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Purpose: To re-validate stability and hierarchal ordering of items, test–retest reliability, and construct validity of the Ease of Caregiving for Children measure for parents of children with cerebral palsy (CP) up to 11 years of age. Methods: Participants were 613 parents of children with CP between 1.5 and 11 years of age. Parents completed Ease of Caregiving for Children and both parents and therapists classified children's levels of gross motor, manual and communication functions. Results: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty. Test–retest reliability was good: ICC = 0.69 (95% CI 0.52–0.81). For construct validity, ease of caregiving was higher for parents of children with higher functioning compared to parents of children with lower functioning, p <.001. Conclusions: Ease of Caregiving for Children is a unidimensional, reliable and valid measure of physical caregiving for parents of children with CP 1.5–11 years. [ABSTRACT FROM AUTHOR]

Aims: To create longitudinal trajectories and reference percentiles for performance in self-care of children with cerebral palsy (CP). Methods: Participants were 708 children with CP, 18 months through 11 years of age and their parents residing in 10 regions across Canada and the United States. Gross Motor Function Classification System (GMFCS) levels were determined by consensus between parents and therapists. Parents' completed the Performance in Self-Care domain of the Child Engagement in Daily Life Measure two to five times at 6-month intervals. Nonlinear mixed-effects models were used to create longitudinal trajectories. Quantile regression was used to construct cross-sectional reference percentiles. Results: The trajectories for children in levels I, II, and III are characterized by an average maximum score between 79.6 (level I) and 62.8 (level III) and an average attainment of 90% of the maximum score between 7 and 9 years of age. The trajectories for children in level IV and V show minimal change over time. Extreme variation in performance among children of the same age and GMFCS level complicate interpretation of percentile change of individual children. Conclusion: The findings are useful for monitoring self-care of children with CP and evaluating change for children in GMFCS levels I–III. [ABSTRACT FROM AUTHOR]

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children's gross motor function level and age. Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II–III, and IV–V) and age (1.7–5.9 and 6–11 years) using a three-way mixed ANOVA. Results: Among all analyses, a two-way interaction was found between children's GMFCS level and test time on ease of caregiving, p < 0.01. Change over two-year period was found for parents of children in level I and II–III, p < 0.01, but not parents of children in levels IV–V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II–III, and levels IV–V, who reported the lowest ease of caregiving, p < 0.001. Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time. [ABSTRACT FROM AUTHOR]

Engaging youth with disabilities and families in research is critical in facilitating knowledge utilization to impact processes and outcomes of services and interventions. Organizations such as INVOLVE in the United Kingdom, the Canadian Institutes of Health Research and the Patient-Centered Outcomes Research Institute in the United States advocate for engaging stakeholders in all aspects of the research process. Despite these efforts, there is a need for research to identify best practices and approaches for stakeholder engagement in research as current descriptions around processes are lacking. In this perspective paper, we share our insights and experiences with engaging youth with disabilities and families as members of the research team. We offer considerations and strategies for stakeholder engagement, as well as identify relevant frameworks to facilitate stakeholder engagement in research. We encourage researchers to share and document their experiences with stakeholder engagement in research to provide guidance for others with shared interests. We hope this paper will initiate conversations among researchers about best practices to maximize the full potential of stakeholders' time and input. [ABSTRACT FROM AUTHOR]

Aim: To determine whether a collaborative intervention process facilitates parent–therapist interactions. Methods: Participants were 18 children with physical disabilities, their mothers, and 16 physical therapists. Therapists randomized to the experimental group were instructed in strategies for collaboration (working together) with parents in goal setting, planning, and implementing interventions. Family–therapist dyads participated in 6 weekly sessions. Four sessions were videotaped and combined (1st and 2nd for goal-setting/planning, 3rd and 5th for implementation) to code behaviors using Response Class Matrix. Multivariate analysis of variance was used to compare therapist and parent behaviors between groups. Results: Therapists in the experimental group demonstrated a higher frequency of "seeking information" (p < 0.01), "giving information" (p < 0.05), "positive behavior" (p < 0.01) and lower frequency of "child-related behavior" (p < 0.001) than therapists in the comparison group during goal-setting/planning and implementation. Parents in the experimental group demonstrated a higher frequency of "giving information" than parents in the comparison group (p < 0.01) during goal-setting/planning and implementation. Conclusion: Parents and therapists in the experimental group interacted more with each other, whereas those in the comparison group focused more on the child. The collaborative strategies appear to have increased parent participation in the intervention process, which has been a challenge for physical and occupational therapists. [ABSTRACT FROM AUTHOR]

Purpose: To identify child, family, and service determinants of playfulness of young children with cerebral palsy. Methods: Participants were 429 children, 18–60 months. Children were divided into two groups, Gross Motor Function Classification System levels I-II and III-V. Therapists collected data on body functions and gross motor function; parents provided information about children's health conditions and adaptive behavior, family life, and services. One year after the beginning of the study, therapists assessed children's playfulness. Data were analyzed using structural equation modeling. Results: Higher gross motor function was associated with higher playfulness for both groups. Greater impact of health conditions on daily life was associated with lower playfulness for children in levels I-II. More effective adaptive behavior was associated with higher playfulness, and higher parent perception of therapists' family-centeredness was associated with lower playfulness for children in levels III-V. Conclusion: Supporting gross motor function, health, and adaptive behavior may foster playfulness. [ABSTRACT FROM AUTHOR]

Purpose: To establish the construct validity and internal consistency of the Arabic Children Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC) and to determine the effects of age, gender, and disability status on diversity and intensity of participation. Methods: The World Health Organization guidelines for translation of measures were applied to translate the CAPE and PAC, 75 children with cerebral palsy (mean age = 10.7 ± 2.9 years) and 75 children with typical development (mean age = 10.8 ± 2.7 years) completed the translated measures. The construct validity of the translated measures was demonstrated by principle component analyses in addition to the known-groups method by examining the effects of age, gender, and presence of disability on diversity and intensity scores. The internal consistencies of the extracted components were examined by Cronbach's alpha. Results: Four components emerged: (1) physical activities; (2) home-based activities; (3) self-improvement activities; and (4) social activities. Cronbach's alpha varied from 0.61 (social activities) to 0.83 (physical activities). Age, gender, and disability were significant determinants of types of activities. Conclusions: The Arabic CAPE and PAC are culturally valid in measuring participation of children with or without disabilities in Jordan. The child's age, gender, and disability should be considered to provide participation-based plans of care that are considerate for children and their families. The Arabic CAPE and PAC are culturally valid measures for participation of children with or without disabilities in Jordan. The Arabic CAPE and PAC measures can guide participation-based plans of care that are meaningful and considerate for children and their families. Child age and gender should be considered to provide appropriate activities and to facilitate participation of children with and without disabilities. Families and service providers in Jordon are encouraged to provide children opportunities to participate in desired physical, self-improvement, and social activities. [ABSTRACT FROM AUTHOR]

Aims: To examine the effects of a four-step collaborative intervention process on parent and child outcomes and describe parents' and therapists' experiences. Methods: Eighteen children with physical disabilities, their mothers, and 16 physical therapists participated. Therapists randomized to the experimental group were instructed in the collaborative intervention process. All family-therapist dyads participated in six weekly sessions. Outcomes included the adapted Family Empowerment Scale (FES) and Canadian Occupational Performance Measure (COPM). A questionnaire was completed by parents and therapists to rate and describe their experiences. Results: Mean scores on the FES (p <.05) and COPM (p <.001) increased after intervention but there were no group differences (p >.05). Effect size for change in child performance (.73) and parent satisfaction (1.08) on the COPM favored the experimental group. Parents in the experimental group were more confident in carrying out activities during daily routines (p =.01) and worked together with therapists to a greater extent (p =.01) than parents in the comparison group. Therapists in the experimental group perceived that they provided information/instruction (p <.01) and worked together with parents (p =.02) to a greater extent than therapists in the comparison group. Conclusions: Findings support the importance of shared goal setting for children's activities. Further research is recommended. [ABSTRACT FROM AUTHOR]

Aims: Understanding parent perceptions of family-centered care (FCC) is important to improve processes and outcomes of children's services. Objective: A systematic review and meta-analysis of research on the Measures of Processes of Care (MPOC-20) were performed to determine the extent parents of children with physical disabilities perceive they received FCC. Methods: A comprehensive literature search was conducted using four databases. A total of 129 studies were retrieved; 15 met the criteria for the synthesis. Meta-analysis involving 2,582 mothers and fathers of children with physical disabilities mainly cerebral palsy was conducted for the five scales of the MPOC-20. Results: Aggregated mean ratings varied from 5.0 to 5.5 for Providing Specific Information about the Child; Coordinated and Comprehensive Care; and Respectful and Supportive Care (relational behaviors) and Enabling and Partnership (participatory behaviors) indicating that, on average, parents rated FCC as having been provided to “a fairly great extent.” The aggregated mean rating was 4.1 for Providing General Information, indicating FCC was provided “to a moderate extent.” Conclusions: Service providers are encouraged to focus on child and family needs for general information. Research is needed to better understand parent perspectives of service provider participatory behaviors which are important for engaging families in intervention processes. [ABSTRACT FROM AUTHOR]

Aims: This study investigated the experiences and perceptions of parents of children with cerebral palsy (CP) when classifying their children using the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The second aim was to collate parents’ recommendations for service providers on how to interact and communicate with families.Methods: A purposive sample of seven parents participating in the On Track study was recruited. Semi-structured interviews were conducted orally and were audiotaped, transcribed, and coded openly. A descriptive interpretive approach within a pragmatic perspective was used during analysis.Results: Seven themes encompassing parents’ experiences and perspectives reflect a process of increased understanding when classifying their children, with perceptions of utility evident throughout this process. Six recommendations for service providers emerged, including making the child a priority and being a dependable resource.Conclusions: Knowledge of parents’ experiences when using the GMFCS, MACS, and CFCS can provide useful insight for service providers collaborating with parents to classify function in children with CP. Using the recommendations from these parents can facilitate family–provider collaboration for goal setting and intervention planning. [ABSTRACT FROM PUBLISHER]

Purpose: To examine the psychometric properties of the Chinese version of the Assessment of Preschool Children’s Participation (APCP-C).Method: The APCP, a measure of participation in play, skill development, active physical, and social activities of preschool children, was translated into Traditional Chinese. Data on 94 Taiwanese children with physical disabilities aged 2 to 6 years were analyzed.Results: Internal consistency (Cronbach’sα= 0.85 and 0.86) and test–retest reliability (ICCs = 0.79) were excellent for total scores, and varied from excellent to poor for activity type scores. Items were generally relevant to the Taiwanese culture. Correlations between scores for the APCP-C and the Chinese version of the Pediatric Evaluation of Disability Inventory Mobility and Social Functioning scales in general supported convergent validity (r= 0.33–0.68) but less support for discriminant validity.Conclusions: The results provide evidence of reliability, cross-cultural validity, and limited support for construct validity of the APCP-C in measuring participation of children with physical disabilities. [ABSTRACT FROM AUTHOR]

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings.Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 ± 4.5, range 2–21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI).Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 ± 1.3,p< 0.05) than mothers of children who can walk (mean CSI score 4.5 ± 3.0,p< 0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II).Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community. [ABSTRACT FROM PUBLISHER]

To examine the validity and sensitivity of the Test of Visual-motor Skills and the Developmental Test of Visual-motor Integration, 38 students with learning disabilities were administered each test twice over a 6-mo. period. Correlations between age-equivalents, percentile ranks, and z-scores ranged from .58 to .71, supporting the construct validity of the Test of Visual-motor Skills. However, mean scores on the Developmental Test of Visual-motor Integration were significantly higher with all three methods of reporting test results and do not support concurrent validity. Subjects made a significantly greater mean change in age-equivalent score on the Test of Visual-motor Skills, suggesting that this score is preferable for measuring change in children receiving remedial programs for visual-motor dysfunction.