Research Report Determinants of Social Participation— With Friends and Others Who Are Not Family Members—for Youths With Cerebral Palsy
L.-J. Kang, PT, PhD, was a doctoral candidate in the Department of Physical Therapy and Rehabilitation Sciences, College of Nursing and Health Professions, Drexel University, Mail Stop 502, 245 N 15th St, Philadelphia, PA 19102-1192 (USA), when this study was completed. Address all correspondence to Dr Kang at: lydiakang1003@gmail. com.
Lin-Ju Kang, Robert J. Palisano, Margo N. Orlin, Lisa A. Chiarello, Gillian A. King, Marcia Polansky
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 and 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.
R.J. Palisano, PT, ScD, is Professor, Department of Physical Therapy and Rehabilitation Sciences, College of Nursing and Health Professions, Drexel University, and member of the scientific staff, Shriners Hospitals for Children, Philadelphia, Pennsylvania. M.N. Orlin, PT, PhD, is Associate Professor, Department of Physical Therapy and Rehabilitation Sciences, College of Nursing and Health Professions, Drexel University, and member of the scientific staff, Shriners Hospitals for Children, Philadelphia. L.A. Chiarello, PT, PhD, PCS, is Associate Professor, Department of Physical Therapy and Rehabilitation Sciences, College of Nursing and Health Professions, Drexel University, and member of the scientific staff, Shriners Hospitals for Children, Philadelphia. G.A. King, PhD, is Senior Scientist, Bloorview Research Institute, Toronto, Ontario, Canada. M. Polansky, ScD, MSW, is Associate Professor, Department of Epidemiology and Biostatistics, School of Public Health, Drexel University. [Kang L-J, Palisano RJ, Orlin MN, et al. Determinants of social participation—with friends and others who are not family members— for youths with cerebral palsy. Phys Ther. 2010;90:xxx–xxx.] © 2010 American Physical Therapy Association Post a Rapid Response to this article at: ptjournal.apta.org
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Determinants of Social Participation for Youths With Cerebral Palsy
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articipation creates avenues to form friendships, develop a selfconcept, 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 realworld 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. 2
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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 selfimprovement 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
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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.
Method Participants The participants were 209 youths who were 13 to 21 years old and had December 2010
Determinants of Social Participation for Youths With Cerebral Palsy 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 December 2010
Table 1. Descriptive Statistics for Youth Demographics and Other Youth Variablesa Youth Characteristic or Variable
No.
%
Age group (n⫽209) Adolescent (13–16 y)
137
65.6
72
34.4
Male
108
51.7
Female
101
48.3
142
68.0
African American
21
10.0
Hispanic or Latino
21
10.0
Other
25
12.0
I: Walk without restrictions
54
25.8
II: Walk with restrictions
57
27.3
Young adult (17–21 y) Sex (n⫽209)
Race (n⫽209) White
GMFCS level (n⫽209)
III: Walk with assistive devices
33
15.8
IV: Limited self-mobility
26
12.4
V: Severely limited posture or self-mobility
39
18.7
89
45.6
106
54.4
Problems with learning or understanding (n⫽195) No problems Problems If have problems, extent to which daily activities were affected (median)
3
Problems with communication or speech (n⫽195) No problems Problems If have problems, extent to which daily activities were affected (median)
113
57.9
82
42.1
3
Scores on subscales of the PODCI (n⫽191) Upper-Extremity Physical Function and Transfers/Mobility
58.5b
34.4c
Sports and Physical Function
35.7b
27.7c
3.93b
Adaptive Behavior Index (n⫽181)
0.75c
a
Reported as number (percent) of participants unless otherwise indicated. PODCI⫽Pediatric Outcomes Data Collection Instrument. b Mean. c Standard deviation.
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
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Determinants of Social Participation for Youths With Cerebral Palsy Table 2. Descriptive Statistics for Family Demographics and Family Environment Scalea,38 Family Characteristic or Variable
No.
%
Caregiver respondent (n⫽194) Mother
151
77.8
Father
25
12.9
Grandmother
12
6.2
6
3.1
Other Parental education (n⫽192) Less than high school
11
5.7
High school
84
43.8
Some college or associate degree
57
29.7
Bachelor’s degree
29
15.1
Graduate degree
11
5.7
Full time
82
43.4
Part time
39
20.6
Not employed
68
36.0
⬍$29,999
50
28.4
$30,000–$59,999
52
29.5
$60,000–$99,999
46
26.2
ⱖ$100,000
28
15.9
1
64
33.9
2
64
33.9
3
40
21.2
4 or more
21
11.0
Employment (n⫽189)
Family income (n⫽176)
Children in the household (n⫽189)
Family Environment Scale (n⫽183) Cohesion
7.3b
1.8c
Conflict
2.6b
2.1c
b
1.9c
19.6b
4.2c
Organization
6.4
Family Social Integration Index a
Reported as number (percent) of participants unless otherwise indicated. Mean. c Standard deviation. b
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 GMFCS. The GMFCS is a 5-level system for classifying children with CP on the basis of functional abilities and limitations.34 The preliminary 4
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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.
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Demographic questionnaire. 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. Coping Inventory. 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 effecDecember 2010
Determinants of Social Participation for Youths With Cerebral Palsy tive 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, IntellectualCultural 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 anDecember 2010
Table 3. Examples of Activities for Each Type and Domain of the Children’s Assessment of Participation and Enjoyment32 Formal Domain (15 Items)
Type Recreational (12 items)
Informal Domain (40 Items)
None
Playing board or card games Watching television or a rented movie Going for a walk or hike
Physical (13 items)
Social (10 items)
Participating in martial arts
Bicycling, skating, or skateboarding
Racing or track and field
Participating in water (or snow) sports
Participating in team sports
Playing non–team sports
None
Talking on the phone Going to a party Going to a live event
Skill based (10 items)
Swimming
Dancing
Learning to sing Playing a musical instrument Self-improvement (10 items)
Participating in religious activities
Reading
Getting extra help with schoolwork from a tutor
Going to a public library Doing a chore
other. 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 IntellectualCultural 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 Service questionnaire. 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 schoolbased 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
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Determinants of Social Participation for Youths With Cerebral Palsy 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 Procedure 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. Data Analysis 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 * SPSS Inc, 233 S Wacker Dr, Chicago, IL 60606.
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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
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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). UpperExtremity 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 (rⱖ.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 December 2010
Determinants of Social Participation for Youths With Cerebral Palsy probability of the t test associated with a  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.
Results During the preceding 4 months, youths engaged in an average of 4.4 leisure activities with friends December 2010
Table 4. Descriptive Statistics for Educational Placement and Service Variablesa Service Variable
No.
%
Educational placement (n⫽193) Regular program in regular high schoolb
79
41.0
Special program in regular high school
68
35.2
Special high school
23
11.9
23
11.9
Other
c
Community recreational activities (n⫽192) No needs Have needs If have needs, extent to which activities were obtained (median)
71
37.0
121
63.0
2.0
School-based therapy services (n⫽193) No needs Have needs If have needs, extent to which services were obtained (median)
62
32.1
131
67.9
3.0
Measure of Processes of Care Providing General Information (n⫽187) Coordinated and Comprehensive Care (n⫽183)
3.9d
2.0e
d
1.5e
5.1
a
Reported as number (percent) of participants unless otherwise indicated. Regular program in regular high school includes postsecondary education (n⫽12). Other includes no school (n⫽11) and home schooling (n⫽12). d Mean. e Standard deviation. b c
(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)
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Determinants of Social Participation for Youths With Cerebral Palsy Table 5. Correlations Between Predictor Variables and Number of Activities Engaged in With Friends and With Others Who Were Not Family Members (Others)a
Predictor Variables
No. of Participants
Outcome Variables: No. of Activities Engaged in With Friends
Others
.08
Youth Age (rpb)
209
.07
Sex (rpb)
209
⫺.01 ⫺.45
.11 b
GMFCS level (rs)
209
Upper-Extremity Physical Function and Transfers/Mobility subscales of the PODCI (rs)
191
.55b,c
⫺.12
.12
Sports and Physical Function subscale of the PODCI (rs)
191
.56b,c
⫺.06
Adaptive Behavior Index (rs)
181
.33b,c
⫺.10
Problems with communication or speech (rs)
195
⫺.52
Problems with learning or understanding (rs)
195
⫺.37b,c
⫺.03
183
⫺.01
⫺.02
b,c
.02
Family Cohesion (rs)
b
Conflict (rs)
183
.17
Family Social Integration Index (rs)
183
.05
.04
Organizationd (rs)
183
N/A
.18b
Parental educationd (rs)
188
N/A
.25b,c
d
.03
Family income (rs)
173
N/A
.10
Employment statusd (rs)
189
N/A
⫺.01
No. of children in householdd (rs)
191
N/A
.01
Extent to which community recreational activities were obtained (rs)
192
.30b,c
⫺.03
Extent to which school-based therapy services were obtained (rs)
192
.34b,c
⫺.03
Coordinated and Comprehensive Care subscale of the Measure of Processes of Care (rs)
183
.11
⫺.16b
Providing General Information subscale of the Measure of Processes of Care (rs)
187
.02
⫺.03
Educational placement (rs)
193
.38b,c
⫺.07
Service
rpb⫽point biserial correlation coefficient, GMFCS⫽Gross Motor Function Classification System, rs⫽Spearman rank correlation coefficient, PODCI⫽Pediatric Outcomes Data Collection Instrument, N/A⫽not analyzed. P⬍.05. c Predictor variable included in the regression analysis. d Respecified predictor variable for number of activities engaged in with others. a
b
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 ser8
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vice 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
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Physical Function subscale (⫽.25), who had communication or speech problems that affected daily activities to a lesser extent (⫽⫺.18), and who obtained desired community recreational activities to a greater extent (⫽.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 December 2010
Determinants of Social Participation for Youths With Cerebral Palsy Table 6. Sequential Multiple Regression Analysis for Diversity of Activities Engaged in With Friends (n⫽173) Model Youth
Standardized 
Predictor Variable Upper-Extremity Physical Function and Transfers/Mobility subscales of the PODCI
a
Sports and Physical Function subscale of the PODCI Adaptive Behavior Index
Service
t
P
.11
0.89
.38
.25
2.39
.02
.03
0.42
.68
Problems with communication or speech
⫺.18
⫺2.1
Problems with learning or understanding
⫺.06
⫺0.76
.47
.16
1.56
.12
Need for community recreational activities Extent to which community recreational activities were obtained
.04
.22
2.02
.04
Need for school-based therapy services
⫺.08
⫺0.79
.43
Extent to which school-based therapy services were obtained
⫺.05
⫺0.53
.60
⫺.21
⫺2.59
.01
Educational placement Regular program in regular high school (referent) Special program in regular high school
a
Special high school
⫺.04
⫺0.51
.61
Other
⫺.16
⫺2.44
.02
PODCI⫽Pediatric Outcomes Data Collection Instrument.
youths in a special program in regular high school (⫽⫺.21) or youths who received home schooling or did not attend school (⫽⫺.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 (⫽.25, P⫽.001) was the sole determinant of youths engaging in more activities with others who were not family members.
Discussion 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 December 2010
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
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Determinants of Social Participation for Youths With Cerebral Palsy 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 stud10
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ies16,20 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
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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 December 2010
Determinants of Social Participation for Youths With Cerebral Palsy 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.
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.
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
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
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 December 2010
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. 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. This article was submitted February 2, 2010, and was accepted July 16, 2010. DOI: 10.2522/ptj.20100048
References 1 Barletta A, Loy DP. The experience of participation in challenger little league through the eyes of a child with physical disability. American Journal of Recreation Therapy. 2006;5:6 –12. 2 Specht J, King G, Brown E, Foris C. The importance of leisure in the lives of persons with congenital physical disabilities. Am J Occup Ther. 2002;56:436 – 445. 3 International Classification of Functioning, Disability and Health: ICF. Geneva, Switzerland: World Health Organization; 2001. 4 Colver A, SPARCLE Group. Study protocol: SPARCLE—a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy. BMC Public Health. 2006;6:105. 5 Chen H-F, Cohen ES. Social participation for children with developmental coordination disorder: conceptual, evaluation and intervention considerations. Phys Occup Ther Pediatr. 2003;23:61–78. 6 Richardson P. From roots to wings: social participation for children with physical disabilities. Dev Disabil Spec Interest Sect Q. 2003;26:1– 4.
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Determinants of Social Participation for Youths With Cerebral Palsy 7 Bandura A. Social Foundations of Thought and Action: A Social Cognitive Theory. Englewood Cliffs, NJ: Prentice Hall; 1986. 8 Brollier C, Shepherd J, Markley KF. Transition from school to community living. Am J Occup Ther. 1994;48:346 –353. 9 Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil. 1987;68:828 – 832. 10 Stevenson CJ, Pharoah PO, Stevenson R. Cerebral palsy: the transition from youth to adulthood. Dev Med Child Neurol. 1997;39:336 –342. 11 Poulsen AA, Ziviani JM, Cuskelly M, Smith R. Boys with developmental coordination disorder: loneliness and team sports participation. Am J Occup Ther. 2007;61: 451– 462. 12 Adamson L. Self-image, adolescence, and disability. Am J Occup Ther. 2003;57: 578 –581. 13 Palisano RJ, Kang LJ, Chiarello LA, et al. Social and community participation of children and youth with cerebral palsy is associated with age and gross motor function classification. Phys Ther. 2009;89: 1304 –1314. 14 Orlin MN, Palisano RJ, Chiarello LA, et al. Participation in home, extracurricular, and community activities among children and young people with cerebral palsy. Dev Med Child Neurol. 2010;52:160 –166. 15 Bronfenbrenner U, Ceci SJ. Nature-nurture reconceptualized in developmental perspective: a bioecological model. Psychol Rev. 1994;101:568 –586. 16 King G, Law M, Hanna S, et al. Predictors of the leisure and recreation participation of children with physical disabilities: a structural equation modeling analysis. Child Health Care. 2006;35:209 –234. 17 King G, Law M, King S, et al. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23:63–90. 18 McGee R, Williams S, Howden-Chapman P, et al. Participation in clubs and groups from childhood to adolescence and its effects on attachment and self-esteem. J Adolesc. 2006;29:1–17. 19 King G, Law M, Hurley P, et al. A developmental comparison of the out-of-school recreation and leisure activity participation of boys and girls with and without physical disabilities. International Journal of Disability, Development and Education. 2010; 57:77–107. 20 Law M, King G, King S, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol. 2006;48:337–342. 21 Zeitlin S, Williamson GG. Coping in Young Children: Early Intervention Practices to Enhance Adaptive Behavior and Resilience. Baltimore, MD: Paul H Brookes Publishing; 1994. 22 Reijntjes A, Stegge H, Terwogt MM. Children’s coping with peer rejection: the role of depressive symptoms, social competence, and gender. Infant Child Dev. 2006;15:89 –107.
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23 Imms C, Reilly S, Carlin J, Dodd K. Diversity of participation in children with cerebral palsy. Dev Med Child Neurol. 2008; 50:363–369. 24 Bennett KS, Hay DA. The role of family in the development of social skills in children with physical disabilities. International Journal of Disability, Development and Education. 2007;54:381–397. 25 Sloper P, Turner S, Knussen C, Cunningham C. Social life of school children with Down’s syndrome. Child Care Health Dev. 1990;16:235–251. 26 King S, Teplicky R, King G, Rosenbaum P. Family-centered service for children with cerebral palsy and their families: a review of the literature. Semin Pediatr Neurol. 2004;11:78 – 86. 27 Mihaylov SI, Jarvis SN, Colver AF, Beresford B. Identification and description of environmental factors that influence participation of children with cerebral palsy. Dev Med Child Neurol. 2004;46:299 –304. 28 Baker K, Donelly M. The social experiences of children with disability and the influence of environment: a framework for intervention. Disabil Soc. 2001;16:71– 85. 29 Miller KJ, Fullmer SL, Walls RT. A dozen years of mainstreaming literature: a content analysis. Exceptionality. 1996;6: 99 –109. 30 Kennedy CH, Shukla S, Fryxell D. Comparing the effects of educational placement on the social relationships of intermediate school students with severe disabilities. Except Child. 1997;64:31– 47. 31 Stanovich PJ, Jordan A, Perot J. Relative differences in academic self-concept and peer acceptance among students in inclusive classrooms. Rem Spec Educ. 1998;19: 120 –126. 32 King G, Law M, King S, et al. Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment Inc; 2004. 33 King G, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child Care Health Dev. 2006;33:28 –39. 34 Palisano RJ, Rosenbaum P, Walter S, et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39:214 –223. 35 Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008;50:744 –750. 36 Zeitlin S. Coping Inventory: A Measure of Adaptive Behavior. Bensenville, IL: Scholastic Testing Service; 1985. 37 Daltroy LH, Liang MH, Fossel AH, Goldberg MJ. The POSNA Pediatric Musculoskeletal Functional Health Questionnaire: report on reliability, validity, and sensitivity to change. J Pediatr Orthop. 1998;18: 561–571.
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38 Moos RH, Moos BS. A Social Climate Scale: Family Environment Scale Manual—Development, Applications, Research. 3rd ed. Palo Alto, CA: Mindgarden Inc; 2002. 39 King S, King G, Rosenbaum P. Evaluating health service delivery to children with chronic conditions and their families: development of a refined Measure of Processes of Care (MPOC-20). Child Health Care. 2004;33:35–57. 40 Field A. Discovering Statistics Using SPSS. 2nd ed. London, United Kingdom: Sage Publications; 2005. 41 Shikako-Thomas K, Majnemer A, Law M, Lach L. Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review. Phys Occup Ther Pediatr. 2008;28:155–169. 42 Wiegerink DJ, Roebroeck ME, Donkervoort M, et al. Social and sexual relationships of adolescents and young adults with cerebral palsy: a review. Clin Rehabil. 2006; 20:1023–1031. 43 Lightfoot J, Wright S, Sloper P. Supporting pupils in mainstream school with an illness or disability: young people’s views. Child Care Health Dev. 1999;25:267–283. 44 Law M, Haight M, Milroy B, et al. Environmental factors affecting the occupations of children with physical disabilities. J Occup Sci. 1999;6:102–110. 45 Antle BJ, Mills W, Steele C, et al. An exploratory study of parents’ approaches to health promotion in families of adolescents with disabilities. Child Care Health Dev. 2007;34:185–193. 46 Sharp EH, Caldwell LL, Graham JW, Ridenour TA. Individual motivation and parental influence on adolescents’ experiences of interest in free time: a longitudinal examination. J Youth Adolescence. 2006;35: 359 –372. 47 Imms C, Reilly S, Carlin J, Dodd KJ. Characteristics influcing participation of Australian children with cerebral palsy. Disabil Rehabil. 2009;31:2204 –2215. 48 Allender S, Cowburn G, Foster C. Understanding participation in sport and physical activity among children and adults: a review of qualitative studies. Health Educ Res. 2006;21:826 – 835. 49 Pennington L, Goldbart J, Marshall J. Speech and language therapy to improve the communication skills of children with cerebral palsy. Cochrane Database Syst Rev. 2004;2:CD003466. 50 Thomas AD, Rosenberg A. Promoting community recreation and leisure. Pediatr Phys Ther. 2003;15:232–246. 51 A Portrait of Persons With Disabilities. Ottawa, Ontario, Canada: Statistics Canada; 1995. 52 Magill-Evans J, Darrah J, Adkins R. Youths with cerebral palsy and their satisfaction with recreational services: implications for inclusion. Leisure. 2003/2004;28:71– 86. 53 Rimmer JH, Riley B, Wang E, et al. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med. 2004;26:419 – 425.
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Determinants of Social Participation for Youths With Cerebral Palsy Appendix 1. Scoring for Each Dimension of Participation on the Children’s Assessment of Participation and Enjoyment32 Dimension
Question
Scoring
Activity done?
In the past 4 mo, have you done this activity?
0 No 1 Yes
How often?
How often have you done this activity in the past 4 mo?
1 2 3 4 5 6 7
Once/4 mo Twice/4 mo Once/wk Two or 3 times/mo Once/wk Two or 3 times/wk Once/d
With whom?
With whom do you do this activity most often?
1 2 3 4 5
Alone With family With other relatives With friends With others (instructors, others people, or multiple types of people)
Where?
Where do you do this activity most often?
1 2 3 4 5 6
Home Relative’s home In your neighborhood At school In your community Beyond your community
Enjoyment?
How much do you like or enjoy doing this activity?
1 2 3 4 5
Not at all Somewhat or sort of Pretty much Very much Love it
Appendix 2. Questions Analyzed on the Demographic Questionnairea Does Your Child’s Problem Affect His or Her Daily Activities?
Problem Area Communication
Does Your Child Have a Problem in This Area? ▫ NO
▫ YES
Not At All
To a Small Extent
To a Moderate Extent
To a Fairly Great Extent
To a Great Extent
1
2
3
4
5
Speech
▫ NO
▫ YES
1
2
3
4
5
Understanding
▫ NO ▫ YES
1
2
3
4
5
Learning
▫ NO
1
2
3
4
5
▫ YES
a
Calculation of scores (eg, for problems with communication or speech): if a parent reported no problems with both communication and speech, then the score was 0; if a parent reported no problem with communication (score⫽0) and a problem with speech that affected a child’s daily activities to a small extent (score⫽2), then the score was 2; and if a parent reported a problem with communication that affected a child’s daily activities to a small extent (score⫽2) and a problem with speech that affected a child’s daily activities to a fairly great extent (score⫽4), then the score was 3.
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Determinants of Social Participation for Youths With Cerebral Palsy Appendix 3. Questions Analyzed on the Service Questionnaire
1a. In the past 12 mo, did you (and/or your child) want any community recreational and/or religious activities (such as play groups, dance/swim sessions, camps, clubs, sports, and church activities)? ❏ 1⫽Yes (answer 1b)
❏ 0⫽No (go to question 2a)
1b. To what extent have you or your child received the community recreational and/or religious activities that you or your child wanted? ❏ 4⫽All of the activities ❏ 3⫽Most of the activities ❏ 2⫽Some of the activities ❏ 1⫽None of the activities
2a. In the past 12 mo, did your child have therapy needs at school requiring the services of a physical, occupational, or speech therapist? ❏ 1⫽Yes (answer 2b)
❏ 0⫽No
2b. To what extent has your child received the school-based therapy services that he or she needed? ❏ 4⫽All of the services ❏ 3⫽Most of the services ❏ 2⫽Some of the services ❏ 1⫽None of the services
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