School experiences following traumatic brain injury: A longitudinal qualitative study.

BACKGROUND: This longitudinal qualitative study tracked students with traumatic brain injury (TBI) from hospital discharge through their return to school and then for an average of four years of school. OBJECTIVE: To better understand the experiences of students and parents in the education system following TBI. METHODS: Participants were parents and educators of 21 students with TBI. Interviews were conducted using open-ended questions and students were observed in the classroom. RESULTS: From these data, three themes were identified: lack of student tracking year to year, lack of educator training, and conflicting views between educators and parents about students' needs. These factors ultimately led to parent frustration and eventually conflict and deteriorating relationships between parents and educators. CONCLUSION: The results suggest that improving educator training could positively affect the factors identified and possibly mitigate parent frustration.

Seeking Out Social Learning: Online Self-Education in Parents of Children With Intellectual and Developmental Disabilities.

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown. We conducted focus groups to understand how parents use internet resources to learn about their children with IDD. Parents described using the internet to access information from trusted sources, find examples to apply their knowledge, and seek social support. Social learning theory, which posits that cognitive, behavioral, and social processes influence each other to support real-world learning, could provide a theoretical framework for unifying these findings and for designing efficacious online interventions.

Return to School Following TBI: Educational Services Received 1 Year After Injury.

BACKGROUND: Many children who experience a traumatic brain injury (TBI) return to school without receiving needed support services. OBJECTIVE: To identify services received and predictors of formal special education services (ie, Individualized Education Plan [IEP]) for students with TBI 1 year after returning to school. SETTING AND PARTICIPANTS: A total of 74 students with TBI recruited from children's hospitals in Colorado, Ohio, and Oregon. DESIGN: Secondary analysis of previously reported randomized control trials with surveys completed by caregivers when students returned to school (T1) and 1 year later (T2). This study reports data collected at T2. RESULTS: While 45% of students with TBI reported an IEP 1 year after returning to school, nearly 50% of students received informal or no services. Male students, those who sustained a severe TBI, and students whose parents reported domain-specific concerns were more likely to receive special education services at 1 year. In a multivariate model, sex remained the only significant predictor of IEP services at T2. CONCLUSIONS: Females and students with less severe or less visible deficits were less likely to receive special education services. While transition services may help students obtain special education for the first year after TBI, identifying students with TBI who have subtle or later-developing deficits remains a challenge.

Hospital to school transition following traumatic brain injury: A qualitative longitudinal study.

BACKGROUND: The transition from hospital to school is regarded by researchers as a key factor in the educational success of students with traumatic brain injury (TBI). OBJECTIVES: The objective of this study is to look closely at what transition services consist of, how they are delivered, and how they are received by educators. METHODS: Parents and educators of 21 students with TBI participated in a qualitative study of the delivery of transition services and implementation of hospital recommendations. RESULTS: This paper presents two themes that emerged from interview and observational data collected over a 7-year period: 1) provision of hospital-school transition services is inconsistent and 2) teachers lack sufficient awareness of and training in TBI to implement hospital transition recommendations. Regardless of the type and quality of transition support, most educators in the students' schools remained unaware of the students' needs and how to meet them. CONCLUSION: Recommendations include more consistent and specific communication between hospital and school for all students with TBI, long-term tracking of the injury in student files, and increased training of educators in how to meet the needs of students with TBI.

Results from a randomized trial evaluating a hospital-school transition support model for students hospitalized with traumatic brain injury.

OBJECTIVE: To evaluate the utility of the STEP model, a systematic hospital-school transition protocol for children hospitalized for TBI. SETTING: Five children's hospitals in Colorado, Ohio, and Oregon. PARTICIPANTS: Hundred families of children with mild, complicated mild, moderate, or severe TBI. DESIGN: Randomized controlled trial (RCT); participants were randomized while hospitalized to the STEP (a standardized hospital-school transition protocol for children treated for TBI) or usual care condition. MAIN MEASURES: Questionnaire about child's special education eligibility status, support services, and academic accommodations; Achenbach Child Behaviour Checklist (CBCL); Behaviour Rating Inventory of Executive Function (BRIEF); Child and Adolescent Scale of Participation (CASP); Child and Adolescent Scales of Environment (CASE) Results: There were no significant effects, indicating that STEP participants did not differ from usual care participants on any study outcome at one month post-discharge or at one-year follow-up. CONCLUSION: The lack of significant findings in this study does not imply that effective hospital-to-school transition programming is unnecessary. Rather, the findings raise important questions regarding timing and dosage/intensity of intervention, appropriate measurement of outcomes, and fidelity of programme delivery. The study highlights difficulties involved in the conduct of community-based RCTs in the paediatric TBI population.

Systematic instruction for individuals with acquired brain injury: results of a randomised controlled trial.

The goal of this study was to evaluate experimentally systematic instruction compared with trial-and-error learning (conventional instruction) applied to assistive technology for cognition (ATC), in a double-blind, pre-test-post-test, randomised controlled trial. Twenty-nine persons with moderate-severe cognitive impairments due to acquired brain injury (15 in systematic instruction group; 14 in conventional instruction) completed the study. Both groups received 12, 45-minute individual training sessions targeting selected skills on the Palm Tungsten E2 personal digital assistant (PDA). A criterion-based assessment of PDA skills was used to evaluate accuracy, fluency/efficiency, maintenance, and generalisation of skills. There were no significant differences between groups at immediate post-test with regard to accuracy and fluency. However, significant differences emerged at 30-day follow-up in favour of systematic instruction. Furthermore, systematic instruction participants performed significantly better at immediate post-test generalising trained PDA skills when interacting with people other than the instructor. These results demonstrate that systematic instruction applied to ATC results in better skill maintenance and generalisation than trial-and-error learning for individuals with moderate-severe cognitive impairments due to acquired brain injury. Implications, study limitations, and directions for future research are discussed.

Longitudinal investigation of the post-high school transition experiences of adolescents with traumatic brain injury.

OBJECTIVE: To describe outcomes for youth with traumatic brain injury (TBI) transitioning from high school to adulthood. DESIGN: Longitudinal design using univariate and multivariate analyses, including survival analysis to predict time to outcomes of interest and longitudinal growth modeling to evaluate factors that predict rates and levels of outcomes over time. MAIN OUTCOME MEASURES: : employment, post-secondary education, and independent living status. PARTICIPANTS: Eighty-nine youth and young adults (aged 19-25 years) with TBI (19 mild-moderate TBI and 70 severe TBI). RESULTS: Individuals entering adulthood following childhood TBI experienced fluctuations in rates of employment, enrollment in post-secondary education, and independent living. A higher likelihood of being enrolled in post-secondary education following graduation from high school was associated with being female, later age at injury, and higher socioeconomic status. Overall greater likelihood of employment was associated with higher socioeconomic status, while employment upon high school graduation was associated with more severe injury and lack of rehabilitations services. Greater likelihood of independent living was associated with later age at injury and nonreceipt of rehabilitation services, while shorter time until independent living was associated with less severe injury. CONCLUSION: Knowledge of how specific factors affect transition outcomes can be used to tailor transition interventions and resources to the needs of students with TBI. Findings related to special education and medical rehabilitation services should be interpreted with caution as the criteria for receipt of both types of services and the links between such services and functional outcomes are unclear.

Professional development in TBI for educators: the importance of context.

Effective instructional and behavioral support strategies implemented by trained educators can help mitigate the academic and behavioral challenges associated with childhood brain injury. However, the training provided by university teacher preparation programs is clearly inadequate, a problem that cuts across the professions that work with school-aged students. Educators need training in methods validated for students with traumatic brain injury (TBI) and in adapting strategies validated for students with other disabilities. Almost 10 years after Ylvisaker and colleagues proposed a research and professional development agenda in the area of teacher training, students with TBI continue to be underserved and underidentified for educational supports. Effective staff development practices for educators must include training in evidence-based interventions, supervised practice with new skills, and continued mentoring, feedback, and consultation in the school setting. Two models currently in use-the TBI Consulting Team and BrainSTARS models-incorporate those features. Preliminary evidence suggests that these models help teachers feel more prepared and knowledgeable in working with students with TBI. Given the urgent needs of students with TBI, validating these promising practices should be a high priority for the field of pediatric brain injury.

Validated instructional practices: application to students with traumatic brain injury.

OBJECTIVE: There is a lack of empirical evidence of effectiveness for instructional interventions for children with traumatic brain injury (TBI). This article addresses this issue by providing an in-depth examination of instructional methodologies validated with other populations of students (with and without disability) and their potential for teaching children with TBI. DESIGN: Literature review. CONCLUSIONS: Two instructional approaches--Direct Instruction and cognitive strategy intervention--have significant evidence supporting their use with many populations of children, with and without disabilities, and address many of the common needs and learning characteristics of students with TBI, thus showing particular promise for these students. Given the efficacy of these 2 approaches with students with similar learning and behavioral characteristics, the authors recommend establishing and funding a systematic research agenda to test their effectiveness with students with TBI.

Redefining success: results of a qualitative study of postsecondary transition outcomes for youth with traumatic brain injury.

OBJECTIVES: Identify factors that influence postsecondary education outcomes for students with traumatic brain injury (TBI). DESIGN: Qualitative longitudinal. PARTICIPANTS: Thirty-three young adults with TBI, their parents, and knowledgeable others. RESULTS: Students with TBI who received transition services that linked them with disability services and support agencies were more likely to complete postsecondary programs. Internal factors such as positive attitude and determination were also associated with success. CONCLUSIONS: Survey items measuring constructs such as "use of accommodations," "enrolled in special education," and "high school graduation" mask a range of experiences. Transition supports geared to the postsecondary education goals of students with TBI are needed.

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.

A profile of community navigation in adults with chronic cognitive impairments.

PRIMARY OBJECTIVE: This study sought to identify navigation patterns and illuminate the barriers to and possible solutions for independent community travel in people with chronic cognitive impairments as a result of acquired brain injury. RESEARCH DESIGN: Two investigative methods were used to explore navigation in the population of interest: Study 1 was a field study and study 2 convened a series of focus groups with relevant stakeholders. METHODS AND PROCEDURES: For study 1, each week during a 4 month period, researchers administered a navigational survey and structured interview to a typical case sample of six participants in order to catalogue all trips taken outside the assistive living facility. Study 2 convened six focus groups to access perspectives on navigational issues for individuals with cognitive impairments (CI) from a number of stakeholder groups including individuals with CI, care providers for this population and public transportation workers. CONCLUSIONS: The results of both studies were consistent and indicated that community access is severely restricted for individuals with CI. The majority of trips that were taken tended to be routine and assisted. The variety of travel was limited; participants ventured to the same set places with the same people. Participants described barriers accounting for these problems and suggested a number of strategies to minimize problems.

Rehabilitation and ongoing support after pediatric TBI: twenty years of progress.

This article summarizes major developments of the past 20 years in both acute and chronic management of children with traumatic brain injury. The article begins with brief summaries of developments in acute and rehabilitative medical management and physical rehabilitation. Because long-term cognitive, behavioral, academic, and family issues tend to be dominant after pediatric TBI, more attention is given to these topics. The article ends with a list of general themes that have been identified as critical in providing effective long-term services and supports to children with TBI and their families.

Improving educational services for students with TBI through statewide consulting teams.

Since 1991, when Traumatic Brain Injury (TBI) was established as a disability category under IDEA, educators nationwide have become increasingly aware of the unique and complex challenges these students present. Yet professionals, advocates and family members share a growing concern that the instructional needs of these students are not being met. School personnel serving these students need systematic support that includes both information about specific aspects of the student's disability and access to expert technical assistance. The goal of the TBI Team model, as developed and implemented in Iowa, Kansas, and Oregon, is to make available to schools statewide a group of well-trained peer consultants who can provide in-service training and ongoing consultation. The TBI Team model has four components: (a) needs assessment, (b) team recruitment, (c) team training, and (d) evaluation of both implementation and outcomes. Trained Team members provide in-service training, classroom consultation, and information and resources for school staff and parents. Team operations are maintained and supported through a central office at the Department of Education. Evaluation data suggest that the Team model is a cost effective and efficient approach to supporting teachers who work with students with TBI.