Gary Bedell

Social participation of children and youth with acquired brain injuries discharged from inpatient rehabilitation: a follow-up study

Primary objective: To determine the nature and extent of participation in home, school and community life in children and youth with acquired brain injuries (ABI) and identify factors associated with their participation. Research design: Cross-sectional survey. Methods and procedures: Measures of participation, environment and child factors were completed by family caregivers. Data were obtained on 60 children and youth with acquired brain injuries up to 6.7 years post-discharge from one inpatient rehabilitation programme in the USA. Descriptive, correlation and regression analyses were conducted. Main outcomes and results: Children were most restricted in peer social-play, structured community activities and managing daily routines. Eighty-two per cent of the variance accounted for in participation scores was explained by discharge self-care and post-discharge child and environmental factor scores. Conclusions: Results suggest that greater efforts are needed to address social participation in children and youth with ABI. Information about functional activity at discharge and child and environmental factors may provide insight into post-discharge levels of participation and service needs.

Recommendations for the Use of Common Outcome Measures in Pediatric Traumatic Brain Injury Research

This article addresses the need for age-relevant outcome measures for traumatic brain injury (TBI) research and summarizes the recommendations by the inter-agency Pediatric TBI Outcomes Workgroup. The Pediatric Workgroups recommendations address primary clinical research objectives including characterizing course of recovery from TBI, prediction of later outcome, measurement of treatment effects, and comparison of outcomes across studies. Consistent with other Common Data Elements (CDE) Workgroups, the Pediatric TBI Outcomes Workgroup adopted the standard three-tier system in its selection of measures. In the first tier, core measures included valid, robust, and widely applicable outcome measures with proven utility in pediatric TBI from each identified domain including academics, adaptive and daily living skills, family and environment, global outcome, health-related quality of life, infant and toddler measures, language and communication, neuropsychological impairment, physical functioning, psychiatric and psychological functioning, recovery of consciousness, social role participation and social competence, social cognition, and TBI-related symptoms. In the second tier, supplemental measures were recommended for consideration in TBI research focusing on specific topics or populations. In the third tier, emerging measures included important instruments currently under development, in the process of validation, or nearing the point of published findings that have significant potential to be superior to measures in the core and supplemental lists and may eventually replace them as evidence for their utility emerges.

Psychometric evaluation of the Participation and Environment Measure for Children and Youth.

Aim  The aim of this study was to examine the psychometric properties (reliability and validity) of the Participation and Environment Measure for Children and Youth (PEM‐CY).

Development of the participation and environment measure for children and youth: conceptual basis

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities. Implications for Rehabilitation As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure. A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities. The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Further validation of the Child and Adolescent Scale of Participation (CASP)

Primary objective: To further validate the Child and Adolescent Scale of Participation (CASP) for children and youth with acquired brain injuries and other disabling conditions. Research design and methods: A cross-sectional design was used. Data were collected on 313 children and youth, aged 3–22, with and without disabling conditions. Children with acquired brain injuries (ABI) were the largest group (56%). Cronbachs alpha, factor analyses and Rasch analyses were used to examine internal scale consistency and structure. Correlation analyses were conducted to examine associations between CASP scores and scores that reflect extent of impairment and impact of environmental barriers. Independent t-tests or analyses of variance were used to examine mean differences in CASP scores in relation to sex, age and disability groups. Main outcomes and results: Children without disabilities had significantly greater extent of participation (higher CASP scores) than children with disabilities. Greater extent of participation was associated with lesser extent of impairment and environmental barriers. Evidence of internal consistency and internal structure validity was demonstrated. Factor analyses showed that items from similar domains loaded onto one of three factors and a large (63%) proportion of variance was explained. Rasch analyses revealed essentially one unidimensional construct. The item difficulty order closely matched the expected pattern of life situations that children would find more to less challenging to participate in. Conclusions: Findings were similar to prior research and suggested that the CASP is a promising new measure of participation. However, study design features limit generalizations and definitive conclusions that can be made. Future research is needed to assess the ability of the CASP to detect change over time and to include a larger and more diverse sample.

The Mediating Role of the Environment in Explaining Participation of Children and Youth With and Without Disabilities Across Home, School, and Community

OBJECTIVE To test the effect of personal and environmental factors on childrens participation across 3 different settings (home, school, community); to ascertain the interrelations between these factors; and to propose and test 3 models, 1 for each setting, using structural equation modeling. DESIGN Survey, cross-sectional study, and model testing. SETTING Web-based measures were completed by parents residing in North America in their home/community. PARTICIPANTS Parents (N=576) of children and youth with and without disabilities, (n=282 and n=294, respectively), ages 5 to 17 years (mean age, 11y 2mo), completed the Participation and Environment Measure for Children and Youth (PEM-CY). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The PEM-CY measured levels of participation frequency and involvement, as well as environmental barriers and supports of participation, in each of the following 3 settings: home, school, and community. Information about the childs health condition and functional issues was also collected. RESULTS All 3 models fit the data well (comparative fit index, .89-.97) and explained 50% to 64% of the variance of participation frequency and involvement. Environmental barriers and supports served as significant mediators between child/personal factors (income, health condition, functional issues) and participation outcomes, across all models. The effect of the environment was most pronounced, however, in the community setting. CONCLUSIONS Our findings highlight the unique role of the environment in explaining childrens participation across different settings and, therefore, support the development of interventions targeting modifiable environmental factors.

School participation, supports and barriers of students with and without disabilities

BACKGROUND We compared school participation patterns of students ages 5-17 with and without disabilities and examined whether features of the school environment were perceived to help or hinder their participation. METHODS Parents (n = 576) residing in the USA and Canada completed the Participation and Environment Measure for Children and Youth (PEM-CY) via the internet. RESULTS Parents of students with disabilities reported that their children participated less frequently in school clubs and organizations and getting together with peers outside the classroom and that they were less involved in all school activities. Parents of students with disabilities also were significantly more likely to report that features of the environment hindered school participation and that resources needed to support their childs participation were not adequate. CONCLUSIONS Parents of students with disabilities report that their children are participating less in important school-related activities. Barriers limiting school participation include features of the physical and social environment as well as limited resources.

Participation in the Home Environment among Children and Youth with and without Disabilities

Introduction: This study examines participation patterns and environmental supports and barriers for children with and without disabilities within their home setting. Method: The Participation and Environment Measure for Children and Youth (PEM-CY) is a newly developed, reliable parent/caregiver-report tool, which combines assessment of childrens participation and the environment. The PEM-CY was completed online by 576 parents of children or youth (5 to 17 years old) with and without disabilities from Canada and the United States. ANOVA analyses were performed to examine group differences in PEM-CY summary scores. Item-level differences are presented descriptively using radar plots. Results: After controlling for age and income, significant differences between children with and without disabilities were observed for all home-based PEM-CY participation and environment summary scores. Differences between the two groups were also evident at the item level, particularly when comparing the percentage of children and youth who never participate in specific home-based activities and when comparing perceived barriers to participation. Conclusion: Although all children and youth participate frequently in home-based activities, those with disabilities tend to participate in less complex and quieter/sedentary activities. This, in addition to parental report of environmental barriers to participation, highlights the potential importance of home-based occupational therapy intervention to optimise participation in this setting.

Functional outcomes of school-age children with acquired brain injuries at discharge from inpatient rehabilitation

Objective: To examine functional outcomes of school-age children with acquired brain injuries (ABI) at discharge from one inpatient rehabilitation programme in the Northeast, USA.Methods: A cross-sectional design was used to examine admission and discharge data on 176 children with ABI, aged 5–18 years. Functional outcomes included discharge Pediatric Evaluation of Disability Inventory (PEDI) self-care, mobility, social function scores and length of stay. General patterns of change in PEDI scores were analysed using paired t-tests and effect sizes. Correlation analyses were used to determine associations among continuous variables. Differences in outcomes related to independent variables were examined using independent t-tests and analysis of variance and covariance.Results: PEDI scores improved significantly at discharge. Less improvement was found in social function scores than mobility and self-care scores. Higher scores were associated with shorter LOS. Differences in most outcomes were found related ...Objective: To examine functional outcomes of school-age children with acquired brain injuries (ABI) at discharge from one inpatient rehabilitation programme in the Northeast, USA. Methods: A cross-sectional design was used to examine admission and discharge data on 176 children with ABI, aged 5–18 years. Functional outcomes included discharge Pediatric Evaluation of Disability Inventory (PEDI) self-care, mobility, social function scores and length of stay. General patterns of change in PEDI scores were analysed using paired t-tests and effect sizes. Correlation analyses were used to determine associations among continuous variables. Differences in outcomes related to independent variables were examined using independent t-tests and analysis of variance and covariance. Results: PEDI scores improved significantly at discharge. Less improvement was found in social function scores than mobility and self-care scores. Higher scores were associated with shorter LOS. Differences in most outcomes were found related to familys primary language, race/ethnicity and primary insurance. Younger children had significantly lower social function scores than older children. Conclusions: Findings provided insights about potential effects of selected variables on functional outcomes and suggest where future inquiry and efforts might be needed (e.g. social function and socio-cultural variables). Information not recorded in the programmes database could offer additional insights to assist with team decision-making.

Team Collaboration: A Case Study of an Early Intervention Team

The study described in this article sought to examine the workings of an interdisciplinary team as a research entity and as a service provider. There were two levels of analysis in the study: the process of collaborating on the research and the results of the research observation of an interdisciplinary team in a clinical setting. An interdisciplinary research team studied the interaction of a single clinical team over a 6-month period working with one child in a hospital-based early intervention program. The data were collected through intensive interviews, direct observations of the family and team members, and selected videotaping of team meetings. Qualitative data analysis methods were used, and five themes emerged: who takes the lead, the classroom as a way station, we like our freedom but..., who is giving and who is taking advice, and communication comes in few forms.