Lisa A. Chiarello

Participation in Home, Extracurricular, and Community Activities among Children and Young People with Cerebral Palsy.

Aim  Participation in home, extracurricular, and community activities is a desired outcome of rehabilitation services for children and young people with cerebral palsy (CP). The purpose of this study was to investigate the effect of age and gross motor function on participation among children and young people with CP.

Participation-based therapy for children with physical disabilities

Purpose: Optimizing home and community participation of children with physical disabilities is an important outcome of rehabilitation. Method: A review of literature identified research and theory on participation of children with physical disabilities. The authors’ incorporated current knowledge to conceptualize the experience of optimal participation, formulate principles of participation-based physical and occupational therapy, and develop a five-step process for intervention. A case report was completed to illustrate application to practice. Results: Optimal participation involves the dynamic interaction of determinants (attributes of the child, family, and environment) and dimensions (physical, social, and self engagement) of participation. Real-life experiences enable children to learn new activities and develop skills that optimize their participation and self-determination. Interventions are: goal-oriented, family-centered, collaborative, strengths-based, ecological, and self-determined. A distinguishing feature of intervention is that the therapist’s primary role is to support the child and family to identify challenges to participation and solutions to challenges. The therapist is a consultant, collaborating with the child, family, and community providers to share information, educate, and instruct in ways that build child, family, and community capacity. Conclusion: The model may have utility for collaboration with families and community providers, determining goals for participation, and providing evidence-informed interventions. Implications for Rehabiliation Home and community participation of children with physical disabilities is an important outcome of rehabilitation. Optimal participation is conceptualized as the dynamic interaction of determinants (attributes of the child, family, and environment) and dimensions (physical, social, and self engagement) of participation. Participation-based physical and occupational therapy is based on the assumption that real-life experiences enable children to learn new activities and develop skills and that the empowerment of families enables them to advocate for the full inclusion and integration of their children in society. In participation-based therapy, the therapist is a consultant, collaborating with the child, family, and community providers to share information, educate, and instruct in ways that build child, family, and community capacity.

Family needs of parents of children and youth with cerebral palsy

BACKGROUND Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family-centred services. The aims of this study were to identify: (1) differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP; (2) the most frequent family needs; and (3) needs that differ on gross motor function level. METHODS A total of 501 parents (77.6% mothers) of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Childrens gross motor function level was classified using the Gross Motor Function Classification System. RESULTS Total number of family needs differed based on gross motor function level (P < 0.001) but not age. Parents of children/youth who use wheeled mobility expressed the highest number of family needs, while parents of children/youth who walk without restrictions expressed the fewest needs. Family needs for Information (P= 0.001), Support (P= 0.001), Community Services (P < 0.001) and Finances (P < 0.001) differed based on childrens gross motor function level. Over 50% of parents expressed family needs for information on current and future services, planning for the future, help in locating community activities and more personal time. Parents of children and youth who use wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. CONCLUSIONS The gross motor function of children/youth with CP has implications for collaboration with families to identify needs and co-ordinate services. Health professionals have a role to assist families with information needs and locating community services and leisure activities. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.

Determinants of Intensity of Participation in Leisure and Recreational Activities by Youth With Cerebral Palsy

OBJECTIVE To test a model of determinants of intensity of participation in leisure and recreational activities by youth with cerebral palsy (CP). DESIGN Prospective cohort study. SETTING Childrens hospitals (N=7). PARTICIPANTS Youth with CP (N=205; age, 13-21y) and their parents. The sample included 107 (57.2%) males and 26 (12.7%) to 57 (27.8%) youth in each of the 5 levels of the Gross Motor Function Classification System (GMFCS). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Youth completed the Childrens Assessment of Participation and Enjoyment by means of an interview. Parents completed the Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Coping Inventory, Measure of Processes of Care, a demographic questionnaire, and a services questionnaire. RESULTS Structural equation modeling was used to test the model. Fit statistics indicate good model fit. The model explains 35% of the variance in intensity of participation. Path coefficients (P ≤ .05) indicate that higher physical ability, higher enjoyment, younger age, female sex, and higher family activity orientation are associated with higher intensity of participation. GMFCS level and caregiver education have indirect effects on intensity of participation. The path between services and intensity of participation was not significant. CONCLUSIONS Participation by youth with CP is influenced by multiple factors. The influence of physical activity supports the importance of activity accommodations and assistive technology for youth who are not capable of improving physical ability. Knowledge of family activity orientation is important for identifying opportunities for participation. The unexplained variance suggests that the model should include other determinants, such as physical accessibility and availability of transportation and community leisure and recreational activities.

Family-centered care for children with cerebral palsy: conceptual and practical considerations to advance care and practice.

This article focuses on conceptual and practical considerations in family-centered care for children with cerebral palsy and their families. In the last 5 years, there have been important advances in our understanding of the components of family-centered care, and initial attempts to understand the client change processes at play. Recent research elaborates on family-centered care by delving into aspects of family-provider partnership, and applying family-centered principles to organizational service delivery to bring about organizational cultures of family-centered care. Recent research has also begun to consider mediators of client change, and new practice models have been proposed that embrace family-centered principles and illustrate the “art” of practice. Future research directions are discussed, including explorations of causal relationships between family-centered care principles, elements of caregiving practice, client change processes, and child and family outcomes. The meaning of the recent literature for pediatric neurology practice is considered.

Amount and Focus of Physical Therapy and Occupational Therapy for Young Children with Cerebral Palsy

ABSTRACT The aims of this study were to describe physical therapy (PT) and occupational therapy (OT) services for a cohort of 399 children with cerebral palsy (CP), 2–6 years old, residing in the United States and Canada. Parents completed a services questionnaire by telephone interview. Therapists classified childrens Gross Motor Function Classification System (GMFCS) level. Mean minutes per month of PT and OT were greater for children receiving services in both an educational and clinic setting. Mean minutes per month of PT and OT were greater for children in levels IV–V than children in level I and greater for children in the United States than children in Canada. Parents reported that interventions focused a moderate to great extent on primary impairments, secondary impairments, activity, and structured play activities, a moderate extent on environmental modifications and equipment; and a moderate to small extent on self-care routines. The results support the importance of coordination of PT and OT services.

A Multivariate Model of Determinants of Change in Gross-Motor Abilities and Engagement in Self-Care and Play of Young Children with Cerebral Palsy.

ABSTRACT A multivariate model of determinants of change in gross-motor ability and engagement in self-care and play provides physical and occupational therapists a framework for decisions on interventions and supports for young children with cerebral palsy and their families. Aspects of the child, family ecology, and rehabilitation and community services may influence childrens activity and participation. Aspects of the child include primary and secondary impairments, associated and comorbid health conditions, and adaptive behaviors. Literature support for the model is reviewed. A clinical scenario illustrates the use of the model as a framework for practice. The model encourages therapists to broaden the focus of rehabilitation services for young children with CP to include not only development of motor abilities but also comprehensive interventions and supports to enhance participation in daily activities and routines. Therapists are encouraged to consider how child, family, and service factors interact when planning interventions and evaluating outcomes.

The Move & PLAY Study: An Example of Comprehensive Rehabilitation Outcomes Research

This perspective article provides an example of a study planned using guidelines for comprehensive rehabilitation outcomes research, an approach that is believed to give service providers meaningful evidence to support practice. This line of investigation has been guided by the World Health Organizations International Classification of Functioning, Disability and Health. The short title of a study under way is Move & PLAY (Movement and Participation in Life Activities of Young Children). The article briefly describes the conceptual model, provides guidelines on how indicators and measures are selected, alludes to the details of selected measures, and describes processes of preparing for data collection, including obtaining ethics approval, preparing data collection booklets, training assessors and interviewers, and sampling. The aim of this investigation is to gain a better understanding of the multiple child, family, and service factors associated with changes in mobility, self-care, and play of preschool children with cerebral palsy as a result of using this research method. Comprehensive rehabilitation outcomes research holds promise in providing evidence that supports the complexities of planning rehabilitation services with clients with chronic conditions, such as children with cerebral palsy.

Changes in Mobility of Children with Cerebral Palsy Over Time and Across Environmental Settings

SUMMARY This study examined changes in mobility methods of children with cerebral palsy (CP) over time and across environmental settings. Sixty-two children with CP, ages 6-14 years and classified as levels II-IV on the Gross Motor Function Classification System, were randomly selected from a larger data base and followed for three to four years. On each of several assessments, parents completed a questionnaire on their childs usual mobility methods in the home, school, and outdoors/community settings. During the first assessment interval, mobility methods increased to methods requiring more gross motor control. During the second assessment interval, mobility methods were unchanged or decreased to methods requiring less gross motor control. Changes within the child and within the environment are hypothesized to occur and to impact changes in mobility methods. Screening at regular intervals is recommended to monitor changes in mobility. Interventions to enhance mobility may be indicated during periods of change in the child or exposure to new environments.

Physical therapy clinical management recommendations for children with cerebral palsy - spastic diplegia: achieving functional mobility outcomes.

The purpose of this special report is to present recommendations for the clinical management of children with cerebral palsy, spastic diplegia when increased functional mobility is the identified outcome. These recommendations provide a framework that allows physical therapists to increase their accountability and promote effective interventions for improved patient outcomes. The key components of this special report on clinical management are: a) the Major Recommendations that provide the background and evidence for clinical management; b) a flow chart to assist in clinical decision-making; and c) a Table of Tests and Measures for information on useful tools in the management of children with spastic diplegia. These recommendations are suggestions for clinical management, not an all-inclusive document on physical therapy for children with cerebral palsy. These recommendations may help therapists develop systematic approaches to service delivery and documentation.