Ease of Caregiving for Children: Re-Validation of Psychometric Properties of the Measure for Children with Cerebral Palsy up to 11 Years of Age.

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\u27s 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 \u3c .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

Promoting Professional Development for Physical Therapists in Early Intervention

Early intervention (EI) service providers are expected to form cohesive teams to build the capacity of a family to promote their child’s development. Given the differences in personnel preparation across disciplines of service providers, the Early Childhood Personnel Center (ECPC) is creating integrated and comprehensive professional development models for those who provide services for young children with disabilities and their families. To help guide this process it is important to identify inter-disciplinary competencies as well as the unique knowledge and skills that each discipline contributes to the development and implementation of effective intervention plans. This paper describes personnel preparation of pediatric physical therapists from entry-level to ongoing professional development. Topics include licensure requirements, specialist certification, and EI competencies. This paper explains the unique knowledge and skills that pediatric physical therapists offer to the team as movement specialists. It also highlights particular challenges to professional development faced by novice and experienced physical therapists who work in natural environments. Finally, recommendations for personnel development including structured mentorship, interdisciplinary and team based learning, and strategies for knowledge translation are suggested

Moving from parent consultant to parent collaborator : one pediatric research team\u27s experience.

We share our experiences as academic physical therapists and parents of young people with cerebral palsy working together as a research team, describe and critically review how our working relationship has evolved and propose further enhancements to realize our shared vision. This manuscript is informed by a call for “family-centered research,” transcripts of face-to-face meetings held over a period of 11/2 days, the INVOLVE document and our experiences over almost a decade, as well as other related literature. Authentic collaborative research partnerships between academic researchers and parents embodying trust, mutual respect and shared social responsibility take time and effort to develop and sustain. Rehabilitation research is more meaningful and may be more impactful when strong collaborative partnerships between researchers and health service users are in place

Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy.

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\u27 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

Understanding participation of children with cerebral palsy in family and recreational activities.

AIMS: The primary aim of this study was to determine the effect of age, sex, gross motor, manual ability, and communication functions on the frequency and enjoyment of children\u27s participation in family and recreational activities. The secondary aim was to determine the relationships between motor and communication functions and participation. METHODS: Participants were 694 children, 1.5-12 years old, with cerebral palsy (CP) and their parents across the US and Canada. Parents rated children\u27s frequency and enjoyment of participation using the Child Engagement in Daily Life measure. Parents and therapists identified children\u27s level of function using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS). RESULTS: Differences in frequency and enjoyment of participation were found based on children\u27s GMFCS, MACS, and CFCS levels but not age or sex. Children with higher gross motor, manual, and communication functions had higher frequency and enjoyment of participation, compared to children with lower functions. Frequency of participation was associated with GMFCS and CFCS levels whereas enjoyment of participation was only associated with CFCS level. IMPLICATIONS: Knowledge of child\u27s gross motor, manual ability, and communication functions of children with CP is important when setting goals and planning interventions for participation

A Collaborative Approach to Decision Making Through Developmental Monitoring to Provide Individualized Services for Children With Cerebral Palsy.

In this Perspective, we suggest a process to improve physical and occupational therapists’ and families’ collaboration to provide appropriate, efficient, and effective evidence-based services to improve motor function, self-care performance, and participation in family and recreation activities for children with cerebral palsy (CP). This process is informed by 2 multisite prospective cohort studies (Move & PLAY and On Track). The heterogeneity of children with CP is described, limiting the utility of evidence from randomized controlled trials and systematic reviews to inform service planning for children with CP. An evidence-based alternative using prospective cohort studies that produce knowledge of determinants of outcomes important to children and families and methods for developmental monitoring using longitudinal developmental and reference percentile curves to inform individualized care is suggested. Guiding questions are provided to explore how knowledge of determinants and developmental monitoring can inform family-centered, collaborative, strengths-based, and focused service programs to support early development and function. Although this perspective paper is focused on children with CP, the research approach described for collection of useful information and the clinical method of data use may be helpful for people with other heterogeneous chronic health conditions in which physical and occupational therapists face similar challenges

Longitudinal Changes in Physical Caregiving for Parents of Children with Cerebral Palsy.

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 \u3c 0.01. Change over two-year period was found for parents of children in level I and II–III, p \u3c 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 \u3c 0.001. Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time

Determinants of gross motor function of young children with cerebral palsy: A prospective cohort study

Aim: The aim of this study was to test a model of determinants of gross motor function of young children with cerebral palsy (CP). Method: Four hundred and twenty-nine children with CP (242 males, 187 females; mean age 3y 2mo, SD 11mo) representing all levels of the Gross Motor Function Classification System (GMFCS) participated. Children in levels I to II and III to V were classified as Groups 1 and 2 respectively. Distribution of CP was quadriplegia, 44%; hemiplegia, 24%; diplegia, 23%; triplegia, 6%; and monoplegia, 2% (data not available for 1%). Impairment and motor function data were collected by reliable assessors; parents completed questionnaires on health conditions and adaptive behavior. Seven months later, parents were interviewed about family life and services received. One year after the study onset, motor function was re-evaluated. Analysis involved structural equation modeling. Results: The well-fitting model explained 58% and 75% of the variance in motor function at study completion for Groups 1 and 2 respectively. Primary impairments (spasticity, quality of movement, postural stability, and distribution of involvement; β=0.52-0.68) and secondary impairments (strength, range of motion limitations, and reduced endurance; β=0.25-0.26) explained the most variance. Adaptive behavior was a significant determinant only for Group 2 (β=0.21) and participation in community programs was significant only in Group 1 (β=0.13). Interpretation: Motor function is supported by optimizing body structures and function for all children and enhancing adaptive behavior for children with greater motor challenges. © 2013 Mac Keith Press

Improving the outcome of infants born at <30 weeks' gestation - a randomized controlled trial of preventative care at home

Background: Early developmental interventions to prevent the high rate of neurodevelopmental problems in very preterm children, including cognitive, motor and behavioral impairments, are urgently needed. These interventions should be multi-faceted and include modules for caregivers given their high rates of mental health problems

Goal Development Practices of Physical Therapists Working in Educational Environments

Aims: The aims of this study were to (1) describe the practices that school-based physical therapists use in developing student goals, and (2) identify facilitators and barriers to development of goals that are specific to participation in the context of the school setting. Methods: 46 school-based physical therapists who participated in a previous study on school-based physical therapy practice (PT COUNTS) completed a questionnaire on goal development. Frequencies and cross tabulations were generated for quantitative data. Open-ended questions were analyzed using an iterative qualitative analysis process. Results: A majority of therapists reported that they frequently develop goals collaboratively with other educational team members. Input from teachers, related services personnel, and parents has the most influence on goal development. Qualitative analysis identified five themes that influence development of participation-based goals: (1) school-based philosophy and practice; (2) the educational environment, settings, and routines; (3) student strengths, needs, and personal characteristics; (4) support from and collaboration with members of the educational team; and (5) therapist practice and motivation. Conclusion: Goal development is a complex process that involves multiple members of the educational team and is influenced by many different aspects of practice, the school environment, and student characteristics