Background Social participation provides youths with opportunities to develop their self-concept, friendships, and meaning in life. Youths with cerebral palsy (CP) have been reported to participate more in home-based leisure activities and to have fewer social experiences with friends and others than youths without disabilities.
Objective The objective of this study was to identify youth, family, and service determinants of the participation of youths with CP in leisure activities with friends and others who are not family members.
Design The study design was a cross-sectional analysis.
Methods The participants were 209 youths who were 13 to 21 years old (52% male), had CP, and were classified in Gross Motor Function Classification System (GMFCS) levels I to V as well as their parents. The participants were recruited from 7 children's hospitals in 6 different states. Youths completed the Children's Assessment of Participation and Enjoyment in structured interviews. Parents completed the Coping Inventory, Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Measure of Processes of Care, and demographic and service questionnaires. Researchers determined GMFCS levels. A sequential multiple regression analysis was used to determine the youth, family, and service variables that predicted participation with friends and with others who were not family members.
Results Sports and physical function, communication or speech problems, educational program, and the extent to which the desired community recreational activities were obtained explained 45.8% of the variance in the number of activities engaged in with friends. A higher level of parental education explained 6.3% of the variance in the number of activities engaged in with others who were not family members.
Limitations The youths' activity preferences and intensity of participation were not examined.
Conclusions Youth and service characteristics were determinants of participation with friends but not others who were not family members. The findings have implications for the role of physical therapists in promoting sports and physical and communication abilities and enhancing community opportunities to optimize the social participation of youths with CP.
Participation creates avenues to form friendships, develop a self-concept, and determine a sense of meaning in life.1,2 Participation is defined as involvement in life situations and represents an interaction between an individual and the physical, social, and attitudinal environments.3,4 Social participation involves forming and maintaining social relationships and is supported by accessible environments and positive interactions.5 In adolescence, social participation facilitates readiness for adult life, including work, marriage, and recreation.6 Participation in social and leisure activities enables youths to expand social networks with people not involved in their home or school routines. This real-world experience is important for youths' development of life skills and fulfillment of adult roles.7,8
Youths with physical disabilities have been reported to have limited social opportunities outside the family.9–11 Adolescents with cerebral palsy (CP) have reported being worried about a lack of friends their age and limited opportunities to interact with people other than family members.12 Previously we found that the social participation of children (6–12 years old) with CP differed from that of youths (13–21 years old) with CP on the basis of age and gross motor function.13 Although youths with CP experienced less diversity and a lower intensity of participation than did children with CP,14 youths engaged in a higher proportion of activities with friends or others than did children. Children and youths who walked without restrictions had a higher proportion of activities with friends or others than did those who walked with restrictions or were unable to walk.13 Other personal and environmental factors associated with social participation with people outside the family have not been examined for children and youths with CP.
Contemporary conceptual frameworks and empirical data15–17 have suggested that the social participation of youths with CP is influenced by youth, family, and service characteristics. The ecological perspective15 views youth and family factors as more proximal factors influencing participation and community environment (including services) as more distal factors influencing participation.15 Research has suggested that age, sex, adaptive behavior, physical and sports abilities, cognition, and communication are personal characteristics that influence the social participation of youths with CP. With respect to age, a longitudinal study revealed less participation in sports groups and recreational activities among youths who were 18 to 21 years old than those who were 13 to 15 years old.18 Girls with physical disabilities participated in more social, skill-based, and self-improvement activities, and boys participated in more physical activities.19,20 Effective adaptive behavior enables children and youths to respond to personal and environmental needs and to interact with peers.21,22 Moreover, children and youths with CP and higher levels of physical, cognitive, and communicative functioning showed a higher intensity of leisure participation and fewer restrictions in accessing and engaging in social activities.23
Family relationships, involvement in community activities, and youth- and family-centered services are family and service factors that are thought to influence the social participation of youths with CP. A higher family socioeconomic status, cohesion, open communication, and family preferences for social leisure activities were associated with higher levels of participation and social skills of children with physical disabilities.20,24,25 Services that are accessible, coordinated, and responsive to the individualized needs of youths and family members may enhance participation.26 Program information, transportation, accessible facilities, and coordinated services were frequently identified needs for the social and community participation of children with disabilities.27
Educational placement is an environmental variable that may influence social interactions with peers.28 Students with disabilities in regular classrooms reported more peer interactions than students in special classrooms.29,30 Nonetheless, students with disabilities in regular classrooms were less socially integrated than their peers without disabilities.31 The influence of educational placement on social participation has not been studied for youths with CP.
The purpose of this study was to identify youth, family, and service determinants of the social participation of youths with CP in leisure activities with friends and others who are not family members. Social participation is operationally defined as activities engaged in with people outside the family, such as friends, instructors, coaches, or tutors. We hypothesized that the determinants of participation with friends are different from the determinants of participation with others who are not family members. This hypothesis was based on the assumption that activities with friends require better mobility, communication, and social skills than activities supervised by instructors and coaches, who may be a source of formal support for making adaptations and accommodations. The results should assist physical therapists and other health care professionals in identifying services and supports that promote the social participation of youths with CP.
The participants were 209 youths who were 13 to 21 years old and had CP and their parents. The participants were part of a larger study of the activity and participation of children and youths with CP. Participants were recruited from 6 Shriners Hospitals for Children (Chicago, Illinois; Erie, Pennsylvania; Lexington, Kentucky; Sacramento, California; Philadelphia, Pennsylvania; and Springfield, Massachusetts) and Kluge Children's Rehabilitation Center, Charlottesville, Virginia. All youths who had CP and were receiving services at 1 of the 7 sites were eligible for the study if, as determined from the referrals and parent reports, they did not have a diagnosis of concomitant medical or mental health conditions, such as cancer or clinical depression. Written informed consent was provided by parents and youths who were 16 years old or older. Informed assent was provided by youths who were 13 to 15 years old.
Youth and family demographics are presented in Tables 1 and 2. The participants were 137 adolescents (13–16 years old) and 72 young adults (17–21 years old). The youths' mean age was 16.2 years (SD=2.3), 52% were male, and 68% were white. The number of youths classified in each of the 5 levels of the Gross Motor Function Classification System (GMFCS) varied from 26 to 57. Caregivers were primarily mothers (78%) and fathers (13%) and therefore are referred to as parents throughout this article. The parents' mean age was 44.6 years (SD=9.2), 51% had received education higher than high school level, and 64% were employed.
Measure of Participation: Children's Assessment of Participation and Enjoyment (CAPE)
The CAPE is a 55-item measure of participation in leisure and recreational activities, excluding the mandated school curriculum.32 Each item is categorized by domain (formal and informal) and activity type (recreational, physical, social, skill based, and self-improvement). Formal activities are activities involving rules or goals and are often structured by adults; informal activities are activities involving little or no prior planning and are often initiated by children. Examples of activities are presented in Table 3. For each activity, 5 dimensions of participation were measured: whether the activity was engaged in during the past 4 months and, if so, how often, with whom, where, and enjoyment from the activity (Appendix 1). The number of activities engaged in and the scores for the dimension “with whom” were analyzed in this study. Good reliability and validity of the CAPE have been documented.32,33
Measures of Youth Variables
The GMFCS is a 5-level system for classifying children with CP on the basis of functional abilities and limitations.34 The preliminary version of the 12- to 18-year age band of the expanded and revised GMFCS35 was used. There is evidence of content, construct, and discriminative validity and interrater reliability of the GMFCS.34,35 The interrater reliability of research assistants was examined in this study; an agreement of greater than 80% with the criterion rating was achieved.
A questionnaire was developed to obtain parent and youth information for the activity and participation study. Information about youths' developmental problems and educational placement was analyzed (Appendix 2). Parents reported whether their children had problems with learning, understanding, communication, and speech and, if the response was “yes,” indicated the extent to which the problems affected daily activities (1=not at all, 2=to a small extent, 3=to a moderate extent, 4=to a fairly great extent, and 5=to a great extent). The responses about learning and understanding were combined to represent cognition problems. The responses about communication and speech also were combined. If a youth had problems with both learning and understanding or with both speech and communication, the combined average score for the 2 questions was used for data analysis (Appendix 2). Parents also indicated whether their children attended a regular program in regular high school, a special program in regular high school, or a special high school; received home schooling; was undertaking postsecondary education; or did not attend school. Pilot work involving 12 parents was performed to ensure that the questions and response options were clear. Reliability and validity have not been formally evaluated.
The Coping Inventory is a 48-item measure of adaptive behavior in meeting personal needs and interacting with social environments.36 Three dimensions are measured: productive, the degree to which behaviors are socially responsible; active, the degree of task persistence; and flexible, the degree of adaptability. Each behavior was rated by parents on a 5-point scale (1=not effective, 2=minimally effective, 3=effective in some types of situations, 4=effective more often than not, and 5=consistently effective across situations). The full-scale Adaptive Behavior Index was used for analysis. On the basis of scores for the youths in this study, the internal consistency for all items of the Coping Inventory was .94.
Pediatric Outcomes Data Collection Instrument.
The Pediatric Outcomes Data Collection Instrument is a parent report measure of health and physical and mental functioning.37 The scores for each subscale range from 0 to 100, with higher scores indicating higher functioning. Three subscales were analyzed: Upper-Extremity Physical Function, Transfers/Mobility, and Sports and Physical Function. The correlation of the scores for the Upper-Extremity Physical Function subscale and the Transfers/Mobility subscale for youths in this study was high (r=.86); therefore, these scores were combined into a single mean score.
Measure of Family Variables: Family Environment Scale
The Family Environment Scale is a 90-item measure of family functioning.38 Parents indicated whether each statement was true or false for their families. Items are evenly divided among 10 subscales: Cohesion, Expressiveness, Conflict, Independence, Achievement Orientation, Intellectual-Cultural Orientation, Active-Recreational Orientation, Moral-Religious Emphasis, Organization, and Control. Items can be further grouped into 2 summary indexes, the Family Relationship Index and the Family Social Integration Index. Internal consistency was examined for subscales and summary indexes with our data. Two subscales, Cohesion and Conflict, and the Family Social Integration Index were selected for analysis on the basis of the criterion of a Cronbach alpha of greater than .60 for scores for the youths in this study. Higher scores for the Cohesion subscale indicated higher degrees of commitment and support that family members provided to one another. Higher scores for the Conflict subscale indicated higher levels of openly expressed anger and disagreement among family members. The Family Social Integration Index is the sum of scores for the Intellectual-Cultural Orientation, Active-Recreational Orientation, and Moral-Religious Emphasis subscales; higher scores indicated a higher degree of family social integration in the community.
Measures of Service Variables
A questionnaire was developed to measure the accessibility and coordination of health, educational, and community services for the activity and participation study. The responses to questions about needs for community recreational activities and school-based therapy services were analyzed (Appendix 3). First, parents were asked whether they, their children, or both had needs for the activities or services. If the response was “yes,” they indicated the extent to which they obtained the desired activities or services (1=none, 2=some, 3=most, and 4=all of the activities or services). If parents indicated no needs for community recreational activities or school-based therapy services, a score of 5 was entered for the extent to which they obtained the desired activities or services. Pilot work involving 12 parents was performed to ensure that the questions and response options were clear. Reliability and validity have not been formally evaluated.
Measure of Processes of Care.
The Measure of Processes of Care (20-item version)39 was used to measure parental perceptions of services delivered by health care professionals and organizations. Two scales, Providing General Information and Coordinated and Comprehensive Care, were selected for analysis on the basis of 2 perspectives: first, services that provide families with information about available and appropriate community programs should enhance youths' opportunities for participation in these programs; second, services that are coordinated and comprehensive should address all aspects of youths' needs, including needs for social participation. Parents were instructed to provide an overall rating of services for each item by using a 7-point scale (1=not at all, 2=to a very small extent, 3=to a small extent, 4=to a moderate extent, 5=to a fairly great extent, 6=to a great extent, and 7=to a very great extent); 0 points were assigned for items that were not applicable. Good reliability and validity have been reported.39
Data were collected by 1 to 3 research assistants in each hospital, and each session lasted 2 to 3 hours. Research assistants were mostly health care professionals experienced in serving children with CP and their families. Research assistants determined youths' GMFCS levels. Youths completed the CAPE in structured interviews; parental assistance or proxy was used as necessary. Of the 209 participating youths, 116 (56%) completed the CAPE independently and 48 (23%) received some assistance; for 45 youths (22%), parents completed the CAPE by proxy. Parents completed the remaining measures either on a computer or with paper and pencil.
Statistical analysis was performed with Predictive Analytics Software (version 17).* Descriptive statistics were used for all measures. For the CAPE, the number of activities engaged in with friends was the sum of the number of activities for which the score for the dimension “with whom” was “4=with friends.” The number of activities engaged in with others who were not family members was the sum of the number of activities for which the score for the dimension “with whom” was “5=with others (instructors, other people, or multiple types of people)” (Appendix 1).
Bivariate correlations were calculated to examine the association between each predictor variable and the number of activities engaged in with friends and with others who were not family members. Predictor variables that were significantly correlated with the outcome variables (P<.05) and of a magnitude of greater than or equal to .20 were included in the regression analysis. The criterion for the magnitude of the correlation reflected our intention for the amount of variance explained by each predictor variable to be clinically meaningful. Data for the outcome variables were skewed; therefore, nonparametric statistics were used. Spearman rank correlation coefficients were calculated for continuous and ordinal predictor variables, and point biserial correlation coefficients were calculated for dichotomous predictor variables.40
For the model of determinants of participation with friends, a sequential multiple regression analysis was performed to determine the best predictive combination of youth, family, and service variables. A sequential multiple regression analysis was selected on the basis of an ecological perspective that youth and family characteristics are more proximal factors influencing participation, whereas services (environmental characteristics) are more distal factors influencing participation.15–17 Data for 1 or more predictor variables were missing for 36 youths (17%). A regression analysis was performed on scores for the 173 youths for whom complete data were available. There were no differences in age, sex, or GMFCS level between youths with and youths without complete data. Natural logarithmic transformation was performed for 3 variables for which the data were substantially skewed. “Number of activities engaged in with friends” was positively skewed, with many youths engaging in a small number of activities. “Learning or understanding problems” and “communication or speech problems” were positively skewed, with many parents reporting no problems. There was a high correlation between GMFCS level and Upper-Extremity Physical Function and between GMFCS level and Transfers/Mobility (r=.88). Upper-Extremity Physical Function and Transfers/Mobility were selected for the regression analysis because the Pediatric Outcomes Data Collection Instrument subscales reflect specific aspects of physical function and are more highly correlated with activities engaged in with friends than GMFCS level.
To perform the sequential multiple regression analysis, youth variables were entered in the first block and service variables were entered in the second block. None of the correlations for family variables met the criteria for inclusion in the regression analysis (r≥.20, P<.05). Educational placement was coded as “special program in regular high school,” “special high school,” and “other,” with “regular program in regular high school ” as the referent for the analysis. “Other” included “home schooling” and “no school.” Because the number of youths who either did not attend school or received home schooling was small, the 2 categories were combined. Questions pertaining to community recreational activities and school-based therapies were entered as 2 variables: need for the activities or services (“yes” or “no”) and extent to which the desired activities or services were obtained. To form a parsimonious model, a predictor variable was retained in the model if the probability of the t test associated with a β coefficient was less than .05.
For the model of determinants of participation with others who were not family members, none of the correlations for predictor variables met the criteria for inclusion in the regression analysis. Therefore, predictor variables were respecified to include family organization, education, income, employment status, and number of children in the household. Family organization was measured with the Organization subscale of the Family Environment Scale, which indicates structure in planning family activities and responsibilities. The respecification was based on the hypotheses that youths are more likely to engage in formal activities with others who are not family members and that opportunities for participation in formal activities often depend on family organization and resources such as time, effort, and income. The respecified predictor variables were not examined for the outcome participation with friends on the basis of the hypothesis that activities engaged in with friends are usually informal activities that are initiated by youths or their friends.
Spearman rank correlation coefficients were calculated for the respecified variables. Data for 1 or more predictor variables were missing for 21 youths (10%). A simple linear regression analysis was performed on scores for the 188 youths for whom complete data were available. There were no differences in age, sex, or GMFCS level between youths with and youths without complete data.
Role of the Funding Source
Funding for this study was provided by Clinical Outcomes Study No. 9197, Shriners Hospitals for Children.
During the preceding 4 months, youths engaged in an average of 4.4 leisure activities with friends (SD=4.7, range=0–26) and 1.9 leisure activities with others who were not family members (SD=2.3, range=0–14). During this time, 46 youths (22%) did not engage in any activities with friends, and 62 youths (30%) did not engage in any activities with others who were not family members. The descriptive statistics for youth, family, and service variables are presented in Tables 1, 2, and 4, respectively.
Relationships Between Predictor and Outcome Variables
The bivariate correlations are presented in Table 5. The following factors were associated with youths engaging in more activities with friends: a lower GMFCS level, higher scores for the Upper-Extremity Physical Function and Transfers/Mobility subscales, a higher score for the Sports and Physical Function subscale, a higher score for adaptive behaviors, and a lesser extent to which problems with communication or speech and problems with learning or understanding affected daily activities. The magnitude of these correlations ranged from .33 to .56 (P<.001). Family conflict was correlated with engaging in more activities with friends (r=.17, P=.02), but the magnitude of the correlation did not meet the criteria for inclusion in the regression analysis. A higher extent to which the desired community recreational activities and school-based therapy services were obtained and a more inclusive educational setting were associated with engaging in more activities with friends. The magnitude of these correlations ranged from .30 to .38 (P<.001).
The following factors were associated with youths engaging in more activities with others who were not family members: a higher level of parental education (r=.25, P<.01) and family organization (r=.18, P=.01). The magnitude of the correlation for family organization did not meet the criteria for inclusion in the regression analysis.
Determinants of Activities Engaged in With Friends
The results of the multiple regression analysis are presented in Table 6. The full model of youth and service variables explained 45.8% of the variance in the number of activities engaged in with friends (F=11.26; df=12,160; P<.001). Youth variables were entered first and explained 40.2% of the variance (F=22.47; df=5,167; P<.001). Service variables explained an additional 5.6% of the variance (F change=2.35; df=7,160; P=.03). Youths who had higher scores for the Sports and Physical Function subscale (β=.25), who had communication or speech problems that affected daily activities to a lesser extent (β=−.18), and who obtained desired community recreational activities to a greater extent (β=.22) engaged in more activities with friends. Youths who attended a regular program in regular high school were more likely to engage in activities with friends than youths in a special program in regular high school (β=−.21) or youths who received home schooling or did not attend school (β=−.16).
Determinants of Activities Engaged in With Others Who Were Not Family Members
The simple regression analysis revealed that parental education explained a small but significant amount (6.3%) of the variance in the number of activities engaged in with others who were not family members (F=12.50; df=1,186; P=.001). A higher level of parental education (β=.25, P=.001) was the sole determinant of youths engaging in more activities with others who were not family members.
Youths with CP participated in a small proportion of activities on the CAPE with people outside the family. Previously we reported that this cohort participated in a mean of 18.5 to 24.5 of the 55 activities on the CAPE14; means of 4.4 and 1.9 activities were engaged in with friends and others who were not family members, respectively. Within the framework of the International Classification of Functioning, Disability and Health,3 the desire for social participation is a personal construct. Consequently, engaging in more activities on the CAPE should not be assumed to be a desired outcome for all youths. For some youths with CP, participation in a small number of activities with friends and others may reflect their choices to focus on specific activities that they like or their preferences for family and solitary activities.
Several limitations of the present study should be considered in an interpretation of the results. The operational definition of social participation only reflects how many activities were participated in and with whom. Time constraints did not allow youths to complete the Preferences for Activities of Children,32 a companion measure for the CAPE. This companion measure would have enabled an analysis of the types of activities that the youths preferred. Furthermore, we do not know the extent to which youths were actively engaged in a contextually appropriate manner in their activities with friends and others or the quality of their interactions.
The results suggest that youths who are more competent in recreational activities, sports, and communication are able to engage in a greater variety of activities with friends. Previous studies indicated that greater mobility, functional abilities, and communication skills may enhance choices and opportunities for social activities among adolescents and young adults with CP.41,42 Our previous study also suggested that self-sufficient mobility and some ability to run and jump may enable social participation in recreational and leisure activities for children and youths with CP.13
The extent to which youths obtained the desired community recreational activities was associated with their social participation with friends, over and above the influence of youth characteristics. Community recreation and leisure programs provide youths with opportunities to establish friendships and social networks. Participation in group activities enables adolescents to experience team cooperation and develop peer attachment.18 Further research is recommended to understand the types, formats, and structures of community activities that optimize the social interactions of youths with CP.
The finding that youths in regular educational programs were more likely to engage in activities with their friends than those in special educational programs most likely can be attributed to several factors. One factor is related to youth characteristics. In our sample, youths in regular educational programs had higher levels of physical, cognitive, and communicative functioning, which may be related to their engaging in more activities with friends. Another factor is the support of classmates and friends, which may also influence social participation.33 Although inclusion is thought to facilitate social interactions,29,30 youths with disabilities have reported mixed feelings regarding social experiences in inclusive settings.43 Among 33 adolescents who were 11 to 16 years old, who had illnesses or disabilities, and who attended regular schools, more than half reported difficulties in interacting with their peers without disabilities; 5 reported positive experiences, such as being helped by their peers.43
Our finding that family characteristics were not associated with the social participation of youths with CP may reflect a developmental perspective. Youths may be more independent than children in arranging activities with friends, and the family may have less influence on their participation with peers. Our finding is not consistent with those of other studies, in which family cohesion, communication, activity preferences, and income were predictors of leisure participation.16,20 The discrepancy may reflect our particular focus on the number of activities that youths engaged in with their friends, whereas other studies16,20 focused on the intensity of participation in formal and informal activities for children with disabilities. Furthermore, choosing whether or not to participate with friends may not simply depend on personal or family preferences. Social participation may be influenced by social and attitudinal factors that are beyond the control of individual youths and families, such as attitudes, values, and support of people in the community, although we did not examine this possibility in the present study.44
Social participation with others who were not family members was associated with parental education but not with youth and service characteristics. This finding may reflect parents' knowledge of and ability to access organized recreational activities45 regardless of their children's abilities and resource barriers. Compared with activities engaged in with friends, activities involving adult instructors or coaches, such as dance or swimming lessons, often require more planning by and assistance from family members. A higher level of parental education has been reported to be associated with a higher level of participation in organized activities for children with Down syndrome.25 In addition, educational attainment may be related to parental competence in using electronic and print media to locate and access community resources. A higher level of parental knowledge regarding leisure activities has been found to positively affect adolescents' experiences with and interests in leisure activities.46
Youth and service characteristics were determinants of social participation with friends but not with others who were not family members. The finding may reflect a difference in the types of activities engaged in with friends versus others who are not family members. Informal activities are defined as voluntary activities involving little or no planning and are often initiated by youths, whereas formal activities are defined as structured activities involving rules or goals and are often organized by adults. In the present study, 75% of informal activities were engaged in with friends and 25% were engaged in with others; 32% of formal activities were engaged in with friends and 68% were engaged in with others. These data suggest that physical, communication, and social skills may be especially important for participation in informal activities with friends, for which formal support and assistance are not provided. In comparison, youths more often engaged in more formal activities with others than with friends. During formal activities, adults such as instructors and coaches may be a source of support that enables participation by making accommodations and adaptations based on youths' abilities. Physical, cognitive, and communicative functioning was found to predict informal participation more strongly than formal participation for children with disabilities.16 Similarly, sex, manual ability, and gross motor function were found to predict diversity of participation in informal activities for children with CP, whereas none of the child characteristics was found to predict participation in formal activities.47
Implications for Physical Therapy
The results suggest that physical therapists should address the goals and wishes for social participation of adolescents and young adults with CP through collaborative and meaningful goal setting as well as service planning and provision. Services and interventions that promote sports and physical and communication abilities may enhance social opportunities with friends. Physical therapists are encouraged to actively involve youths with CP in planning and engaging in sports and recreational activities based on their interests. Organized sports and physical activities provide a social context in which youths experience team cooperation and build supportive networks.11,48 Therapists can involve youths in identifying goals and analyzing the skills needed for activities and can develop instructions and interventions. With appropriate instruction and practice, youths may improve their sports and physical activity skills, enabling active participation. Therapists can also involve youths and families in addressing barriers to participation. Strategies may involve sharing information, consulting, and coordinating with program instructors, coaches, and team members.
Physical therapists are encouraged to address the communication skills needed for successful social participation in desired activities. Effective communication enables youths to express their wishes and interact with others. Moreover, youths with CP may have special requirements regarding physical management and activity adaptations during sports, club, or group activities and need to communicate these to others. Physical therapists can assist with identifying difficulties in communication specific to the desired activities and then collaborate with speech therapists to provide interventions.49 Physical therapists can also provide information about augmentative and alternative communication systems and training programs to help youths achieve independence during social interactions.49
Health care professionals, including physical therapists, have an important role as advocates for the social and community participation of youths with CP and their families. Thomas and Rosenberg50 suggested that the skills and knowledge required for community-based pediatric physical and occupational therapists to successfully promote community participation involve assessment, ongoing consultation or assistance, intervention, and continued education. Therapists are encouraged to identify physical, social or attitudinal, and service barriers to participation by using standard measures or individual in-depth interviews. Therapists should be aware that a lack of information, a lack of facilities nearby, a lack of availability and accessibility of programs, and high cost and time demands were frequently cited barriers to community participation.46,51 Effective strategies to promote opportunities for community participation could be developed on the basis of a comprehensive assessment of the strengths, abilities, and challenges of individual youths and families.
Therapists are encouraged to apply their knowledge and expertise to developing consultation and intervention plans that are feasible and helpful. Strategies to promote community participation include recommendations for meaningful activities and resources that fit individual abilities and interests, interventions for the development of skills and the use of assistive technology, consultations regarding accommodations and environmental modifications, suggestions for transportation, and education for staff of community facilities.50,52,53
Further research is recommended to identify the structures and processes of physical therapy services that promote successful social participation by youths with CP. We perceive successful social participation as a person's physical (engaging in), social (belonging), and psychological (being) involvement in desired activities. Therapists have a unique role in providing supports and services to optimize abilities in sports and physical activities, communication skills, and community opportunities. Clinical trials are needed to determine the effectiveness of participation-based interventions in optimizing the social and community participation of youths with CP.
The Bottom Line
What do we already know about this topic?
Youths with cerebral palsy have been reported to participate mainly in home-based leisure and recreational activities and have limited social opportunities with friends and other persons outside the family.
What new information does this study offer?
Increased levels of social participation with friends were associated with higher levels of sports and physical functioning, fewer problems with communication or speech, a more inclusive education program, and a greater ability to participate in desired community recreational activities. Youths with cerebral palsy engaged in more activities with others outside their family if their parents had a higher level of education.
If you're a patient, what might these findings mean for you?
Youths with disabilities are encouraged to express their goals and wishes for social participation and their need for support from their therapists and other service providers. Physical therapists can support the social needs of youths with disabilities by helping them to make the most of their sports, physical, and communication abilities; promoting community opportunities; and enhancing parents' knowledge of resources.
Dr Kang, Dr Palisano, Dr Orlin, Dr Chiarello, and Dr King provided concept/idea/research design. Dr Kang, Dr Palisano, Dr Orlin, and Dr Chiarello providing writing. Dr Orlin and Dr Chiarello provided data collection. Dr Kang, Dr Palisano, Dr Orlin, and Dr Polansky provided data analysis. Dr Palisano provided project management and fund procurement. Dr Orlin, Dr Chiarello, Dr King, and Dr Polansky provided consultation (including review of manuscript before submission).
This research was completed in partial fulfillment of Dr Kang's PhD in rehabilitation sciences.
The authors acknowledge the following study coinvestigators: Donna Oeffinger, PhD, Chester Tylkowski, MD, George Gorton, MS, Richard Stevenson, MD, Mark Abel, MD, Lawrence Vogel, MD, Caroline Anderson, PhD, and James Sanders, MD. Special thanks are due to the site coordinators and the youths and families who participated in this study.
Study approval was provided by the institutional review board at each hospital.
A platform presentation of this research was given at the Combined Sections Meeting of the American Physical Therapy Association; February 17–20, 2010; San Diego, California.
Funding for this study was provided by Clinical Outcomes Study No. 9197, Shriners Hospitals for Children.
↵* SPSS Inc, 233 S Wacker Dr, Chicago, IL 60606.
- Received February 2, 2010.
- Accepted July 16, 2010.
- © 2010 American Physical Therapy Association