Impact of traumatic brain injury on social cognition in adolescents and contribution of other higher order cognitive functions.

Social cognition impairments can contribute to social participation difficulties following traumatic brain injury (TBI). However, little attention has been given to these impairments during adolescence, a period of life when peer relationships are central. The aim of the current study was to examine the impact of a moderate to severe TBI sustained in adolescence on multiple facets of social cognition. Twenty-three adolescents who had sustained a moderate-to-severe TBI were compared with a group of 23 typically developing peers. The Integrated Social Cognition Battery (mentalising, social knowledge, emotion recognition) and the Interpersonal Reactivity Index were administered, along with non-social cognition tests (selective attention, working memory, executive functions), IQ estimation, and a socio-demographic questionnaire. Adolescents with TBI reported having a significantly lower ability to take other people's perspectives versus controls. They also presented significantly lower levels of mentalising. After controlling for non-social higher-order cognitive variables, the group effect on mentalising remained marginally significant, whereas the effect on perspective taking remained significant. Our findings suggest the presence of primary deficits in social cognition following TBI in adolescence. These deficits could partially underlie the social reintegration difficulties encountered following TBI. A systematic assessment of social cognition in clinical practice is necessary.

Development and validation of the ICF-CY-Based Functioning Scale of the Disability Evaluation System--Child Version in Taiwan.

BACKGROUND/PURPOSE: The International Classification of Functioning, Disability, and Health-Children and Youth version (ICF-CY) depicts human functioning [body functions (b), structures (s), and activities and participation (d) components] as the product of the interaction between health conditions and contextual factors [environmental factors (e) and personal factors]. In Taiwan, testers use the Functioning Scale of the Disability Evaluation System-Child version (FUNDES-Child) to collect information related to b, d, and e for children aged 6.0-17.9 years in the Disability Eligibility System (DES). The purpose of this study was to examine the content and construct validity of the FUNDES-Child. METHODS: We developed the FUNDES-Child through translating the existing questionnaires, cross-cultural adaptation, expert consensus, and field tests. Consensus meetings were conducted to link items from the FUNDES-Child to ICF-CY codes. To investigate construct validity, we examined associations among scores from the FUNDES-Child that reflected ICF-CY chapter-linked components. RESULTS: The FUNDES-Child items were successfully linked to all nine d-, five b-, and four e-chapters of the ICF-CY. Moderate correlations were found between scores that were expected to be related to specific chapters in the b, d, and e components. The scores of the b-chapters had stronger relationships with the d independence scores, while attitudes of others (e4) had stronger relationships with the d participation frequency scores. CONCLUSION: The FUNDES-Child had acceptable content validity and construct validity in the DES. The associations found among the ICF-CY chapter scores provided a model for investigating the impact of body functions and environmental factors on children's activities and participation.

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 children's 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 child's 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 children's participation across different settings and, therefore, support the development of interventions targeting modifiable environmental factors.

Community participation, supports, and barriers of school-age children with and without disabilities.

OBJECTIVE: To examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities. DESIGN: Cross-sectional, descriptive, and exploratory study. SETTING: Parents from the United States and Canada completed the main outcome measure online in their homes or communities. PARTICIPANTS: Parents (N=576) reported on their children aged 5 to 17 years with disabilities (n=282) and without disabilities (n=294). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation and Environment Measure for Children and Youth. RESULTS: Group differences in summary scores and many items were significant (P<.001). Children with disabilities participated less frequently, were less involved, and had less environmental support in the community than children without disabilities. Parents of children with disabilities desired more change in their child's participation than parents of children without disabilities. Effect sizes for summary scores were moderate to very large (n(2)p from .11-.40), with the largest group difference found in environment scores. Overall, the largest group differences in participation were in "unstructured physical activities" and "getting together with other children"-also the 2 areas where parents of children with disabilities most frequently desired change. The largest differences in environmental impact were in physical, social, and cognitive activity demands and availability/adequacy of programs and services. CONCLUSIONS: Results provide insights about where greater efforts are needed to support community participation of school-age children with disabilities. Further study with a more diverse sample in terms of race/ethnicity, family income/education levels, and geographic region is needed to determine the extent to which results may be generalized.

Social Participation and Navigation: Formative Evaluation of a Remote Intervention for Autistic Adolescents and Young Adults.

Remote interventions can uniquely benefit and significantly increase the motivation/engagement of autistic adolescents and young adults (AYA) in intervention processes. The evidence-based, technology-based Social Participation and Navigation (SPAN), originally a remote intervention for AYA with traumatic brain injuries, shows great promise for autistic AYA. This formative evaluation aimed to inform SPAN adaptations for autistic AYA. Fifteen researcher and clinician stakeholders provided feedback and modification recommendations via a semistructured interview. Stakeholders described potential participants who might benefit, intervention goals, intervention delivery procedures, and additional program-content and technology suggestions, including original components to preserve or adjust. Findings provided a basis for developing a new SPAN-ASD website and intervention manual. The next steps include assessing website usability and feasibility and a pilot implementation study of SPAN-ASD with autistic AYA.

SPAN Website for Remote Intervention with Autistic Adolescents and Young Adults: Feasibility and Usability.

Adolescents and young adults (AYA) with autism spectrum disorders (ASD) report less functional independence and social participation than their neurotypical peers. Remotely delivered interventions may allow autistic AYA to promote their independence, social participation, and wellbeing as they transition to adulthood. Social Participation and Navigation (SPAN) is a technology-based remotely delivered intervention initially developed for AYA with acquired brain injuries. The SPAN (website, application, and intervention manual) was modified to address the needs of AYA with autism (SPAN-ASD). This study examined the SPAN-ASD website and web application's feasibility and usability. Participants comprised 12 autistic AYA and 18 practitioners (all occupational therapists) with more than 1 year of experience in working with autistic AYA. All navigated the SPAN-ASD website and goal-management application. Practitioners completed the SPAN-ASD components and the Usefulness, Satisfaction, and Ease of Use questionnaires; AYA completed the System Usability Scale. The practitioners' average feasibility scores ranged from 4.30 to 4.68 (high); the overall usability score was 5.77 (good). The autistic AYA rated SPAN-ASD as a good, acceptable, and useful tool. Content analysis and item-level ratings indicated some needed improvements. Practitioners and autistic AYA perceived the SPAN-ASD website and application as highly feasible and usable, with excellent potential for technology-supported interventions.

Parent strategies for addressing the needs of their newly adopted child.

The purpose of this study was to describe reflections of nine American parents on the strengths, challenges, and strategies in parenting young children newly adopted from another country. Eight mothers and one father with an adopted child aged <3 years and home for <3 months completed standardized assessments measuring the child's social emotional development, sensory processing, and parental stress. Each parent participated in qualitative interview to discuss challenges and strategies helpful in addressing their children's needs. All parents reported challenges addressing their child's needs in the areas of sleep, feeding, attachment and self-regulation, and soothing. Parents reported similar strategies to address their child's behavioral concerns. Parents also reported on family factors and community resources that supported the success of the adoption. Although many families described their adoptive child as having challenges with multiple daily life activities, parents reported being able to create effective strategies to address many of these challenging behaviors.

Communication and Social Interaction Experiences of Youths With Congenital Motor Speech Disorders.

PURPOSE: The purpose of this study was to explore the communication and social interaction experiences of adolescents with congenital motor speech disorders due to cerebral palsy or Down syndrome, with the aim of identifying clinical and research needs to support the development and implementation of speech-language interventions. METHOD: Five male youths (ages 14-18 years) with congenital motor speech disorders and one of their parents participated in face-to-face, semistructured interviews designed to understand communication and social experiences in daily life. Interviews were audio-recorded and orthographically transcribed offline. Content was coded according to topic areas emerging in the data. Themes were developed to illustrate the most salient and representative aspects of participants' experiences according to the phenomenological tradition that recognizes that participants are experts in their "lived experience." RESULTS: Participants described the youths' day-to-day communication experiences, including facilitators and barriers to successful social interactions. Thematic analysis revealed three main themes: (a) strong core relationships amidst sparse, superficial interactions in daily life; (b) the complicated picture of why; and (c) how speech-language pathologists can help. CONCLUSIONS: Participants reported that the impact of congenital motor speech disorders on social interactions and experiences became more apparent in adolescence than in earlier childhood. Addressing communication challenges to meet the unique social demands of this period requires tailored interventions that target multiple contributing factors beyond speech impairment, such as social communication skills, negative communication partner attitudes, and participation opportunities. Shifting practice toward a life participation approach to communication intervention stands to substantially improve the long-term social outcomes of adolescents with motor speech disorders.

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). METHOD: The PEM-CY examines participation frequency, extent of involvement, and desire for change in sets of activities typical for the home, school, or community. Items in the 'Environment' section examine perceived supports and barriers to participation within each setting. Data were collected via an online survey from caregivers of children and young people, aged 5 to 17 years, with and without a range of different disabilities, residing in the USA and Canada. Caregivers were eligible for inclusion if (1) they identified themselves as a parent or legal guardian of the child who was the focus of the survey; (2) they were able to read English; and (3) their child was between 5 and 17 years old at the time of enrolment. RESULTS: Data were obtained from 576 respondents. About half were parents of children with disabilities and a little more than half were from Canada. Child mean age was 11 years (SD 3.1y); 54% were male and 46% were female. Internal consistency was moderate to good (0.59 and above) across the different scales. Test-retest reliability was moderate to good (0.58 and above) across a 1- to 4-week period. There were large and significant differences between the groups with and without disabilities on all participation and environment scales. Although there were some significant age differences, they did not follow a consistent pattern. INTERPRETATION: Results support the use of the PEM-CY for population-level studies to gain a better understanding of the participation of children and young people and the impact of environmental factors on their participation.

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.

Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients' and Parents' Perspective.

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5-24 years) with ABI and investigating differences between patients' and parents' perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0-100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients' age was 14 years (IQR; 11-16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5-90) and by parents 91.3 (IQR: 80.0-97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as 'very-limited'. Twenty-six percent of children and young adults referred for rehabilitation after ABI had "very-limited" participation. Overall, parents rated their child's participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment.

Structural Validity of an ICF-Based Measure of Activity and Participation for Children in Taiwan's Disability Eligibility Determination System.

To assess activity and participation for children in Taiwan's Disability Eligibility Determination System (DEDS), we developed a questionnaire, the Functioning Disability Evaluation Scale (FUNDES-Child), based on the Child and Adolescent Scale of Participation (CASP). The study follows a methodology research design to investigate the construct validity of the frequency and independence dimensions of FUNDES-Child 7.0. Two samples were randomly stratified from the databank of 13,835 children and youth with disabilities aged 6.0-17.9 years to examine structural validity by exploratory factor analysis (EFA, n = 4111, mean age of 11.3 ± 3.5) and confirmatory factor analysis (CFA, n = 4823, mean age of 11.4 ± 3.5)). EFA indicated a 4-factor structure for the frequency dimension (51.3% variance explained) and a 2-factor structure for the independence dimension (53.6% variance explained). The CFA indicated that the second-order factor structures of both dimensions were more parsimonious with adequate fit indices (Goodness fit Index, GFI; Normed Fit Index, NFI; Comparative Fit Index, CFI; and Tucker-Lewis Index, TLI ≥ 0.95, Root Mean Square Error of Approximation, RMSEA < 0.06). Results provide evidence that the participation part of FUNDES-Child 7.0 has acceptable structural validity for use in Taiwan's DEDS. Utility of FUNDES-Child 7.0 in rehabilitation, welfare, and educational services needs further study.

Measuring participation of school-aged children with traumatic brain injuries: considerations and approaches.

This article discusses key issues to consider and selected approaches for assessing participation of school-aged children with traumatic brain injury. Approaches discussed include measures that explicitly assess participation, subsections from other measures that implicitly assess participation, and tailored methods that assess outcomes linked to person-centered goals or programs and interventions that address participation. Key considerations discussed include what should be measured, how should it be measured, what is the level of focus (individual, program, or population), and how does or could the selected approach address stakeholders' "information goals," that is, what stakeholders want and need to know?

Return to school following childhood TBI: who gets services?

Long-term follow-up studies of children conducted during the K-12 school years suggest that problems associated with TBI tend to persist or worsen as children progress through school. A critical issue in service delivery for students with TBI is the significant discrepancy between the incidence of TBI and the identification of children with TBI for special education services. The purpose of this study was to examine factors that influence identification and service practices for students with TBI. Parents of 56 youth with TBI completed a questionnaire and interview about the hospital-school transition and educational services provided within the first year of school re-entry. A subsample participated in a concurrent qualitative study. Results document that 25% of the sample were identified for formal services (via individual education plan or 504 plan) while over 41% received informal supports (e.g., schedule change, extra time on tests). Results from chi-square and logistic regression analyses suggest that injury severity and hospital-school transition services (e.g., written or verbal communication between hospital and school) were related to the provision of formal special education or 504 services. A critical factor contributing to the identification of students with TBI for special education is the link between hospital and school.

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.

Balancing health, work, and daily life: design and evaluation of a pilot intervention for persons with HIV/AIDS.

PURPOSE: To design and evaluate a pilot intervention to promote self-management skills and work transition for persons with HIV/AIDS. The seven-week group intervention consisted of 1.5-hour bi-weekly sessions focused on goal setting and developing strategies to manage health, work and daily life routines while participating in a job skills training program in New York City. METHODS: Six successive groups received the intervention over the course of two years (n = 53). Existing and newly-developed measures were used to examine key outcomes. Differences between pre-intervention and post-intervention scores on outcome measures were examined using paired-tests and effect sizes. Employment outcomes and participant satisfaction were examined post-intervention. RESULTS: The intervention was feasible to implement and sessions were viewed favorably by the majority of participants. Moderate to large effect sizes were found immediately post-intervention in participants' perceived ability to work and balance health, work and daily life. Fifty two percent of the participants were working part or full time and 41% were actively searching for employment at three to five months follow-up. Small effect sizes demonstrating improved outcomes at follow-up were found in symptom severity, self-advocacy and medication adherence self-efficacy. Small effect sizes demonstrating a potential decrement in outcomes at follow-up were found in participants' need satisfaction and perceived symptom impact on work performance. CONCLUSIONS: The results are promising, but further research is needed due to design limitations and the preliminary nature of the intervention and measures used. The potential decrement in outcomes might reflect a shift in participants' needs or view of how their health affected work performance and suggests that ongoing supports were needed post-intervention.

Responsiveness and discriminant validity of the Child and Adolescent Scale of Participation across three years for children and youth with traumatic brain injury.

PURPOSE: To examine responsiveness and discriminant validity of the Child and Adolescent Scale of Participation (CASP) across three years. METHODS: Examined longitudinal data on 515 children and youth with TBI and arm injuries. Repeated measures analyses of variance were used to examine CASP scores (pre-injury; 3, 12, 24, 36 months post-injury). RESULTS: Scores decreased from pre-injury to 3 months, but significantly only for moderate and severe TBI groups. Scores gradually increased post-injury for all groups except severe TBI. Scores were consistently lowest for severe TBI, followed by moderate TBI, mild TBI, and arm injury across time. Severe TBI scores were significantly lower than scores for mild TBI and arm injury, but not moderate TBI. CONCLUSIONS: CASP scores were responsive to change over time at most measurements and differentiated between groups, particularly severe TBI. Further research is needed with a larger sample of children with moderate/severe TBI as they were underrepresented in this study.

Social Participation and Navigation (SPAN): Description and usability of app-based coaching intervention for adolescents with TBI.

BACKGROUND: Adolescents with brain injury (BI) often experience impairment in participation, which is an important predictor of outcomes. OBJECTIVE: Describe the Social Participation and Navigation (SPAN) program, and report participant feedback and preliminary outcomes. METHOD: Four adolescents and four coaches participated. SPAN included a mobile app, online didactic information, and peer coaching. Adolescents met weekly with coaches via video-conference, developed participation goals, and plans to achieve goals. Social and behavioral functioning before and after was assessed, and feedback about SPAN was collected. RESULTS: SPAN was well received. Participants used the app to define and achieve goals. Medium to large effect sizes were found on adolescent self-reported measures, with negligible effects on parent-report measures. Positive and critical feedback is described. CONCLUSIONS: Findings support the usability of SPAN, which has the potential to improve social participation of adolescents with a history of TBI through an innovative use of technology and peer coaching.

Social Participation and Navigation (SPAN) program for adolescents with acquired brain injury: Pilot findings.

PURPOSE/OBJECTIVE: Our goal was to examine the feasibility and preliminary efficacy of an app-based coaching intervention (Social Participation and Navigation; SPAN) to help survivors of acquired brain injury attain social participation goals. Research Method/Design: This is a nonrandomized pilot trial of SPAN, including 15 adolescents (9 with traumatic brain injury, 6 with brain tumor) between the ages of 14-22. The SPAN intervention consisted of a mobile app to support the development and implementation of social participation goals, weekly video-conference coaching sessions to identify goals and step-by-step action plans, and online didactic materials. Assessments were completed pre- and postintervention. Satisfaction with the intervention, confidence in the adolescents' ability to participate in and plan social activities and manage their emotions and behaviors, and frequency and satisfaction with social participation were assessed via self- and parent-report questionnaires developed for this project. Behavior problems, social competence, and social problems were measured by using the Child Behavior Checklist and the Youth Self-Report. RESULTS: High levels of participant and parent satisfaction were reported. Increases in parent-reported frequency of social participation and teen-reported confidence in their ability to participate and develop social participation goals and plans were observed. A decline in parent-reported total problems, internalizing problems, externalizing problems, and social problems was noted. CONCLUSION/IMPLICATIONS: Results support the feasibility of the program, because participants were able to successfully meet with their coaches and use the app to develop and accomplish social participation goals. Further research will be needed to refine the app and program, particularly when reaching out to populations beyond traumatic brain injury. (PsycINFO Database Record

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).