http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–13 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.882417

RESEARCH PAPER

Child engagement in daily life: a measure of participation for young children with cerebral palsy Disabil Rehabil Downloaded from informahealthcare.com by University Of Wisconsin Madison on 09/11/14 For personal use only.

Lisa A. Chiarello1, Robert J. Palisano1, Sarah Westcott McCoy2, Doreen J. Bartlett3, Audrey Wood4, Hui-Ju Chang1, Lin-Ju Kang5, and Lisa Avery6 1

Department of Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA, USA, 2Department of Rehabilitation Medicine, University of Washington, Seattle, Washington DC, USA, 3School of Physical Therapy, Western University, London, Ontario, Canada, 4The Children’s Hospital of Philadelphia, Philadelphia, PA, USA, 5Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, Kwei-Shan, Taiwan, and 6Avery Information Systems, Peterborough, Ontario, Canada Abstract

Keywords

Purpose: The objectives of this study were to determine the: (1) internal consistency and test– retest reliability of the Child Engagement in Daily Life measure; (2) construct validity of the measure (known groups methods), that is, the ability of the measure to discriminate participation in family and recreational activities and self-care among young children of varying age and motor ability and between children with and without cerebral palsy, and (3) stability and hierarchical ordering of the items for young children with CP to devise an interval-level scoring system. Methods: 429 children with CP and their parents and 110 parents of children without CP participated in this methodological study. Parents completed the Child Engagement in Daily Life measure and therapists assessed the children’s gross motor function. Rasch analysis was used to create an interval-level measure. Results: Children’s frequency in and enjoyment of participation in family and recreational activities and self-care varied by age and gross motor ability. Internal consistency of the domains of the measure was high, Cronbach alpha values ranging from 0.86 to 0.91; test–retest for participation in family and recreational activities was acceptable, ICC ¼ 0.70, and in self-care was high, ICC ¼ 0.96. The items in the measure had a good fit and a logical hierarchical ordering. Conclusion: Study results support the validity and reliability of the Child Engagement in Daily Life measure as an assessment of participation in family and recreational activities and self-care for young children with CP.

Cerebral palsy, measurement, participation, self-care History Received 28 April 2013 Revised 5 December 2013 Accepted 10 December 2013 Published online 28 January 2014

ä Implications for Rehabilitation  

Participation in family and recreational activities and self-care for young children with cerebral palsy can be reliably and validly assessed using the Child Engagement in Daily Life measure. Service providers are encouraged to support young children’s participation in family and recreational activities and self-care.

Participation in daily life activities is a primary outcome of rehabilitation services for young children with disabilities. Participation is a complex construct, broadly defined in the International Classification of Functioning, Disability, and Health (ICF), as involvement in life situations [1]. In order to support participation, rehabilitation providers are challenged to define what participation is for young children. Research in early intervention has focused on identifying the various family and community activities in which young children participate [2]. These activities include family routines (household chores and errands), caregiving routines (bathing, dressing, eating, grooming, bedtime), family rituals and celebrations (holidays, birthdays,

Address for correspondence: Lisa A. Chiarello, Department of Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA 215-762, USA. E-mail: [email protected]

religious events), outdoor activities (gardening, visits to park/ zoo), social activities (visiting friends, play groups), play activities (physical play and play with toys) and learning activities (listening to stories, looking at books/pictures). Of these family and community activities, self-care and play are considered the primary occupations of young children. Selfcare is fundamental for daily life [3] and parents identified selfcare as the most frequent priority for activity and participation for children with cerebral palsy (CP) [4]. McConachie et al. [5] have recommended that self-care, an important life situation, be included in instruments measuring participation in children. In addition, adolescents with CP, parents, and health care professionals identified self-care as one of the eight domains most important to measure when evaluating the effects of intervention [6]. Play and participation in recreation and leisure activities give children the opportunities to have fun, be with others, and make friends. The World Health Organization [1] considers engaging in

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play to be a major life area for children. Health care and education professionals advocate for the importance of play for enhancing child development, providing a sense of mastery, confirming selfconcept, and promoting relationships [7–9]. CP is a complex condition characterized by wide variation in motor function. In addition to the disorder in development of posture and movement, children with CP often have limitations in sensation, perception, cognition, communication, behavior and other health conditions that influence activity and participation [10]. Specifically it is known that young children with CP have lower self-care abilities than children without disabilities [11] and young children with CP with limited self-mobility have a lower intensity of participation in recreation activities than children with CP with independent upright mobility [12]. In addition, young children with physical disabilities, including CP, participate in fewer community activities than children without disabilities [13] and encounter personal and environmental barriers to play [14]. There is a need for standardized measures to assess young children’s participation in daily activities including self-care, play, and other family routines. Several tools have been developed to measure aspects of children’s participation in daily life; however, these tools are for school-aged children [15–19]. The Pediatric Evaluation of Disability Inventory [20] is a valid and reliable measure of self-care abilities for young children. However, for the self-care domain, there are 73 items of discrete skills and 8 items on caregiver assistance. The length of the measure limits its feasibility when there is a need to also assess participation in various daily activities. The Assessment of Preschool Children’s Participation [21], recently published, measures the activity participation of children 2–5 years 11 months of age. The assessment is also long, measuring 45 specific activities in the area of play, skill development, active physical recreation and social activities. As we were unable to identify a short tool, which minimizes respondent burden, to measure both participation in daily self-care and recreational activities in young children, our research team developed the Child Engagement in Daily Life measure. This parent-completed measure was developed as part of a multivariate study aimed to understand the determinants of motor abilities, self-care, participation, and play of young children with CP (Move & PLAY: Movement and Participation in Life Activities of Young Children) [22,23]. We sought to develop a measure that meets the criteria recommended for disability outcomes research: (1) the instrument is a valid measure of participation in self-care and play; (2) the instrument can be reliably completed by parents of young children with CP; (3) the instrument is feasible to administer in a community setting; (4) the length and content are acceptable to parents; (5) the instrument is easy to complete, score, and interpret; and (6) the instrument is sensitive-to-change [24]. Additionally, in respect for individual family culture and preferences, we wanted a measure that would assess participation in categories of play and family routines, as opposed to discrete activities that may not represent a child’s daily life. Pilot testing indicated that the instrument was feasible to administer in a community setting, acceptable to parents, and easy to score. The purpose of this study was to first determine the reliability and validity of the Child Engagement in Daily Life measure to ensure that the measure was reasonably sound and second to determine the order of difficulty of items for young children with CP to create an interval-level measure. The primary research objectives through this two-phase approach were to determine: (1) internal consistency and test–retest reliability of the Child Engagement in Daily Life measure; (2) construct validity of the measure (known groups methods), that is, the ability of the measure to discriminate participation in family and recreational activities and self-care among young children of

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varying age and motor ability and between children with and without CP; and (3) stability and hierarchical ordering of the items for young children with CP to devise an interval-level scoring system. Current research is in progress to investigate how children change in one year on the Child Engagement in Daily Life measure.

Methods Design The present study is part of a multi-site prospective cohort study, the Move and PLAY study, on determinants of motor abilities, self-care, participation and playfulness of young children with cerebral palsy. A methodological design was used to evaluate reliability, construct validity, and to create an interval level measure of the Child Engagement in Daily Life. Participants A convenience sample of 429 children with CP and their parents from the Move and PLAY study and 110 parents of children without CP participated in the study. The children and their families were recruited from four regions in the United States (Greater Seattle, WA; Greater Philadelphia, PA; Greater Atlanta, GA; Greater Oklahoma City, OK) and six provinces in Canada (Victoria and Vancouver, British Columbia; Regina, Saskatchewan; Winnipeg, Manitoba; Hamilton, Toronto and Peterborough, Ontario; Halifax, Nova Scotia; St John’s, Newfoundland and Labrador) to increase the generalizability of the results and ensure representation from urban, suburban, and rural areas. Recruitment sites included 18 children’s regional hospitals, 4 community hospitals, a long-term care pediatric facility, early intervention programs, and pediatric physical therapy private practices. Ethics approval was obtained from the Drexel University Institutional Review Board as well as from the research ethics boards of each of the institutions where recruitment was taking place. Written informed consent was obtained from all Move & PLAY participants. For parents of children without CP, completion of the forms implied consent. Table 1 provides demographic information for the full sample of children and their parents. The children with CP included 243 boys and 186 girls. The children ranged in age from 18 to 60 months (mean age 38 months, SD 11 months). Children’s motor abilities varied across all Gross Motor Function Classification System levels (GMFCS) [25]. Evidence of the generalizability of the sample of children with CP with respect to GMFCS level, by demonstrating the comparability of the prevalence of these levels to population-based studies, has been previously reported [26]. To facilitate comparison by having subsamples with relatively comparable numbers and similar motor abilities, children with CP were placed into one of the following three groups: GMFCS I (n ¼ 154), GMFCS II & III (n ¼ 102), and GMFCS IV & V (n ¼ 173). Caregivers were predominately mothers (92%) who had a mean age of 34 years (SD 6.9). Because 97% of the caregivers were parents, we refer to the participants as parents. Sixty-nine percent of the parents had greater than a high school education and 58% were employed. The median income bracket was $60 000–74 999. A sub-sample of 33, selected out of convenience of the parents of children with CP, participated in the test–retest reliability portion of this study. The reliability sample comprised 17 boys and 16 girls, across all GMFCS levels (I ¼ 14, II ¼ 2, III ¼ 6, IV ¼ 6 and V ¼ 5), between the ages of 18 and 56 months (mean age 39 months, SD 10 months). The children were predominantly white (67%) but the sample included children who were black, Hispanic, Asian, and bi-racial. Parents, primarily mothers (88%), had an average age of 32 years (SD 6.3).

Child engagement in daily life

DOI: 10.3109/09638288.2014.882417

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Table 1. Child and parent demographic characteristics.

Child age, months Mean (SD) Child gender Boy Girl Child ethnicity African American or Black Asian or Pacific Islander Hispanic/Latino Native American White Other Parent age, years Mean (SD) Parent relationship to child Mother Father Other (foster mother, grandmother, legal guardian) Parent educationb High School or less Community College/Associate’s Degree University/Graduate Degree Parent work status Full-time Part-time Not employed Family Incomea,b n for children with CP ¼ 414 n for children without CP ¼ 109 $75 000 $60 000–$74 999 $45 000–$59 999 $30 000–$44 999 $30 000 Family Composition Mean (SD) Adultsc Children

Measures

CP n ¼ 429 (%)

Without CP n ¼ 110 (%)

38.0 (11.3)

38.3 (12.0)

243 (57) 186 (43)

59 (54) 51 (46)

32 19 18 11 299 50

3 7 2 4 85 9

(8) (4) (4) (3) (70) (11)

(3) (6) (2) (4) (77) (8)

34.4 (6.9)

35.6 (4.9)

393 (92) 21 (5) 15 (3)

104 (94) 6 (6)

134 (31) 114 (27) 181 (42)

6 (6) 17 (15) 87 (79)

151 (35) 98 (23) 180 (42)

51 (46) 20 (18) 39 (36)

165 49 59 54 87

77 15 11 5 1

(40) (12) (14) (13) (21)

2.2 (0.8) 2.2 (1.1)

3

(70) (14) (10) (5) (1)

2.0 (0.3) 2.1 (0.8)

CP, cerebral palsy. Report based on the available information. Chi square test significant, p50.001; ct test significant, p50.001.

a

b

The combination of ‘‘snowball’’ and ‘‘convenience’’ sampling was used to recruit 110 parents of children without CP (59 boys and 51 girls; mean age 38 months, SD 12 months). Snowball sampling was performed by mailing two copies of the measure with letters of information to parents who had completed the Move & PLAY study and who provided us with permission to contact them again, and also to parents who were still in the study. Parents were asked to give the two measures to friends, neighbors or relatives who had a child without CP between 18 months to 5 years of age. A self-addressed, stamped envelope was provided for returning the booklets. Snowball sampling was not approved by some Research Ethics Boards; therefore, convenience sampling was also used to ensure a comparative target sample. A variety of facilities including child-care and preschool settings, pediatrician offices and health-care facilities were enlisted to enroll children without CP throughout the US and Canada. The children with and without CP were comparable in age, gender and ethnicity. The parents of children with and without CP were comparable in age, their relationship to the child, and employment status. As a group, the parents of children with CP had lower education and household income (p50.001) than parents of children without CP. The number of children in the household was similar in both groups but the number of adults in the household (p50.001) was higher for families of children with CP.

The Child Engagement in Daily Life measure is an 18-item questionnaire developed by the research team for completion by parents (Appendix 1). The questionnaire consists of two domains, participation in: (1) family and recreational activities (11 items) and (2) self-care (7 items). Two dimensions of participation in family life and recreational activities are scored on a 5-point Likert scale: frequency of participation (5 ¼ very often to 1 ¼ never) and enjoyment of participation (5 ¼ a great deal to 1 ¼ not at all). The domain participation in self-care measures the degree the child participates in his or her daily self-care activities (feeding, dressing, bathing and toileting). The ratings for the selfcare domain (5 ¼ yes, initiates and performs consistently to 1 ¼ no, unable) distinguish the need for physical assistance of an adult and, for children who do not require adult assistance, whether the child is able to consistently perform the activity. Based on our pilot work, the questionnaire can be completed in 10 minutes. The measure and scoring tables are presented in the Appendix 1 and can also be found on the CanChild Centre for Childhood Disability Research website at www.canchild.ca/en/ ourreseach/moveplay.asp. The items on participation of the child in family activities and self-care were adapted from the Pediatric Physical Therapy Outcomes Management System (PPT-OMS) [27]. The PPT-OMS was designed for reporting functional outcomes of pediatric episodes of care provided in a variety of settings. To establish content validity of the PPT-OMS, 10 physical therapists, selected for their expertise and varied professional experiences, completed a questionnaire and participated in a structured telephone interview to discuss their responses. The PPT-OMS was modified based on expert consensus. During initial development of the Child Engagement with Daily Life measure, the instrument was pilot tested for the Move and PLAY study with the parents of 6 children with CP between 3 to 4 years of age and across GMFCS levels I, III, IV and V. The parents reported that the measure was acceptable and feasible. No issues arose in regards to clarity of items. The Gross Motor Function Classification System (GMFCS) [25] is a five-level system designed to classify children with CP up to 18 years of age based on performance in daily life. A classification is made based on current gross motor function in daily activities with emphasis on mobility and sitting. Descriptions are provided for children in 5 age bands. For this study the 2 to 4 years and 4 to 6 years old age bands were used. The GMFCS has evidence of content, construct, and discriminative validity, and inter-rater reliability [28–30]. Prior to the data collection, all therapists who collected data demonstrated inter-rater reliability using a criterion videotape. After instruction in the GMFCS, each therapist classified six children and demonstrated a percentage agreement of greater than 80% with the criterion levels. Procedures Parents of the children with CP completed the Child Engagement in Daily Life measure at the first data collection point of the Move & PLAY study, either in their home or therapy center. At this visit, therapists determined the child’s GMFCS level through observation and interview with the parent. For the reliability portion of the study, a sub-set of 33 parents were mailed a copy of the measure and completed the measure a second time through a phone interview an average of 23 days after the first assessment. The parents of the children without CP were asked to complete the measure independently of the primary study participants. Data were collected between July 2007 and February 2009 for children with CP and between May 2009 and March 2010 for children without CP.

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Data analysis Descriptive statistics were used to report characteristics of the participants and total average item scores for the Child Engagement in Daily Life measure. Demographic comparisons between groups were determined with chi square and t-test analyses for categorical and interval-level measures, respectively. Total average item scores were used in the construct validity and reliability analyses. Reliability of the measure was determined through use of Cronbach’s alpha for internal consistency and Intraclass Correlation Coefficient, ICC (2,1), for test–retest analysis. Construct validity, known groups method, was determined through two-way analyses of variances, examining the effects of four motor function levels (without CP, GMFCS level I, GMFCS levels II & III, and GMFCS levels IV & V) and three age groups (17–30, 31–42, and 43–60 months, to divide the sample into three relatively equal groups of 2 year-olds, 3 year-olds, and 4–5 year-olds) on the Child Engagement in Daily Life scores. Data were analyzed using SPSS Statistics version 20 (Armonk, NY). An alpha level of 50.01 was used for analyses. Rasch analysis The Rasch model of item response analysis [31] was used to determine the hierarchical ordering of the measure items and to devise an interval scoring system based on the item calibrations. Analysis of the data set was conducted using the Facets program, version 3.66.0 (Beaverton, OR) [32]. The rating scale model was used for all analyses; this model assumes a constant rating scale across items. Two domains of the measure were examined using Rasch analysis, participation in: (1) family and recreational activities, the dimension of frequency of participation, and (2) self-care. Because of the different constructs being measured, separate analyses were done for each domain. For the participation in family and recreational activities domain, the dimension of enjoyment was not examined as part of the Rasch analyses as we did not believe it was appropriate or meaningful to determine hierarchical ordering of these items based on the subjective experience of enjoyment. The main assumption underpinning the Rasch model is that the items within a measure are unidimensional, or measuring a single latent trait. It is important to ascertain that this is in fact the case before interpreting the results. The assumption of unidimensionality is assessed using item fit statistics. The fit of items is analyzed with two statistics: an unweighted average score residual called the Outfit and a weighted version called the Infit. For both statistics the expected value, if the item fits the Rasch model, is 1.0. Large values indicate a misfit; values 51 are less of a concern, they arise when the item fits the model better than would be expected and in extreme cases can indicate redundant items. The Facets manual [32] indicates that values in the range 0.5 to 1.5 are constructive for measurement. The results of the Rasch analysis are item calibrations and person measures. For the Child Engagement in Daily Life measure we are interested in the item calibrations, and the resulting item hierarchy. Item calibrations are given in logits, or the log-odds of a response. These calibrations range from negative to positive infinity and are constrained to have a mean of zero. Participation is more likely on items with high positive calibration values and is less likely on items with large negative calibration values. Item separation was calculated to describe the variability of the item calibrations for each domain. For the scaled scores presented in the Appendix 1, a higher score represents greater participation in family and recreational activities and self-care. To investigate the stability of the item hierarchy the sample was randomly split into two distinct groups. Rasch analysis was

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performed independently for each sub-sample. High correlation between two distinct sub-samples implies stable item calibrations and adequate sample size. For the Child Engagement in Daily Life measure, differential item functioning (DIF) was investigated with respect to gender and GMFCS level for each of the two domains, frequency of participation in family and recreation activities and participation in self-care, by pairwise comparisons. DIF indicates that for equal levels of the overall trait different groups have different probabilities of scoring on an item. For instance, if girls are more likely to respond positively to an item than boys with the same overall level of participation then the item is said to exhibit DIF. Pairwise comparisons are likely to be liberal in the detection of DIF because multiple tests are required for each item. However, used along with a graphical inspection of the item measures for each group they provide an adequate means of assessment.

Results Reliability of the child in engagement in daily life measure Internal consistency of the domains of the measure was high. For items on the participation in family and recreational activities domain Cronbach’s alpha value for ratings of frequency of participation was 0.86 and for ratings of enjoyment was 0.91. Cronbach’s alpha value for items on the participation in self-care domain was 0.90. Test–retest reliability was acceptable for the frequency of participation in family and recreational activities dimension [ICC(2,1) ¼ 0.70 (95%CI: 0.47–0.84)] and the enjoyment of participation in family and recreational activities dimension [ICC(2,1) ¼ 0.70 (95%CI: 0.47–0.84)], and high for the participation in self-care domain [ICC(2,1) ¼ 0.96 (95%CI: 0.91–0.98)]. Construct validity The Child Engagement in Daily Life Measure scores for children with and without CP are presented in Table 2. No age by motor ability interaction was found for frequency or enjoyment of participation in family and recreational activities scores. Children’s frequency and enjoyment of participation in family and recreational activities varied by age (frequency: F ¼ 20.0, df ¼ 2, p50.001; enjoyment: F ¼ 11.3, df ¼ 2, p50.001) and gross motor ability (frequency: F ¼ 41.9, df ¼ 3, p50.001; enjoyment: F ¼ 22.0, df ¼ 3, p50.001). Parents reported that children younger than 31 months participate less often (p50.001) than older children and children younger than 31 months enjoy their participation less (p50.001) than children older than 42 months of age. Parents reported that children without CP participate more often than children with CP in all GMFCS level groupings (p50.01). For children with CP, those in GMFCS level I had the highest frequency of participation (p50.001), followed by those in levels II & III (p50.01), with children in levels IV & V having the lowest frequency of participation (p50.01). Parents reported children without CP enjoy participation more than children with CP at GMFCS levels II & III and IV & V (p50.001). Children with CP in GMFCS level I enjoy participation more than children with CP in GMFCS levels IV & V (p50.001). In contrast to the results for participation in family and recreational activities, there was an age by motor ability interaction for participation in self-care (F ¼ 7.9, df ¼ 6, p50.001), illustrated in Figure 1. A main effect was found for age (F ¼ 74.4, df ¼ 2, p50.001). Parents reported that

Child engagement in daily life

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a

Table 2. Child engagement in daily life measure scores for children with and without cerebral palsy, item means (SD) .

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Age groups

Motor ability groups (n)

Frequency of participation in family and recreational activities

Enjoyment of participation in family and recreational activities

Participation in self-care

17 to 30 months

Without CP (n ¼ 31) GMFCS level I (n ¼ 31) GMFCS levels II & III (n ¼ 36) GMFCS levels IV & V (n ¼ 53)

3.9 3.6 3.4 3.2

(0.44) (0.71) (0.63) (0.64)

4.5 4.1 4.0 3.8

(0.32) (0.77) (0.71) (0.76)

3.2 2.7 2.5 1.6

(0.50) (0.65) (0.59) (0.55)

31 to 42 months

Without CP (n ¼ 34) GMFCS level I (n ¼ 58) GMFCS levels II & III (n ¼ 39) GMFCS levels IV & V (n ¼ 46)

4.2 3.9 3.6 3.4

(0.44) (0.52) (0.63) (0.74)

4.6 4.4 4.2 3.9

(0.38) (0.45) (0.62) (0.97)

3.9 3.4 2.7 1.4

(0.55) (0.70) (0.72) (0.50)

43 to 60 months

Without CP (n ¼ 45) GMFCS level I (n ¼ 65) GMFCS levels II & III (n ¼ 27) GMFCS levels IV & V (n ¼ 73)

4.3 4.1 3.9 3.5

(0.34) (0.49) (0.53) (0.78)

4.7 4.5 4.3 4.2

(0.30) (0.49) (0.60) (0.93)

4.6 4.0 3.0 1.9

(0.40) (0.66) (0.65) (0.80)

Total

Without CP (n ¼ 110) GMFCS level I (n ¼ 154) GMFCS levels II & III (n ¼ 102) GMFCS levels IV & V (n ¼ 173)

4.2 3.9 3.6 3.4

(0.43) (0.57) (0.63) (0.74)

4.6 4.4 4.2 4.0

(0.34) (0.55) (0.66) (0.91)

4.0 3.5 2.7 1.7

(0.73) (0.81) (0.69) (0.68)

CP, cerebral palsy; GMFCS, gross motor functional classification system. Scores are reported as the average rating across all items.

a

Figure 1. Interaction between age and motor ability level for participation in self-care. CP, cerebral palsy; GMFCS, Gross Motor Functional Classification System.

children younger than 31 months have less participation in selfcare than both older age groups (p50.001) and children older than 42 months have higher participation in self-care than both younger age groups (p50.001). However, as noted in the interaction, this overall pattern was not found for children in GMFCS levels IV & V. A main effect was found for gross motor ability level (F ¼ 344.5, df ¼ 3, p50.001). Participation in self-care was significantly different between all gross motor ability level groupings (p50.001), with children with higher gross motor ability having higher participation in self-care scores.

Rasch analysis Frequency of participation in family and recreational activities dimension Rating scale structure. The suitability of the 5-point rating scale structure was confirmed by examination of the Thurstone thresholds, which showed that the responses were properly ordered. Item hierarchy. There was excellent agreement between the distinct sub-samples for both the item calibrations (Pearson

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Table 3. Item measures and fit values for frequency of participation in family and recreational activities.

Item

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ENG1: Family activities at home ENG2: Family outings ENG3: Indoor play with adults ENG4: Indoor play with children ENG5: Outdoor play with adults ENG6: Outdoor play with children ENG7: Quiet recreation ENG8: Organized lessons ENG9: Active recreation ENG10: Entertainment outings ENG11: Social activities

Measure

SE

Infit MS

Outfit MS

1.04 1.35 1.6 0.5 0.01 0.34 0.01 1.42 0.85 0.95 0.90

0.07 0.08 0.08 0.06 0.06 0.06 0.06 0.05 0.05 0.05 0.05

1.16 1.03 0.97 1.02 0.70 0.72 1.10 1.39 1.20 0.84 0.85

1.09 0.88 1.09 0.96 0.69 0.72 1.13 1.47 1.14 0.94 0.88

The item separation for the Frequency of Participation dimension is 16.05. Item fit. Values of the item measures, as well as Infit and Outfit values can be found in Table 3. All the items in the frequency of participation in family and recreational activities dimension had infit and outfit values between 0.5 and 1.5.

Figure 2. Item hierarchy for frequency of participation in family and recreational activities.

correlation 0.99) and the item ranks (Spearman rank correlation ¼ 0.95). These correlations indicate good item stability for the frequency of participation in family and recreational activities dimension. Figure 2 shows the item hierarchy for the frequency of participation in family and recreational activities dimension. To aid in the interpretation of the item hierarchy, the item calibrations, reported in Table 3, were re-scaled to the same metric as the score conversion tables (Appendix 1) prior to plotting. The numbers along the vertical axis correspond to the scaled scores reported in the Appendix 1. The location of the item along the hierarchy indicates the scaled scored at which the child would be expected to respond ‘‘once in a while’’ on the item. Children with higher scaled scores would be expected to participate more frequently and children with lower scaled scores would be expected to participate less frequently. The item children are most likely to participate in is ‘‘indoor play with adults’’ and they are least likely to participate in ‘‘organized lessons’’. There is good spread of the items across the dimension.

Differential item functioning (DIF). Eight of the 11 items displayed DIF among the GMFCS levels. Figure 3 illustrates the differences in item measures among the GMFCS levels. The item with the most obvious differential functioning is ‘‘active recreation’’; this item displays DIF between almost all GMFCS levels. The likelihood of participating in active recreation decreases with decreasing motor function. For children in level I this item is near the middle of the item hierarchy, but for children in level V it is the activity they are least likely to participate in. Another activity with a clear trend across GMFCS level is ‘‘entertainment outings’’. Participation in entertainment outings becomes relatively more likely the higher the GMFCS level. For ‘‘indoor play with adults’’, children in level I are much less likely to participate in indoor play with adults than children in Level II, IV or V. Children in level V are much less likely than all others to participate in ‘‘family activities at home’’. Despite the fact that statistical differences exist in the relative difficulty of the items among the GMFCS groups there is little practical difference with respect to the way that the measure would be scaled for children with CP based on GMFCS level. To determine the effect of having different scoring systems based on GMFCS level, five separate Rasch analyses were carried out for children in: Level I, Levels II & III, Levels I–III, Levels IV & V and all GFMCS levels together. The raw summed score to Rasch score conversions were then compared. Figure 4 illustrates the different score conversions and indicates that there is very little practical difference among them. Participation in self-care domain Rating scale structure. The suitability of the five-point rating scale structure was confirmed by examination of the Thurstone thresholds, which showed that the responses were properly ordered. Item hierarchy. There was excellent agreement between the distinct sub-samples on both the item calibrations (Pearson correlation ¼ 0.99) and the item ranks (Spearman rank correlation ¼ 0.89). These correlations indicate good item stability for the self-care domain. Figure 5 shows the item hierarchy for the self-care domain. As with Figure 2, the item calibrations, reported in Table 4, were

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GMFCS Level

Figure 3. Differences in the item measures in frequency of participation in family and recreation activities by GMFCS level. GMFCS, Gross Motor Functional Classification System.

Level I

Level II

Level III

Level IV

Level V

3

2.5

2

family activities at home family outings

1.5

Items: Absolute Measure

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1

indoor play with adults

0.5

indoor play with children outdoor play with adults

0

outdoor play with children

-0.5

quiet recreation

-1

organized lessons active recreation

-1.5

entertainment outings

-2

social activities -2.5

GMFCS = Gross Motor Functional Classification System

a cup’’ and least likely to be able to ‘‘dress their lower body’’. In this subscale the items are not well distributed along the continuum. Children are much more likely to be able to ‘‘feed self finger foods’’ than to ‘‘feed self with spoon or a fork’’. Also, the four most difficult tasks, dressing, bathing and toileting cluster fairly closely together but are much more difficult for children to perform than is the next closest task of eating with a utensil. The item separation for this scale is 24.31.

Figure 4. Comparison of different sum (raw) score to scaled (Rasch) score conversions in frequency of participation in family and recreational activities for various GMFCS level groupings. GMFCS, Gross Motor Functional Classification System.

rescaled to the same metric as the scaled scores for the domain. The numbers along the vertical axis represent the scaled score at which a child would be likely to respond ‘‘once in a while’’ on the item. Children are most likely to be able to ‘‘drink from a bottle or

Item fit. Values of the item measures, as well as Infit and Outfit values can be found in Table 4. One item had a large infit value in the self-care domain, ‘‘drinks from a bottle or cup.’’ For this item there were 12 unexpected responses, that is, responses with standardized residuals43.0. The unexpected responses reveal that the misfit is due to 10 children who report needing some degree of help on this item, but are capable of eating finger foods, and sometime using utensils, unassisted, tasks which are modeled as more difficult than drinking from a bottle or cup. Differential Item Functioning (DIF). Five of the seven self-care items displayed DIF among the GMFCS levels. Figure 6 illustrates the differences in item measures among the GMFCS levels. Three items, ‘‘feed self finger foods’’, ‘‘bathe self’’, and ‘‘use the toilet’’, show differential functioning between those in

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To determine the practical differences between different scoring systems based on GMFCS level separate Rasch analyses were done, as was done for the frequency of participation in family and recreational activities dimension. Similarly, there is not a practical difference in the conversion from the summed score to the scaled Rasch score for different GMFCS groups.

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Discussion

Figure 5. Item hierarchy for participation in self-care.

Table 4. Item measures and fit values for participation in self-care. Item ENG12: ENG13: ENG14: ENG15: ENG16: ENG17: ENG18:

Eat finger foods Use spoon or fork Drink with bottle or cup Dress upper body Dress lower body Bathe/clean self Use the toilet

Measure

SE

2.13 0.85 2.44 1.32 1.56 1.23 1.30

0.07 0.06 0.08 0.07 0.07 0.07 0.07

Infit MS Outfit MS 1.01 0.85 1.54 0.70 0.71 0.90 1.15

0.89 1.10 1.45 0.83 0.81 1.06 1.50

level V and all other levels. Parents of children in level V reported ‘‘feeding self finger foods’’ as relatively much more difficult than parents of other children. However, bathing and toileting were reported as relatively easier for this group. For toileting this DIF has arisen because a few children in level V whose parents reported no ability on any of the other self-care items reported some toileting ability. Parents of children in level IV reported that ‘‘drinking from a bottle or a cup’’ was relatively more challenging than those in the other levels, including children in level V. ‘‘Dressing the lower body’’ was relatively more difficult for children in levels II and III compared to children in level I.

The findings of this study support the reliability, construct validity, and test structure of the Child Engagement in Daily Life measure. Young children with CP participate in family and recreational activities once in awhile to often and enjoy these activities very much. They participate in their self-care but require assistance from an adult to complete the activities. Participation in family and recreational activities and self-care does vary by age and gross motor ability. Young children with CP participate less often in family and recreational activities and require more assistance to participate in self-care than young children without CP. The measure has a logical hierarchy of the items reflecting likelihood of participation. Collectively our findings give support to the Child Engagement in Daily Life measure as a reliable and valid tool that can be used to assess young children’s participation in family and recreational activities and self-care. The moderately high internal consistency of the measure suggests that the items do reflect a common construct without being redundant. Test–retest reliability was high for self-care, indicating that children’s performance in this domain is stable. The finding that test–retest reliability for frequency and enjoyment of participation in family and recreational activities was acceptable, but lower than the reliability for self-care, suggests that children’s participation in these activities may have varied somewhat between the test intervals due to availability of opportunities and family schedules and routines. The higher frequency of participation in family and recreational activities by children older than 30 months expands the findings by Law and colleagues [21] who found frequency of participation higher in children over 4 years of age. Our finding suggests that families may be expanding young children’s participation beginning in the early preschool years. Similarly, children’s participation in self-care with progressively more independence noted across the age groups reflects a natural development. The fact that this developmental age pattern was not seen for children with limited self-mobility (GMFCS levels IV and V) can be explained by the higher percentage of children with the most significant motor involvement (GMFCS level V) in the middle age group (76% compared to 47% in the youngest age group and 51% in the oldest age group); resulting in the middle age group requiring more assistance in self-care than the younger age group. This interpretation is consistent with findings by Ostensjo and colleagues [11] who reported that young children, ages 2 to 7 years, with CP with the most significant motor involvement (GMFCS level V) performed few self-care activities and required total assistance for 90% of the daily activities. The finding that children without CP participate more frequently in family and recreational activities (often to very often) compared to children with CP (once in awhile to often) is consistent with earlier research [13]. The finding that children with CP with the highest motor ability had the highest frequency of participation in family and recreational activities on the Child Engagement in Daily Life measure supports our previous research on intensity of participation with the Assessment of Preschool Children’s Participation measure [12]. In our previous study [12] we did not find a difference between children in GMFCS levels II/ III and other levels; whereas Law and colleagues [21] found that children in levels I–III had higher frequency of participation than

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DOI: 10.3109/09638288.2014.882417

Figure 6. Differences in the item measures in participation in self-care by GMFCS levels. GMFCS, Gross Motor Functional Classification System.

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GMFCS Level I

Level II

Level III

Level IV

Level V

4

3

Items: Absolute Measure

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2

eat finger foods

1

use spoon or fork

0

drink from bottle or cup dress upper body

-1

dress lower body

-2

bathe/clean byself use the toilet

-3 GMFCS = Gross Motor Functional Classification System

children with more significant motor impairment (levels IV and V). Collectively these findings suggest that motor ability enables young children to participate more readily. Even though statistical differences for enjoyment of participation were found between children of varying ages and motor abilities, on average parents reported high enjoyment for all children. Notably, children with significant motor limitations had the lowest degree of enjoyment and the highest variability with some children enjoying participation in activities very little. Service providers have a role in partnering with families to identify activities that children prefer and support their participation and enjoyment [33]. The finding that children with higher gross motor ability participated in self-care with less assistance is consistent with previous research [11] and suggests that posture and mobility provide a foundation for self-care activities. The Rasch analysis, with the items meeting the fit requirements, supported the unidimensionality of the domains. The item difficulty hierarchy of the frequency of participation in family and recreational activities dimension was logical, easier for young children to participate in family activities at home than in the community. The good separation of the items suggests that the dimension captures the performance level of young children with CP. The finding that the item ‘‘how often does your child participate in organized lessons, adapted sports, and playgroups’’ had the lowest fit statistic may reflect the complex nature of

participation in such activities, which require, availability, access, costs, and interest. The findings for DIF in frequency of participation in family and recreational activities across GMFCS levels are logical and have implications for practice. Participating in active recreation is more difficult for children with limited motor abilities and rehabilitation specialists have a role in providing adaptations, accommodations, and assistive technology to optimize children’s fitness and ability to participate in bike riding and playground activities [34]. The finding that children with limited motor abilities being more likely to participate in entertainment outings than children with higher motor function suggests that for young children, physical disability was not a barrier for families to access entertainment outings in the community. As an example, visiting a zoo may be relatively more likely for a child with a disability who uses a stroller for mobility in comparison to a child who is able to walk, but limited in their ability. However, the finding that children with limited motor abilities were less likely to participate in family activities at home suggests that in daily home life, children and families may need service providers to collaborate with them to discover adaptive ways for children to participate in family routines such as chores and mealtime. The item difficulty hierarchy of the participation in self-care domain showed a distinct separation between items related to feeding, these items children being more likely to participate, and

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items for the other self-care tasks of dressing, bathing, and toileting, all being items least likely to participate. With only seven items to the domain, the measure does not sufficiently capture tasks of intermediate difficulty. ‘‘Drinking from the bottle or cup’’ had the poorest fit suggesting that drinking from a bottle or cup are two distinct tasks and collapsing them together in one item confounded the results. The finding that children in GMFCS level V were reported to have more difficulty eating finger foods than children in the other levels may reflect greater limitations in manual abilities. Whereas their ability to use the toilet despite other self-care restrictions suggests that use of the toilet is a broad task such that children with significant motor limitations may participate to some extent in this task, such as indicating a need to use the toilet or sitting on the toilet with adaptations.

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Implications for practice The Child Engagement in Daily Life measure can be used in a variety of practice settings to evaluate children’s participation in family and recreational activities and self-care. In early intervention, the team can use the measure to assist families in identifying meaningful outcomes for their child and guide interventions in the home and community. Similarly, in outpatient services, physical and occupational therapists, can utilize the measure to engage the family in the therapy process and ensure that the therapy is focused on activities that might generalize to the child’s participation in home and community life. In early-childhood education settings, the self-care domain can be used by teachers and physical and occupational therapists to collaboratively assess children’s participation in foundational daily tasks. For inpatient settings, the measure can present rehabilitation providers a picture of the child’s pre-hospitalization status and the team can offer families guidance and supports during the rehabilitation process and transition to home. In all practice settings, we recommend that the measure be supplemented with a family interview to gather information on their interests, needs, and priorities for their child.

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cohort of young children with CP and the additional research underway support the use of the Child Engagement in Daily Life measure for applications in both research and practice.

Conclusion This study used a rigorous measurement approach and a large, heterogeneous sample of young children with CP to establish reliability and validity evidence for the Child Engagement in Daily Life measure. This measure can be used in early intervention and rehabilitation practice as a descriptive and discriminative measure to assess children’s participation in family and recreation activities and self-care. Service providers are encouraged to measure children’s participation, discuss interests and needs with families and children, and tailor interventions to support children’s participation at home and in the community. The Rasch analysis of the measure provides an interval scoring system and improves interpretation of the measure. Providers and families can anticipate activities that a child may be ready to participate in and establish goals and plan interventions accordingly.

Acknowledgements We thank Lynn Jeffries, Oklahoma region collaborator, Alyssa Fiss, Atlanta region collaborator, Barbara Stoskopf, overall study coordinator at CanChild Centre for Childhood Disability Research, and Allison Yocum, greater Seattle region coordinator for their able assistance in this project. Sincere appreciation is extended to all participating sites, therapist assessors and children and families.

Declaration of interest This study was funded by the Canadian Institutes of Health Research (MOP 81107) and the US Department of Education, National Institute for Disability and Rehabilitation Research (H133G060254).

Study limitations and future research Despite the rigorous approach to establish reliability and validity of the measure, study limitations direct continued research on the measure. The test–retest reliability component of the study was conducted with a small sample size with the test and retest done utilizing different methods of data collection (paper and phone interview process, respectively). The comparison group of parents of the children without CP was recruited through survey research methodology and the parents had higher education and household income and fewer adults in the household than the parents of children with CP. Higher parent education and household income may provide resources and supports that enable greater participation in family and recreational activities for children without CP compared to children with CP. The impact of motor ability on participation level; however, appears to be paramount as differences in participation were found between children with CP at all motor ability levels. Although the current self-care domain is reliable, research is in progress to add items that reflect an intermediate difficulty and divide complex tasks such as dressing and feeding into subcomponents. The ability of the Child Engagement in Daily Life measure to capture change over time is presently being examined to determine if the tool can be used as an evaluative measure. Additional longitudinal research is also underway to establish trajectories of participation in family and community activities and self-care to assist providers and families in determining if a child is participating ‘‘as expected’’, ‘‘better than expected’’, or ‘‘lower than expected’’ considering the child’s age and motor function level. Our current findings with a large

References 1. World Health Organization. International Classification of Functioning, Disability and Health – child and youth version. Geneva, Switzerland: World Health Organization; 2007. 2. Dunst CJ, Bruder MB, Trivette CM, et al. Natural learning opportunities for infants, toddlers, and preschoolers. Young Except Child 2001;4:18–25. 3. Henderson A, Eliasson AC. Self-care and hand function. In: Eliasson AC, Burtner PA, eds. Improving hand function in cerebral palsy: theory, evidence and intervention. London: Mac Keith Press; 2008:320–38. 4. Chiarello L, Palisano R, Maggs J, et al. Family priorities for activity and participation of children and youth with cerebral palsy. Phys Ther 2010;90:1254–64. 5. McConachie H, Colver AF, Forsythe RJ, et al. Participation of disabled children – How should it be characterized and measured? Disabil Rehabil 2006;28:1157–64. 6. Vargus-Adams JN, Martin LK. Measuring what matters in CP: a breadth of important domains and outcome measures. Arch Phys Med Rehabil 2009;90:2089–95. 7. Elkind D. The power of play. Cambridge (MA): Da Capo Press; 2007. 8. Ginsburg K. The importance of play in promoting healthy child development and maintaining strong parent-child bonds. Pediatrics 2007;119:182–91. 9. Lifter K, Foster–Sanda S, Arzamarski C, et al. Overview of play: its uses and importance in early intervention/early childhood special education. Infants Young Child 2011;24:225–45. 10. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol 2007; 109:8–14.

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DOI: 10.3109/09638288.2014.882417

11. Ostensjo S, Carlberg EB, Vollestad NK. Everyday functioning in young children with cerebral palsy: functional skills, caregiver assistance, and modifications of the environment. Dev Med Child Neurol 2003;45:603–12. 12. Chiarello L, Palisano R, Orlin M, et al. Understanding participation of young children with cerebral palsy. J Early Interv 2012;34:3–19. 13. Ehrmann LC, Aeschlemann SR, Svanum S. Parental reports of community activity patterns: a comparison between young children with disabilities and their nondisabled peers. Res Devel Disabil 1995;16:331–43. 14. Missiuna C, Pollock N. Play deprivation in children with physical disabilities: the role of the occupational therapist in preventing secondary disability. Am J Occup Ther 1991;45:882–8. 15. Coster W, Deeney T, Haltiwanger J, Haley S. School function assessment user’s manual. San Antonio (TX): The Psychological Corporation/Therapy Skill Builders; 1998. 16. Keller J, Kafkes A, Basu S, et al. The Child Occupational Self Assessment (COSA). Version 2.1. Chicago (IL): MOHO Clearinghouse, Department of Occupational Therapy, College of Applied Health Sciences, University of Illinois at Chicago; 2005. 17. 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; 2004. 18. Noreau L, Lepage C, Boissiere L, et al. Measuring participation in children with disabilities using the assessment of life habits. Dev Med Child Neurol 2007;49:666–71. 19. Young NL, Williams JI, Yoshida K, Wright JG. Measurement properties of the activities scale for kids. J Clin Epidemiol 2000;53: 125–37. 20. Haley SM, Coster WJ, Ludlow LH, et al. Pediatric evaluation of disability inventory: development, standardization, and administration manual. Boston (MA): New England Medical Center Hospital/ Trustees of Boston University; 1992. 21. Law M, King G, Petrenchik T, et al. The assessment of preschool children’s participation: internal consistency and construct validity. Phys Occup Ther Pediatr 2012;32:272–87.

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22. Chiarello L, Palisano R, Bartlett D, McCoy S. A multivariate model of determinants of change of motor abilities and engagement in selfcare and play of young children with cerebral palsy. Phys Occup Ther Pediatr 2011;31:150–68. 23. Bartlett D, Chiarello L, McCoy S, et al. The Move and PLAY study: an example of comprehensive rehabilitation outcomes research. Phys Ther 2010;90:1660–76. 24. Andresen EM. Criteria for assessing the tools of disability outcomes research. Arch Phys Med Rehabil 2000;81:S15–20. 25. 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;50:744–50. 26. Wong C, Bartlett D, Chiarello L, et al. Comparison of the prevalence and impact of health problems of preschool children with and without cerebral palsy. Child Care Health Dev 2011;38:128–38. 27. Palisano RJ, Haley SM, Westcott SL, Hess A. Pediatric physical therapy outcomes management system. Pediatr Phys Ther 1999;11: 220. 28. Palisano R, 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;39:214–23. 29. Palisano RJ, Hanna SE, Rosenbaum PL, et al. Validation of a model of gross motor function for children with cerebral palsy. Phys Ther 2000;80:974–85. 30. Wood E, Rosenbaum P. The gross motor function classification system for cerebral palsy: a study of reliability and stability over time. Dev Med Child Neurol 2000;42:292–6. 31. Wright B, Masters G. Rating scale analysis. Chicago (IL): MESA Press; 1980. 32. Linacre JM. Facets (Many-Facet Rasch Measurement) Version No. 3.66.0; 2009 [Computer software]. Available from: http://www.winsteps.com/facets.htm [last accessed 13 Sep 2013]. 33. Palisano R, Chiarello L, King G, et al. Participation-based therapy for children with physical disabilities. Disabil Rehabil 2012;34: 1041–52. 34. Orlin M, Palisano RJ, Chiarello L, et al. Participation in home, extracurricular, and community activities among children and youth with cerebral palsy. Dev Med Child Neurol 2010;52:160–6.

Appendix 1

Child engagement in daily life Lisa A. Chiarello, Robert J. Palisano, Sally Westcott McCoy, and Doreen J. Bartlett, Copyright, 2013. ‘‘The authors acknowledge the contribution of Stephen M. Haley for his work as an author, in collaboration with Robert J. Palisano and Sally Westcott McCoy, on the Pediatric Physical Therapy Outcomes Management System (PPT-OMS). The Child Engagement in Daily Life Measure had its genesis in the Self-care and Participation items on the Early Movement Outcomes Program of the PPT-OMS’’. We are interested in your child’s participation in daily activities such as interactions with others, play, and self-care. We would like the person who fills in this questionnaire to be the child’s parent or caregiver who lives with the child on a daily basis, so she or he knows the child well. You will be presented with two tables to complete. For each item in the tables, please check the appropriate response. The definitions for the responses are provided as guidelines to help you select the best response for your child.

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Part One: Participation in family and recreational activities You are asked to rate the items for Participation in Family and Recreational Activities on two scales: (1) How often your child participates in the activity and (2) Your perception of how much your child enjoys the activity. How often:

How much your child enjoys the activity:

Very Often – Your child always participates in the activity (at every opportunity) Often – Your child frequently participates in the activity Once in a while – Your child sometimes participates in the activity Almost never – Your child rarely participates in the activity Never – Your child never participates in the activity How often?

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Does often does your child participate in:

Very Often 5

Often 4

Once in a while 3

Almost Never 2

A great deal – Your child loves the activity Very much – Your child really likes the activity Somewhat – Your child likes the activity Very little – Your child is okay with the activity Not at all – Your child dislikes the activity How much do you think your child enjoys the activity?

Never 1

A Great Deal 5

Very Much 4

Somewhat 3

Very Little 2

Not at All 1

Family activities at home such as chores, mealtime, watching TV Family outings in the community such as shopping, going to religious services or the library, visiting family and friends Indoor play with adults Indoor play with children Outdoor play with adults Outdoor play with children Quiet recreational activities such as coloring, card games, reading books Organized lessons, adapted sports, and arranged play groups such as swimming, dance/creative movement, parent & me classes Active physical recreation such as riding a tricycle, swimming, running outside, climbing on playground equipment Entertainment outings such as going to the zoo, a children’s museum, the circus, concerts Social activities such as a play date, going to parties

Part Two: Participation in self-care This section asks you to rate how your child PARTICIPATES IN some activities of daily life such as feeding and dressing. The 5 answers below describe different ways that children do activities of daily life. We are using this questionnaire for children who are learning to do activities. We do not expect your child to be able to fully complete all the activities. Some of the activities may require help of an individual and others may require assistance for safety. Also, we know that some children may use special equipment, walking devices, or wear an orthosis/brace to do these activities. It is fine if your child uses special equipment to complete the activity. When you read the descriptions below, you will see there are 2 main ideas to think about when answering the questions: Does your child need the help of another person to do the activity? Does your child do the activity most of the time – that is to say – is your child always able to do it except for exceptional circumstances? The five choices are:  Yes, does the activity consistently – The child consistently does the activity during daily routines without help from another person.  Yes, does the activity inconsistently – The child does the activity without help from another person but is not successful or motivated to do it by him or herself all of the time.  Yes, with help for part of the activity – The child does part of the activity by him or herself but requires help from another person to complete the activity.  Yes, with constant help – The child does assist in the activity but requires help from another person for the entire activity.  No, unable – The child does not do the activity. Caregiver does the activity for the child.

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DOI: 10.3109/09638288.2014.882417

Does your child:

Yes, does the activity inconsistently 4

Yes, does the activity consistently 5

Yes, with help for part of the activity 3

Yes, with constant help 2

13

No, does not do the activity 1

Feed self finger foods Feed self with spoon or fork Drink from a bottle or cup Dress upper body Dress lower body Bathe/clean and tidy self Use the potty or toilet

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Scoring instructions and conversion tables For frequency of participation in family and recreational activities: sum the raw scores on the 11 items and use the following chart to determine the scaled score. Summed raw score 55 54 53 52 51 50 49 48 47 46 45 44 43 42 41

Scaled score

Summed raw score

Scaled score

Summed raw score

Scaled score

100.0 88.2 80.9 76.6 73.2 70.5 68.2 66.1 64.2 62.5 60.9 59.4 57.9 56.6 55.3

40 39 38 37 36 35 34 33 32 31 30 29 28 27 26

54.1 52.8 51.7 50.6 49.5 48.4 47.4 46.3 45.3 44.3 43.2 42.2 41.1 39.9 38.9

25 24 23 22 21 20 19 18 17 16 15 14 13 12 11

37.7 36.6 35.3 34.0 32.6 31.3 29.7 28.1 26.4 24.4 22.2 19.5 16.1 10.3 0.0

For enjoyment of participation in family and recreational activities: calculate the average of the raw scores on the 11 items and use the response options as a guide for interpretation of overall enjoyment. For participation in self-care: sum the raw scores on the 7 items and use the following chart to determine the scaled score. Summed raw score 35 34 33 32 31 30 29 28 27 26

Scaled score

Summed raw score

Scaled score

Summed raw score

Scaled score

100.0 90.2 84.7 81.4 78.8 76.7 74.6 72.7 70.7 68.8

25 24 23 22 21 20 19 18 17 16

66.6 64.4 62.0 59.5 57.1 54.5 52.1 49.6 47.0 44.5

15 14 13 12 11 10 9 8 7

42.0 39.5 36.9 34.0 30.6 26.5 21.2 12.8 0.0