Psychometric properties of the Chinese version of the child and adolescent factors inventory (CAFI-C).

The Child and Adolescent Factors Inventory (CAFI) is a parent-report measure that assesses type and severity of impairments experienced by children and youth with a range of disabling conditions. The CAFI was translated from English into Traditional Chinese (CAFI-C) and has been used in the Disability Evaluation System (DES) in Taiwan. The aim of this study was to validate the use of the CAFI-C in the DES. Participants included 18,119 children and youth with disabilities between the ages of 6.0-17.9 (Mean=11.6; SD=3.46). The factor structure, internal consistency, convergent validity, and discriminant (known groups) validity were examined. The results indicated that the CAFI-C had a two-factor structure (Mental/speech and Physical/sensory impairment) that explained 54.3% of the variance, and had adequate internal consistency (α=0.80-0.90). Children and youth with higher CAFI-C scores had significantly more participation restrictions and environment barriers. CAFI-C scores were significantly different among children and youth with different disability types and of four severity levels (mild, moderate, severe, and profound) rated by physicians. These findings support the internal consistency and validity of the CAFI-C for assessing type and severity of impairment in children and youth with disabilities in Chinese-speaking population.

Informing design of an app-based coaching intervention to promote social participation of teenagers with traumatic brain injury.

OBJECTIVE: To examine perspectives of multiple stakeholders to inform the design of an app-based coaching intervention to promote social participation in teenagers with traumatic brain injury (TBI). METHODS: Teenagers and college students with and without TBI and parents of teenagers with TBI were recruited from two children's hospitals and two universities in the USA (n = 39). Data were collected via interviews, focus groups, and surveys and examined using descriptive statistics and content analyses. RESULTS: Teenagers with TBI reported more social participation barriers and fewer strategies for addressing these barriers than teenagers without TBI. There was consensus across groups about the value of college student coaches and use of smartphones and apps. Participants expressed mixed views on the use of chat rooms and degree of parent involvement. CONCLUSION: Results provided insights about the possible benefits of the intervention, and informed its initial design (e.g., desired coach qualities, and type of coach training and supervision).

Psychometric evaluation of the Dutch language version of the Child and Family Follow-up Survey.

AIM: The Child and Family Follow-up Survey (CFFS) is developed to monitor long-term outcomes of children and youth with acquired brain injury (ABI). The aim of this study was to translate and adapt it into the Dutch language and to evaluate its reliability and validity. METHODS: The CFFS includes the Child and Adolescent Scale of Participation (CASP), the Child and Adolescent Factors Inventory (CAFI) and the Child and Adolescent Scale of Environment (CASE). The CFFS was translated into Dutch following international guidelines and adapted. The internal consistency, validity and test-retest reliability were examined among two groups of patients (n = 140 and n = 27) in the age of 5-22 years with ABI and their parents. RESULTS: The translation and adaptation resulted in the CFFS-DLV, Dutch language version. The CASP-DLV, CAFI-DLV and CASE-DLV had a good internal consistency, with Cronbach's alpha being 0.95, 0.89 and 0.83, respectively. There were statistically significant correlations among the three CFFS subscale scores. These scores were also significantly correlated with the total scores of the Pediatric Quality of Life Inventory (PedsQL, parent) and the Pediatric Stroke Outcome Measure, but not with the domain scores of the Children's Assessment of Participation and Enjoyment (CAPE). The test-retest reliability was good to moderate, with the intra-class correlation coefficients being 0.90 for the CASP-DLV, 0.95 for the CAFI-DLV and 0.81 for the CASE-DLV. CONCLUSIONS: The CFFS-DLV, as translation and adaptation of the CFFS into Dutch, proved to be a promising instrument to measure long-term outcomes of children and youth with ABI. Further research is needed to examine its responsiveness to change and potential in other patient groups.

Psychometric properties of the child and adolescent scale of participation--traditional Chinese version.

The child and adolescent scale of participation (CASP) was translated into traditional Chinese and has been included as part of the new Disability Evaluation System (DES) in Taiwan since July 2012 for school-aged children with special needs. The aim of this study was to examine the psychometric properties of the traditional Chinese version of the CASP (CASP-C). Participants were 231 parents/caregivers of children aged 6-18 years recruited from 31 hospitals who qualified for the DES in Taiwan. The majority of the children had intellectual disabilities (67%), followed by physical disabilities and autistic spectrum disorders. The CASP was translated into traditional Chinese according to the cross-cultural adaptation process. Content and known group validity, internal consistency, and internal scale structure were examined using a t-test, Cronbach's α, factor analysis, and Rasch analysis. The CASP-C items were mapped onto all nine chapters of the International Classification of Functioning--Children and Youth version. Children with less severe intellectual disabilities had significantly higher CASP-C scores than children with more severe disabilities. Internal consistency was acceptable on the subdomains and total CASP-C (Cronbach's α=0.88-0.97). Factor analysis yielded a two-factor CASP-C structure contributing 64.1% explained variance. Rasch analysis also indicated a unidimensional construct. The results in psychometric analyses are in agreement with those of other studies, and support that the CASP-C has acceptable psychometric properties for use in the DES in Taiwan. However, further study with a larger and more diverse sample is required to increase the generalizability of the results.

Parent perspectives to inform development of measures of children's participation and environment.

OBJECTIVE: To obtain parents' perspectives on children's participation and environment to inform the development of new measures. DESIGN: Descriptive design using qualitative methods with focus groups and semistructured interviews. SETTING: Focus groups and interviews with parents of children with disabilities were held on campus, in the home, and at community agencies; interviews with parents of children without disabilities were conducted in their homes. PARTICIPANTS: Parents (N=42): parents of children with disabilities (n=25) from the United States (n=14) and Canada (n=11) and parents of children without disabilities (n=17) from the United States. Most children (93%) were aged 5 to 16 years. Children with disabilities had diagnoses characterized by psychosocial, learning, attention, and sensory-processing difficulties. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Not applicable. RESULTS: Parents described common life activities and environmental factors that were similar to and expanded on categories currently reported in the literature. Differences identified among parents mainly focused on impairments and challenges of children with disabilities and concerns related to activities and programs designed for them. Parents spontaneously talked about participation and environmental factors together. Their descriptions consistently included information about features of the physical and social environment and other factors that influenced their child's participation, such as demands of the activity, parent strategies, and the child's age, preferences, and abilities. Parents' standards and expectations for their child's participation often varied depending on the specific setting, activity, and situation. CONCLUSIONS: Findings have informed the development of a parent-report measure that explicitly links participation and environmental factors specific to home, school, and community settings. Having 1 measure to assess participation and environment rather than using distinct tools to assess each construct separately should situate the child's participation in real-life contexts.

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 to family's 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 programme's database could offer additional insights to assist with team decision-making.

Exploring parents' use of strategies to promote social participation of school-age children with acquired brain injuries.

OBJECTIVE: To understand parents' perspectives about the strategies they use to promote social participation of their school-age children with acquired brain injuries (ABI) in home, school, and community life. METHOD: A descriptive research design employing a semistructured interview format was used. Interviews were conducted in the homes of 16 families of school-age children with ABI discharged up to 7 years earlier from one inpatient rehabilitation program. Data were examined using content and constant-comparison analyses. RESULTS: Parents needed time to allow the recovery process to unfold for themselves and their children and developed strategies that fit into or assisted with managing family routines. Over time parents developed insight into the activity demands and their child's potential success to participate in desired activities. Based on these insights, parents used "anticipatory planning," which involved previewing upcoming events and activities and using strategies to promote positive and prevent negative experiences for their children. Specific strategies that parents used to promote social participation were classified into three categories: Creating opportunities, teaching skills, and regulating cognitive and behavioral function. CONCLUSIONS: Understanding how families use and integrate strategies within the context of their daily lives and what factors influence strategy use may provide practitioners with insights needed to support families in promoting their children's social participation.

Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation.

OBJECTIVE: To describe the development and content of a follow-up survey designed to monitor needs and outcomes of children and youth with acquired brain injuries (ABI) and their families after discharge from inpatient rehabilitation. Preliminary findings pertaining to the core measure of the survey that focused on participation in home, school and community life will be presented as well. METHODS: The follow-up survey was completed by sixty caregivers of children with ABI discharged from one pediatric inpatient rehabilitation program in the Northeast, USA. Time since discharge ranged from 4 months to 6.5 years. Children's ages at discharge ranged from 4 months to 21 years and at follow-up ranged from 3 to 27 years. RESULTS: Preliminary evidence of reliability, internal consistency and criterion-related validity was demonstrated for the participation measure. Results from exploratory factor analyses and Rasch analyses suggest that the participation measure may be measuring essentially one construct that may encompass two dimensions: Participation in movement-related activities and participation in communication and school-based social activities. Age, activity performance and child and environmental factors were associated with children's overall extent of participation. CONCLUSIONS: The results presented are preliminary yet promising. The follow-up survey is being further developed and tested. Future research also will investigate clinical utility, differences in scores among children and youth with different diagnostic conditions, and feasibility of creating separate versions of the participation measure for different age groups.

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.

Strategies to promote activity and participation in children and youths with acquired brain injuries.

Strategies used by hospital and community-based rehabilitation and educational professionals and parents for promoting activity performance and participation of children and youths with acquired brain injuries (ABI) in the hospital, at home, at school and in the community are described in this article. Semi-structured interviews with interdisciplinary staff from a pediatric rehabilitation hospital in the Northeast USA and focus groups comprised of hospital and community-based educational and rehabilitation professionals and parents were conducted. Interviews and focus groups were audiotaped, transcribed verbatim and qualitatively analyzed. The strategies described fell into three categories: Routine, Repetition, and Consistency; Supports and Models; and Curriculum and Environmental Modifications. In addition, three broader factors emerged related to the use of strategies: Communication; Age, Development and Recovery Time; and Attitudes and Expectations. Findings may provide insights to professionals and families to promote activity performance and participation in children and youth with acquired brain injuries across the continuum of care.

Participation readiness at discharge from inpatient rehabilitation in children and adolescents with acquired brain injuries.

OBJECTIVE: To describe the extent of readiness for participation in home, school and community life at discharge from inpatient rehabilitation and selected factors associated with participation readiness in children and adolescents with acquired brain injuries. METHODS: Staff from eight sites used retrospective review to complete a prototype clinical performance measure on up to 10 of their most recent discharges. Data were obtained on 65 children and adolescents, aged 6 months to 18 years (X = 9.5 years). The extent of participation readiness was analysed descriptively. Associations between selected variables and participation readiness were examined using correlation and multiple regression analyses. RESULTS: Only 3-27% of the children were deemed ready for age-expected participation at discharge in 15 domains of home, school and community life. Social behavioural activity performance at discharge explained 74% of the variance associated with participation readiness at discharge. CONCLUSIONS: The low percentage of children deemed ready for age-expected participation has implications for post-discharge programming, since 82% of the children were discharged home. Participation readiness may not be an easily achievable goal or may not be fully addressed during inpatient rehabilitation. Preliminary findings suggest that social-behavioural activity performance is a key variable to be considered in efforts to promote participation readiness.

Developing a responsive measure of change for paediatric brain injury inpatient rehabilitation.

PRIMARY OBJECTIVE: To describe conceptual and methodological issues to be addressed in developing a responsive clinical performance measure for paediatric brain injury inpatient rehabilitation. Selected statistical approaches used to examine responsiveness of two functional activity scales (daily and social behavioural activity) of a prototype measure are presented to illustrate these issues. RESEARCH DESIGN: Retrospective chart review. METHODS AND PROCEDURES: Data on 65 children, aged 6 months to 18 years (X = 9.5 years) were collected during 1998 and 1999 from eight sites in the USA. Responsiveness was examined using effect sizes and a number of parametric and non-parametric tests. MAIN OUTCOMES AND RESULTS: Significant improvements from admission to discharge were found on all item and scale scores (p < 0.001). Moderate significant relationships were found between activity scale change scores and external ratings of change. CONCLUSIONS: Findings provide evidence that the activity scales have the potential to be responsive and point to issues that will need to be addressed in future measurement development.