higher enjoyment with these (t(174)=2.01, p=0.046). However, when engaging in formal activities, they participated with a more diverse group (t(174)=−16.26, p<0.001) and further from home (t(174)=−16.08, p<0.001). Aspects of informal participation were related to the child’s age, sex, and injury level, and formal participation to the child’s age and caregiver education. Caregiver education was more critical to formal participation among young people with tetraplegia than among those with paraplegia (F(4,151)=2.67, p=0.034).
Interpretation Points of intervention include providing more participation opportunities for young people with tetraplegia and giving caregivers the resources necessary to enhance their children’s formal participation.
A spinal cord injury (SCI) is a life-changing event and is particularly devastating when it occurs during childhood. Many unique challenges exist for children with SCI as a result of both the injury and the dynamic growth and development issues that occur during childhood.1 One area of particular concern is that of participation. The World Health Organization2 defines participation as ‘involvement in a life situation’ and the result of peer interaction within an individual’s social and physical environment. Researchers have found that involvement, particularly in physical recreation and sports, is highly related to overall health, disease prevention, maintenance of functional independence,3 and life satisfaction.4 Despite this, rates of participation tend to be lower among young people with disabilities.5 In the present study, we explored participation among young people with SCI.
Participation is essential to the development of children. It is often through participation that children learn about societal expectations, develop communication skills, build friendships, and conquer important milestones while gaining skills and knowledge imperative to success at home and in the community.6 Children with disabilities are at risk of decreased participation.5 A disability creates a major disruption in children’s ability to play and interact with their environment.7 This disruption may adversely affect the developmental process, as lack of socialization and participation affect crucial physical and psychosocial milestones. In addition, children with disabilities often experience exclusion by able-bodied peers, which may limit their involvement in typical childhood activities.5,8
Past research indicates that children with disabilities often participate in fewer types of activities overall, participate in fewer social activities, and spend more time in quiet, sedentary activities.5,9,10 Longmuir and Bar-Or11 found that children with physical disabilities or visual impairments undertook more sedentary activity than those with chronic illness. Simeonsson et al.12 observed significantly lower participation among children with physical or neurological impairment. Imms et al.13 found that severity of disability affected participation, but only among the most severely impaired young people.
In a study of participation in 427 children with physical disabilities, using the Children’s Assessment of Participation and Enjoyment (CAPE), investigators found that young people engaged more often in informal than in formal activities.6 More recently, King et al.14 found that children with disabilities participate in fewer formal and informal activities and with less intensity than their able-bodied peers. Further, children without disabilities reported greater enjoyment of formal activities than those with disabilities. These results are consistent with other research5,15 that found that children with disabilities have low levels of participation in community-based formal activities and in spontaneous social activities.14
Literature specific to participation in children with SCI is limited. In one study of 66 young people with SCI, the participants reported involvement in a preponderance of sedentary homebound activities that involved minimal social interaction, and they reported little participation in more strenuous or physical activities.16 In another study of participation in organized community activities, 62% of young people reported no participation in sports, clubs, or youth centers after injury.10 Results from this research suggest that participation rates are low among the pediatric SCI population.
In an era of increased sedentary lifestyles, participation has become more important for all children, yet research conducted into young people with physical disabilities suggests that rates of participation are not at optimal levels. As a first step towards improving interventions aimed at enhancing participation, we describe the participation of young people with SCI and explore how informal and formal participation relate to key demographic, injury-related, household, and community variables.
Method
Participant recruitment
The 194 study participants were recruited as part of a larger project to examine relationships between psychosocial outcomes in children with SCI and their primary caregivers. We recruited children with SCI aged between 6 and 18 years who had been injured at least 1 year previously and who had received services between March 2007 and December 2008 from one of the three Shriners Hospitals for Children SCI programs in Chicago, Philadelphia, and Northern California. Thirty-seven young people refused to participate in the study for reasons such as not being interested and participating in too many other studies.
Instruments
A study-specific demographics questionnaire was completed by the child’s primary caregiver. Injury level was determined from a review of medical records. The CAPE17,18 was administered to the young people. This CAPE assessment includes 55 items to measure participation for children with disabilities. Items are categorized into two domains: formal and informal. If a child answers that they participate in an activity, they then answer questions about how often, with whom, where, and how much they enjoy that activity. All activities endorsed by participants are therefore scored on five dimensions (Table I).
| Dimension | Response options | Interpretation | |
|---|---|---|---|
| Diversity | 0 | Does not participate in activity | Higher score indicates more variety of activities |
| 1 | Does participate in activity (total possible is 55, i.e. a score of 1 for each of 55 activities) | ||
| Intensity | 1 | 1 time in past 4mo | Higher score indicates greater extent of time spent participating |
| 2 | 2 times in past 4mo | ||
| 3 | 1 time a month | ||
| 4 | 2–3 times a month | ||
| 5 | 1 time a week | ||
| 6 | 2–3 times a week | ||
| 7 | 1 time a day or more | ||
| With whom | 1 | Alone | Higher score indicates more social engagement |
| 2 | With family (parents, siblings) | ||
| 3 | With other relatives (grandparents, aunts, uncles, cousins) | ||
| 4 | With friends | ||
| 5 | With others (instructors, other individuals, or different types of people) | ||
| Where | 1 | At home | Higher score indicates more community-based participation |
| 2 | At a relative’s home | ||
| 3 | In your neighborhood | ||
| 4 | At school (but not during classes) | ||
| 5 | In your community | ||
| 6 | Beyond your community | ||
| Enjoyment | 1 | Not at all | Higher score indicates more enjoyment from participation |
| 2 | Somewhat; sort of | ||
| 3 | Pretty much | ||
| 4 | Very much | ||
| 5 | Love it | ||
- a Children’s Assessment of Participation and Enjoyment (CAPE). Copyright © 2004 NCS Pearson, Inc. Adapted and reproduced with permission of publisher, NCS Pearson, Inc. All rights reserved. ‘Children’s Assessment of Participation and Enjoyment’ and ‘CAPE’ are trademarks, in the US and/or other countries of Pearson Education, Inc. or its affiliates.
Procedure
Data were collected during in-patient hospitalizations or outpatient visits. After providing written informed consent and assent, participants completed the survey instruments themselves or received help from a research assistant. Young people who had been hospitalized for longer than 4 months were either excluded or were asked to answer questions about life before their most recent hospitalization. Survey administration took between 45 and 75 minutes depending on the child’s reading level and the amount of information that the child shared about participation. The project secured approval from the institutional review boards at all three hospitals, and the Ethical Treatment of Human Subjects protocol was followed throughout the process.
Data analysis
Descriptive statistics were used to summarize sample characteristics and rates of participation. Means are presented to describe averages. Differences between informal and formal participation scores by dimension (how often, with whom, where, and enjoyment) were assessed using paired-samples t-tests (diversity was not assessed because the number of items in the informal and formal domains differed).
Differences in informal and formal participation between subgroups of young people were assessed using multivariate analysis of variance (MANOVA). MANOVA allows for examination of interaction effects between independent variables and control over type I error.19 Two two-way MANOVA tests were used to assess differences in informal and formal participation related to the age (6–12y or 13–18y) and sex of the child. Two three-way MANOVA tests were used to assess differences in informal and formal participation related to child injury level (paraplegia or tetraplegia), caregiver education (college or no college), and community type (urban or rural). Four dependent variables were included in each equation: with whom, where, enjoyment of informal or formal participation, and a composite that combined diversity and intensity into an overall frequency variable. This composite was created because the diversity and intensity scores were highly correlated (0.873 for informal participation, 0.917 for formal participation), indicating that including both as dependent measures would be problematic. In addition, the authors of CAPE suggest examining diversity and intensity scores together to provide a more complete description of participation.17 For each MANOVA, the reported results include the F statistic and p value for all main effects and significant interactions (using Wilks’ criterion), and partial η2 to assess effect size for each significant finding. Univariate analysis of variance tests were conducted to follow up on significant main effects and interactions. Sample sizes for the MANOVA analyses are presented below; these changed for each analysis because 19 young people did not participate in any formal activities, and data on demographic variables were incomplete, as reported below. Normality was assessed, and the natural log transformation of the new formal frequency composite was used because of a non-normal distribution.
Two multivariate analyses of covariance were also conducted to test the impact of injury level, caregiver education, and community type on informal and formal participation while adjusting for child age and sex. These results were not different from the MANOVA results and therefore will not be discussed.
Results
A total of 194 young people were enrolled (106 males, 88 females). Most were Caucasian (n=128, 66%), with 28 (14%) Hispanic, 11 (6%) African-American, and 18 (9%) of other races (data on race were missing for nine participants, 5%). The mean age at interview was 13 years 2 months (SD 3y 8mo, range 6–18y), and the mean age at injury was 7 years 2 months (SD 5y 8mo, range 0–17y); 137 participants (71%) had paraplegia, and 57 (29%) had tetraplegia. The injuries were due to vehicular or pedestrian accidents (n=97, 50%), medical or surgical interventions (n=58, 3/10), violence (n=17, 9%), sports activities (n=15, 8%), falls (n=5, 2%), or other or unknown causes (n=2, 1/100). Primary caregivers interviewed were predominantly mothers (n=150, 77%); 21 (11%) were fathers, 10 (5%) were grandmothers, three (2%) were other family members, and no data on relationship were available for 10 caregivers (5%). Of the 180 caregivers for whom information on education was available, 116 (64%) had some college experience. One hundred families (51%) reported living in a small town or rural area, and 87 (45%) lived in a city, urban, or suburban area (data were not available for seven families, 4%).
Participation of young people with SCI
Table II includes mean participation scores in all five dimensions for overall participation and for the informal and formal domains. Overall, young people participated in a mean of 23.83 (43%) of the 55 activities included in CAPE, with a range of 9 to 44 activities. Table SI (supporting information published online) lists participation rates for all activities, and shows that young people with SCI participate mostly in sedentary, informal activities.
| Dimension | Overall (55 items) | Domain | |
|---|---|---|---|
| Informal (40 items) | Formal (15 items) | ||
| Items endorsed on average, n (%) | 24 (43) | 21 (53) | 3 (18) |
| Participants endorsing at least one activity, n (%) | 194 (100) | 194 (100) | 175 (90) |
| Diversity | 23.83 (6.50) | 21.09 (5.32) | 2.74 (2.05) |
| Intensity (possible score range 1–7) | 2.08 (0.61) | 2.56 (0.69) | 0.90 (0.69)a |
| With whom (possible score range 1–5) | 2.65 (0.52) | 2.52 (0.53) | 3.71 (1.00)a |
| Where (possible score range 1–6) | 2.81 (0.62) | 2.64 (0.65) | 4.17 (1.17)a |
| Enjoyment (possible score range 1–5) | 3.97 (0.52) | 3.97 (0.53) | 3.85 (0.99)b |
- a p<0.001; bp<0.05.
Young people participated more often in informal activities (t174=29.84, p<0.001) and reported higher levels of enjoyment with these (t174=2.01, p=0.046). When participating in formal activities young people were more socially engaged (t174=−16.26, p<0.001). Further, formal activities were more community-based than activities in the informal domain (t174=−16.08, p<0.001).
How participation relates to sex and age
Two two-way MANOVAs were conducted to evaluate the relationship between a child’s sex and age and informal and formal participation (see Table III for mean participation scores by subgroup).
| Variable | Domain | Dimension | ||||
|---|---|---|---|---|---|---|
| Diversity | Intensity | With whom | Where | Enjoyment | ||
| Current age | ||||||
| 6–12y | Informal | 23.45 (4.71) | 2.82 (0.69) | 2.31 (0.33) | 2.43 (0.48) | 4.04 (0.54) |
| 13–18y | 19.51 (5.13) | 2.38 (0.63) | 2.66 (0.58) | 2.79 (0.72) | 3.93 (0.52) | |
| 6–12y | Formal | 3.06 (2.08) | 1.00 (0.63) | 3.45 (1.08) | 4.02 (1.19) | 3.88 (0.91) |
| 13–18y | 2.52 (2.01) | 0.83 (0.73) | 3.90 (0.90) | 4.28 (1.14) | 3.84 (1.04) | |
| Sex | ||||||
| Females | Informal | 22.36 (5.09) | 2.70 (0.63) | 2.49 (0.54) | 2.56 (0.57) | 4.10 (0.50) |
| Males | 20.04 (5.29) | 2.45 (0.71) | 2.55 (0.52) | 2.71 (0.71) | 3.88 (0.53) | |
| Females | Formal | 2.81 (1.89) | 0.89 (0.61) | 3.89 (0.90) | 4.14 (1.15) | 3.78 (1.14) |
| Males | 2.68 (2.18) | 0.92 (0.76) | 3.55 (1.07) | 4.20 (1.19) | 3.91 (0.83) | |
| Injury level | ||||||
| Tetraplegia | Informal | 18.91 (4.82) | 2.31 (0.60) | 2.58 (0.48) | 2.66 (0.68) | 4.02 (0.56) |
| Paraplegia | 22.00 (5.27) | 2.66 (0.70) | 2.50 (0.55) | 2.64 (0.65) | 3.96 (0.52) | |
| Tetraplegia | Formal | 2.14 (1.80) | 0.73 (0.58) | 3.62 (1.14) | 4.12 (1.36) | 3.78 (1.19) |
| Paraplegia | 2.99 (2.10) | 0.97 (0.72) | 3.75 (0.95) | 4.19 (1.08) | 3.88 (0.90) | |
| Caregiver education | ||||||
| College | Informal | 21.85 (5.35) | 2.63 (0.69) | 2.47 (0.48) | 2.60 (0.63) | 3.95 (0.51) |
| No college | 19.72 (4.80) | 2.44 (0.62) | 2.63 (0.60) | 2.71 (0.71) | 4.02 (0.56) | |
| College | Formal | 3.03 (2.10) | 0.97 (0.66) | 3.67 (0.96) | 4.25 (1.10) | 3.94 (0.82) |
| No college | 2.19 (1.73) | 0.76 (0.60) | 3.88 (1.04) | 4.10 (1.32) | 3.61 (1.24) | |
| Type of community | ||||||
| Urban | Informal | 21.91 (5.92) | 2.66 (0.79) | 2.50 (0.53) | 2.61 (0.70) | 3.94 (0.54) |
| Rural | 20.42 (4.71) | 2.48 (0.59) | 2.54 (0.53) | 2.65 (0.62) | 4.02 (0.51) | |
| Urban | Formal | 2.80 (2.31) | 0.92 (0.79) | 3.79 (1.05) | 4.11 (1.18) | 3.84 (1.04) |
| Rural | 2.74 (1.85) | 0.91 (0.62) | 3.67 (0.96) | 4.23 (1.16) | 3.85 (0.95) | |
For informal participation (n=194), the combined dependent variables were significantly related to child sex (F4,187=4.11, p=0.003, partial η2=0.08) and age (F4,187=13.76, p<0.001, partial η2=0.23), but not to their interaction (F4,187=0.60, p=0.664). Subsequent analyses revealed that females participated more often in and enjoyed informal activities more than males did (females: F1,190=7.57, p=0.007; males: F1,190=8.45, p=0.004). Further, younger children (aged 6–12y) participated more often in informal activities (F1,190=26.33, p<0.001), whereas young people aged 13 to 18 years were more socially engaged and community based when participating in informal activities (F1,190=22.37, p<0.001; F1,190=13.39, p<0.001 respectively).
For formal participation (n=175), the combined dependent variables were significantly related to child age (F4,168=3.41, p=0.010, partial η2=0.08), but not sex (F4,168=1.59, p=0.179) or the interaction of age and sex (F4,168=0.726, p=0.575). Subsequent analyses revealed that young people aged 13 to 18 years were more socially engaged when participating in formal activities (F1,171=7.80, p=0.005).
How participation relates to child, injury-related, household, and community variables
Two three-way MANOVAs were conducted to evaluate the relationship between injury level, caregiver education, and community type and the dimensions of informal and formal participation.
For informal participation (n=180), the combined dependent variables were significantly affected by injury level (F4,169=3.17, p=0.015, partial η2=0.07), but not by caregiver education (F4,169=2.40, p=0.052) or community type (F4,169=0.414, p=0.799), nor by the interaction of these factors. Subsequent analyses revealed that young people with paraplegia participated more in informal activities (F1,172=10.12, p=0.002).
For formal participation (n=162), the combined dependent variables were significantly affected by caregiver education (F4,151=4.01, p=0.004, partial η2=0.10), but not level of injury (F4,151=1.92, p=0.110) or community type (F4,151=1.75, p=0.142). Subsequent analyses revealed that young people with parents with college experience participated more in formal activities (F1,154=6.99, p=0.009) and reported greater enjoyment in formal activities (F1,154=8.70, p=0.004) There was also a significant interaction of caregiver education by injury level (F4,151=2.67, p=0.034, partial η2=0.07). Subsequent analyses revealed significant interactions related to where young people participate in formal activities and how much they enjoy formal participation (Table IV).
| Participation dimension | Child level of injury | Caregiver education | F statistic | p value | |
|---|---|---|---|---|---|
| College | No college | ||||
| Wherea | Paraplegia | 4.16 (1.10) | 4.30 (1.06) | F 1,154=4.75 | 0.031 |
| Tetraplegia | 4.50 (1.07) | 3.70 (1.69) | |||
| Enjoymentb | Paraplegia | 3.89 (0.82) | 3.81 (1.06) | F 1,154=5.01 | 0.027 |
| Tetraplegia | 4.11 (0.82) | 3.22 (1.49) | |||
- aHigher score=more community-based participation; bhigher score=more enjoyment in participation.
Discussion
In this research, we explored patterns of participation and levels of enjoyment in children with SCI and assessed how participation changes across child, injury-related, household, and community variables. This study adds to the current body of knowledge on children with physical disabilities by providing the most comprehensive information to date about participation patterns for a sample of young people with SCI.
Results indicate that young people with SCI participate more often in informal activities. This is consistent with other studies in which young people with disabilities have been found to participate less often in structured and more often in quiet, sedentary activities.5,6,9,10,14 When young people with disabilities do participate in formal activities, they are more socially engaged and community based than with informal activities. This highlights the importance of formal activities as a potential bridge to expanding networks and experiences, and demonstrates the importance of providing such opportunities.
In terms of demographic characteristics, our results indicate that informal participation is related to both age and sex of the child, and formal participation is related to age. Females and younger children reported participating in more informal activities, and females reported enjoying informal participation more than males did. This is consistent with previous research6 showing that as children with physical disabilities get older their overall participation decreases, particularly in informal activities. Older adolescents are, however, more socially engaged with their participation, and their informal participation is more community-based than that of younger children. This appears to be developmentally appropriate as teenagers enter the phase of identity versus role confusion where peer relationships take center stage. This finding is consistent with trends in the general population for the transition through adolescence,20 perhaps indicating a normal developmental milestone being reached as young people with disabilities move away from their primary caregivers.
In terms of injury-related, household, and community characteristics, injury level affected participation frequency, with young people with paraplegia undertaking increased informal participation, possibly indicating that they have a more diverse set of participation opportunities available to them. Caregiver education affected formal participation in that young people with caregivers with college experience participated more frequently in formal activities and experienced increased enjoyment in such activities. The interaction of caregiver education by injury level suggests that caregiver education plays a more important role among young people with tetraplegia in terms of where they participate and how much they enjoy participation. Parents with college experience may have more ideas about participation options for their children, have additional financial resources, know how to access additional support, and have jobs that allow flexibility for parents to ensure that their children are connected to activities. Particularly for parents without college exposure, it is imperative that education on participation be provided during rehabilitation to ensure that young people have access to opportunities and develop a well-balanced leisure lifestyle.
These findings indicate the importance of understanding participation among young people with SCI and of educating young people and family members about opportunities for participation. Rehabilitation staff should conduct thorough leisure evaluations of patients with SCI, including their pre-injury activities and preferences. Identifying activities that a child wants to participate in after the injury and addressing any obstacles that may limit participation are essential. Addressing unique personal issues (such as injury level, age, sex, motivation, and fears) as well as environmental issues (such as physical accessibility, knowledge of adaptive programs, and transportation) must both be priorities if the goal is to enhance interest in participation and minimize obstacles. Frequently identified barriers to participation, such as functional ability, cost of adaptive programs or equipment, and geographic location of opportunities, can be discussed and planned for, and barriers minimized.
One additional area of concern that should be addressed with families is the low level of formal participation for children with disabilities. Formal activities, those that are organized, structured, and often led by an adult leader, are essential for development. These activities enhance skills, competence, social relationships, and overall physical and mental health. Our findings are consistent with a recent study showing lower levels of formal than informal participation in children with disabilities and lower levels of formal participation and enjoyment than in children without disabilities.14 Understanding the significant role that formal participation plays for all children, and particularly for those with disabilities, is vital.
The present study has a number of limitations. This study is limited to children and adolescents with SCI from a single hospital system, which may not be representative of the overall pediatric SCI population. This study did not include a measure of socio-economic status, a construct that is likely to be critical to determining opportunities for participation. Further, this study lacked age- and sex-matched controls of young people without disabilities; without this comparison group it is hard to make definitive statements about the participation of young people with SCI. We also experienced limitations in terms of our measurement of participation. Although the CAPE measures participants’ enjoyment of each activity assessed, there is no subjective measure of satisfaction with overall participation. Such subjective ratings should be taken into account in future research, as two children with the same amount of objective participation may experience varying degrees of satisfaction.
Researchers should also continue to work towards a more comprehensive understanding of the context of participation, and examine how participation among young people with SCI relates to variables such as pre-injury participation, family participation, quality of life, and child and caregiver mental health. Further, in order to facilitate successful intervention efforts, researchers should continue to investigate the relationship between modifiable variables at various levels that may affect the patterns of participation and enjoyment. Future work can build on the recently articulated capability model which combines the person, their resources, and the context by looking at capacity, opportunity, and choice.21 Specific to the CAPE, participation can also be explored at the activity level, as young people are likely to participate in activities at differing rates, and activities are likely to have varying levels of importance. Finally, this study offered a new way of analyzing the CAPE dimensions by creating a frequency composite that is a product of diversity and intensity scores. Future research should evaluate the utility and importance of the various dimensions of participation.
Conclusion
Participation of children with disabilities promotes physical, emotional, and social well-being.22 Current societal trends toward homebound, sedentary activities have negatively affected children and adolescents. Having a solid understanding of the patterns of participation and enjoyment of young people with SCI can positively affect the children, their families, and their rehabilitation providers. Participation patterns for those with SCI often start during the rehabilitation process, which makes the rehabilitation setting an ideal place for intervention.
This research enhances our understanding of participation patterns in children with SCI and adds to the growing knowledge base related to children with physical disabilities. It is essential that these patterns are understood in order to provide children and adolescents with physical disabilities a wide variety of appropriate opportunities for participation.
Acknowledgements
We thank the young people and their caregivers who graciously participated in this research, as well as the anonymous reviewers for their helpful comments on an earlier draft.
