APPLIED NEUROPSYCHOLOGY, 17: 116122, 2010 Copyright # Taylor & Francis Group, LLC ISSN: 0908-4282 print=1532-4826 online

DOI: 10.1080/09084281003708985

Pediatric Traumatic Brain Injury: Rehabilitation and Transition to Home and School
Margaret Semrud-Clikeman
Departments of Psychology and Psychiatry, Michigan State University, East Lansing, Michigan

The purpose of this review is to provide a summary of the empirical research on rehabilitation in pediatric traumatic brain injury (TBI). Studies of the effectiveness of interventions with children with TBI are hampered by difculty with combining subjects with various levels of TBI, problems with random assignment to treatment groups, and varying age levels at injury. While these are areas of concern, there are emerging studies that indicate both applied behavioral analysis (ABA) and positive behavioral interventions are helpful to many children. For some children, ABA is not successful, and a shift to positive behavioral interventions has been found to be helpful. Transitions to home and school can be difcult particularly if there are family issues that predated the injury. This review provides additional information for the pediatric neuropsychologist to assist with transition to school and home. Studies utilizing the Internet for family interventions have revealed promising results. This review suggests that additional studies as to the efcacy of interventions following TBI are needed particularly to evaluate outcomes after initial recovery and at follow-up. In addition, this review suggests that an important role for pediatric neuropsychologists is to provide support for schools and families through therapy and inservices for school personnel on TBI.

Key words:

children, rehabilitation, TBI, treatment

Traumatic brain injury (TBI) is one of the more common causes of disability for children aged 5 to 14 (Anderson, Catroppa, Morse, Haritou, & Rosenfeld, 2001). Difculties are frequently seen in cognition, achievement, language, attention, executive functioning, and behavior following TBI particularly in severe cases (SemrudClikeman, 2001). Each of these areas is particularly important for a comprehensive neuropsychological evaluation to determine the strengths and weaknesses of the patient as well as to plan for intervention. The purpose of this article is to provide a brief overview of the research involving rehabilitation following pediatric TBI as well as to present information about transitions from hospital to home and then reentry to school.
Address correspondence to Margaret Semrud-Clikeman, Ph.D., Michigan State University, 321 A West Fee Hall, East Lansing, MI 48824. E-mail: semrudcl@msu.edu

RECOVERY VARIABLES Research on the outcome of TBI has found difculties with disinhibition, irritability, aggression, anger dyscontrol, social decits and withdrawal, and depression to be commonly associated with poorer outcome following TBI (Ylvisaker et al., 2007). It has been estimated that a sizable majority of children with severe TBI experience difculties following head injury, not present before injury, that persist at least 2 years post-injury (Max et al., 1997). Most importantly, these difculties have been found to interfere with quality of life into adulthood more than cognitive or physical disabilities (Nybo, Sainio, & Muller, 2004). For children with mild head injury, difculty with irritability has been seen to persist 12 months after injury in one-third of cases (Deb, Lyons, & Koutzoukis, 1999). Aggression has also been found to be present in 33% of children with TBI and

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appears to be independent of level of injury (Tateno, Jorge, & Robinson, 2003). A review of intervention articles following TBI suggests that children (and adults) show more externalizing behaviors following TBI in general (Ylvisaker et al., 2007). Age at injury, however, appears related to a higher incidence of internalizing symptoms when the child is injured before the age of 6, with externalizing behaviors increasing in this population with age (Geraldina et al., 2003).

INTERVENTIONS There are very few studies of intervention outcome solely for children and adolescents. Most of the intervention studies available are completed with adults and yield varying results. A National Institutes of Health panel studied the cognitive rehabilitation literature as to the effectiveness of various treatments (Carney, Chestnut, Maynard, Mann, & Heand, 1999; National Institute of Mental Health [NIMH], 1999). Findings indicated that the understanding of cognitive rehabilitation outcomes was complicated by the heterogeneity of participants, interventions used, and diversity of outcome measures. Recent systematic reviews have suggested that direct attention training, specic treatments of visuospatial decits, long-term cognitive therapy, and learning of compensatory techniques have been found to be successful interventions for adults (Jutai et al., 2003; Lincoln, Majid, & Weyman, 2000; Sohlberg et al., 2003; Wilson, 2005). Interventions can be divided into two classes: (1) direct intervention to retrain cognitive processes and (2) teaching of compensatory skills. In the rst approach, direct intervention is given to individual cognitive processes, while the second approach involves reteaching and training based on cognitive skills that are intact. In the rst approach, it is hypothesized that damaged neural networks can be retrained if partially spared from injury (Robertson & Murre, 1999). These interventions are frequently used immediately following recovery from the injury. The second approach teaches skills to manage tasks that are present in everyday life, such as driving, balancing a checkbook, and using a computer, and assumes that functional brain reorganization will occur with this training (Park & Ingles, 2001; Vanderploeg et al., 2006). Two large reviews of the literature on head injury concluded that, for adults, empirically valid interventions are present for treatment for attention, executive functioning, and functional language impairments following TBI as well as for teaching of memory strategies (Cicerone et al., 2000; Cicerone et al., 2005). Although an updated meta-analysis from these authors combining both child and adult studies also found empirical

evidence for attention training following TBI, the effect size was signicant but small for attention improvement (Cicerone, Faust, Beverly, & Demakis, 2009). The effectiveness of direct training in memory strategies was not found in this third meta-analysis. A meta-analysis of behavioral interventions following TBI utilized both adult and child studies (Ylvisaker et al., 2007). Approximately one-third of the 65 studies reviewed involved children or adolescents, and out of these studies, more than half were case studies. Thus, the conclusions from this review need to be viewed cautiously. Findings indicated that traditional applied behavioral analysis (ABA) and positive behavior support are helpful and empirically valid approaches. These approaches, although evidence-based treatment options, also suffered from signicant methodological concerns making the ndings somewhat tentative. Difculties with denitions of the sample employed, varying outcome measures, and lack of random assignment to treatment groups were some of the methodological concerns. Within the traditional ABA approach, the focus was on specic behaviors with emphasis on increasing the frequency of positive behaviors and decreasing negative behaviors with additional emphasis on a consistent application of consequences for behaviors (Ylvisaker et al., 2007). Most commonly used interventions included reinforcement of positive behaviors, token economies, time out, and ignoring of negative behaviors. In addition, extrinsic reinforcers were used to support and increase targeted behaviors. Desired behavioral changes were set up in a sequential manner building on strengths and previously mastered skills and moving toward transfer of the behavior to new environments. Most of these interventions were provided by specialists within classrooms, residential treatment settings, or clinics. In contrast to the ABA treatments, the positive behavior intervention focused on lifestyle changes that are important to the client and caregivers with secondary focus on target behaviors (Ylvisaker et al., 2007). While the focus for ABA was on external control, the focus for positive behavior intervention was on internal control. It was also frequently combined with training in executive functioning. In addition to evaluating the persons behavior, positive behavioral intervention also evaluates the environment of the person and lifestyle variables. Moreover, there is focus on structuring the environment to be as positive as possible and to increase choice and control for the client as progress is made. These interventions are most often provided in community settings with the caregivers providing much of the intervention supported by specialists. Ylvisaker et al. (2007) found that both ABA and positive intervention strategies can be effective for treatment. What is not obvious from the comparison is which treatment is appropriate for which individual or

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for which specic brain injury. Further study on type of individual, time from injury, and type of behavior problem is needed to determine appropriate interventions. In addition to these concerns, it is likely that interventions that are appropriate for older adolescents or young adults may not be as appropriate or helpful for younger subjects. This concern was not evaluated in the Ylvisaker et al. (2007) review of the existing literature. Support for this conclusion comes from studies nding that a contingency technique may not be helpful for a particular individual who may, in turn, respond well to a positive behavioral intervention (Feeney & Ylvisaker, 2008; Fyffe, Kahng, Fittro, & Russell, 2004; Zenicus, Wesolowski, & Burke, 1989). Feeney and Ylvisaker (2008) found that using cognitive behavioral interventions that are coupled with positive behavior supports were successful with two young children with severe TBI and increasingly challenging behaviors. Such a combination of positive behavior intervention and ABA is likely appropriate for many children and adolescents. Although there is emerging evidence that this combination may be efcacious for children and adults with TBI, additional empirical study is needed. One aspect that requires additional study, similarly to the intervention issue, is transition from hospital to home, family intervention, and support during this process as well as family support during transition to school. A survey of researchers and professionals involved in the care of children and adolescents with TBI identied these transitions as understudied (Ylvisaker et al., 2001). Such transitions to home can be difcult particularly if there are challenges the family is facing beyond the TBI. The following section discusses issues in the transition to home from the hospital.

TRANSITION TO HOME It is very important to recognize that there are signicant stressors on the family unit following TBI, particularly when the injury has been severe. Families of a child with severe TBI who have a history of signicant discord and stress prior to the accident are at highest risk for experiencing additional difculty following the injury. Conversely, families with a history of good communication and cohesiveness generally have a more favorable outcome. Research is emerging that the main predictor for a good outcome may not be the injury itself but rather the childs environment following such injury (Taylor et al., 2002; Wade, Carey, & Wolfe, 2006b). Similar to the nding that premorbid behavioral and personality disturbances are predictive of similar problems after the injury, family discord prior to an injury is highly predictive of divorce, social isolation,

and substance abuse following the TBI (Anderson, Catroppa, Haritou, Morse, & Rosenfeld, 2005). It has been suggested that there are two burdens that families experience during the recovery of their child which are objective and subjective (Conoley & Sheridan, 1996). Objective burdens include the childs neuropsychological and cognitive decits, while subjective burdens are those that concern the level of distress experienced by family members. The mother of the child with TBI often experiences the subjective burden more than other members of the family, and this emotional toll often is more predictive of family distress compared with the objective burden (Allen, Linn, Gutierrez, & Willer, 1994). The outward expression of these subjective burdens includes frustration, anger, lability, depression, and overprotection (Brooks, 1991). The subjective burdens increase throughout time, with eventual outcomes including divorce, substance abuse, and social isolation (Conoley & Sheridan). Interventions that families report to be most helpful include information about the childs health, educational programs available to the child, and community agencies available for assistance (Miller, 1993). Understandable information about the childs injury and nature of decits was also deemed important. This information may need to be repeated frequently with additional details and depth provided as the child recovers. Too many details or too much information at one time may serve only to confuse rather than provide assistance (Lezak, Howieson, & Loring, 2004). Lezak (1988) suggests it is important to inform parents that recovery is not an all-or-none process. Some skills will recover fairly quickly while others may require several months to reappear. Another area that is important to evaluate is whether the parent needs a respite from the childs and encouragement to look after their own emotional health. Parents of children with severe TBI are at high risk for developing affective disorders as well as marital discord and even divorce. It is also important for the parent to recognize that the child may resist some of the assistance provided and may confront the parent in ways that are uncomfortable and difcult to manage (Anderson, Morse, Catroppa, Haritou, & Rosenfeld, 2004). Studies of interventions that involve self-guided Web-based materials as well as videoconferencing with families are emerging. These interventions are unusual as they include random assignment to treatment. In one study, families were randomly assigned to an online family problem-solving group while others received Internet resources (Wade et al., 2006b). Findings revealed less global distress particularly in depressive symptoms and in anxiety at follow-up in the children in the family problem-solving group compared with the resources group. In addition, children in the

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family problem-solving group showed improvement in problem-solving skills. Similarly, another study conducted by the same authors compared an online family problem-solving group to an Internet resources comparison group for families with a child with moderate-to-severe TBI (Wade, Carey, & Wolfe, 2006a). The family problemsolving group showed more improvement in child self-management and compliance with adult directions at follow-up compared with the resources group. The greatest improvement was found for children who were older or who came from a lower socio-economic status (SES). An area of importance for working with families as the child transitions from hospital to home to school is to develop a home-school partnership. Success with the transition to school is dependent on the ability of the school and parent to reach a common understanding, to be exible in adjusting to changing demands from the child, and to nd appropriate supports within the school and community (Semrud-Clikeman, 2001). The ability to utilize home-school partnerships is particularly important for a smooth transition to the school setting and for the adjustment of the educational plan as needed. The use of conjoint consultation to assist with problem resolution is particularly important and has been found helpful. The childs needs are dynamic and ever changing, and such a partnership allows for the adjustment of techniques that may not be optimal. These partnerships evolve throughout time and with care and nurturing and provide a safety net for the child as well as direction for future requirements.

Gerring, 1986). Aspects that have been found to be predictive of successful school reintegration include: (1) ability to attend to classroom instruction; (2) ability to understand and retain information; (3) ability to reason and express ideas; (4) ability to problem-solve; (5) ability to plan and monitor ones own performance; and (6) self-control (Cohen, 1996). For successful reentry into school, early planning is required among professionals in the hospital setting and those in the school (DePompei & Blosser, 1993). Information that is most helpful includes what types of tasks the child=adolescent is currently able to complete as well as those that may develop at a later time. The individual education plan (IEP) developed for discharge needs to include the levels of performance, goals, and objectives (short and long term), need for related services (occupational therapy [OT], physical therapy [PT], speech and language therapy), the anticipated duration of services, and methods for evaluation of the childs progress (Carter & Savage, 1985). Additional information may include whether there is a recommendations for a half or full day of school; medications and their side effects; therapy required; emotional and behavioral functioning; physical plant accommodations that may be needed; and methods that have been successful in working with the child. In addition, a plan needs to be made to provide for additional communications among the team members. Systems Issues in School Reentry One of the main predictors for good outcome from TBI is the recognition of possible difculties in the system that may impede the childs progress (Ylvisaker, Feeney, & Urbanczyk, 1993). Particular areas of systems concern include the school environment, teacher exibility, and number and quality of peer interactions that occur (Semrud-Clikeman, Kutz, & Strassner, 2005). Learning environments have also been found to be key in assisting the child with the transition to the school. Aspects of the classroom that have been found to be important include whether the classroom is structured or unstructured, whether the work is mainly independent or teacher led, and the use of classroom materials in related services such as OT, PT, and speech and language therapy (Semrud-Clikeman & Ellison, 2009).

PROMOTING REENTRY INTO THE SCHOOL SETTING Successful reentry into the school during the recovery process requires the coordination of all systems in the childs life: home, school, and medical. The past emphasis in rehabilitation has basically centered on restoring physical functioning to the neglect of social-emotional and behavioral recovery (NIMH, 1998). It is estimated that 70% of children with severe head injuries and 40% of those with moderate injuries will require some special education services due to residual disability (Kinsella et al., 1997). Based on the literature, approximately 20% of children with history of a head injury had special education needs that predated the injury (ArroyosJurado, Paulsen, Merrell, Lindgren, & Max, 2000). Placements can range from residential treatment, to homebound instruction, to school entry with modied day. For most children, a stepwise transition to school is very helpful beginning with a half-day placement with time in school increasing during recovery (Rosen &

TRANSITION TO ADULTHOOD An important aspect of the intervention process for adolescents involves planning for life after high school graduation. There are additional challenges for older adolescents as injury may interfere with normal developmental transitions such as driving, peer relations, and

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high school graduation (Saxe, Carey, & Kanwisher, 2004). Thus, for the adolescent, the transition to the adult world may be more problematic and require additional planning and the development of an appropriate individualized transition plan. Such a plan would include a relevant assessment of the adolescents needs as well as consideration of the type of instruction required, needs for daily living, community resources, employment, and a vocational evaluation (Ylvisaker et al., 2007). The timing of this plan is dependent on the severity of the needs of the adolescent as well as their prognosis for future vocational functioning; however, this generally occurs between the ages of 14 and 16. These linkages become particularly important as the child prepares to leave the school environment between the ages of 18 and 21 generally. A state case worker from a department of vocational rehabilitation can be very helpful for adolescents with severe TBI. Adolescents with severe and ongoing impairment are often best served by staying in high school until the age of 21. The use of hands-on work experience can be invaluable in providing a smoother transition to work environments as well as an appropriate evaluation of the adolescents work skills. Particularly important aspects to be evaluated include the adolescents ability to process information quickly, to handle frustration and ambiguous situations, and to manage social situations as well as the usual evaluation of cognitive and learning skills (Conklin, Salorio, & Slomine, 2008). Many adolescents with severe TBI fail the rst job placement; however, when a job coach and additional planning is provided, the second placement is often successful (Bergland, 1996). Some adolescents are able and motivated to attend college, and they need to be linked up to the ofce of students with disabilities at the university or college chosen for attendance. Such a transition needs to begin prior to college entry so that interventions are available immediately. Some areas that need to be explored to choose the most appropriate university or college include the following: physical accessibility to buildings, faculty and staff awareness of the needs of people with disabilities, and availability of counseling services both for emotional issues as well as career and vocational needs. In addition, universities and colleges will vary in the willingness of professors to share syllabi and lecture notes, to provide peer note-takers, and to provide exibility in test taking. Another area that needs to be explored is the opportunities on campus for social interactions for persons with disabilities. Although services are mandated to be provided by law, these services are far different from those provided in the K-12 arena (Maegden & Semrud-Clikeman, 2007). Students at the college=university level must seek out services and provide documentation that they qualify for such services.

These aspects are important to consider when making the transition to college.

CONCLUSION In summary, studies have indicated that children with severe TBI show signicant difculties with emotional and behavioral adjustment that pose more challenges for intervention and reentry to home and school compared with cognitive and physical issues. Improvements with intervention have been found in the areas of attention, in the teaching of memory strategies, and in the improvement of visual-spatial skills. Short-term memory and language skills continue to be difcult to remediate. In addition, irritability, aggression, and social isolation have been found in children and adolescents with TBI and appear to increase with time possibly due to increased frustration as skills do not return to normal for the child. Difculties with mood lability, aggression, and social isolation interfere with emotional development. Such problems often extend into adulthood and negatively impact vocational and personal adjustment. There is a signicant lack of controlled studies to inform what interventions are appropriate for which types of disabilities. Reentry into school is another area of concern for children and adolescents with TBI. Communication between health professionals and school personnel needs to begin early on in the recovery process. School practitioners such as school psychologists and=or counselors are often unfamiliar with medical terms, and the neuropsychologist can assist in their understanding. This assistance is crucial, because these two professionals often translate the meetings for the teachers and the school administration. Transitioning the child to school may differ depending on the childs age, with more difcult transitions often present for middle and high school students compared with elementary. In both middle and high school, adolescents develop independence as well as the ability to self-monitor their behavior. These are the very areas that are often affected in head injury particularly with frontal lobe involvement. The IEP needs to be developed with input from the neuropsychologist to assist in these transitions. Placements can range from homebound to residential to partial day, and medical personnel can have great input. Challenges can occur for patients as they make transitions from elementary to middle to high school and then to college=vocational school. At each point, further evaluation of the patients skills is needed to determine appropriate intervention and support. In contrast to elementary school children, middle and high school adolescents may not respond to remediation, and the focus of the intervention may need to turn to teaching

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of compensatory skills that are based on the child=adolescents strengths. The neuropsychologist plays an important role in assisting with the determination of when to shift emphasis and should be consulting throughout these transitions. Transition to college has its own challenges, and parents and adolescents need to prepare for the change in expectations with attendance at college. Home-school partnerships are important to be forged at all levels to assist with these transitions. Areas of future research include continuing use of the Internet to provide support to families and individuals. In addition, controlled studies of empirically validated interventions need a great deal of expansion. Support of families as well as school personnel may prove crucial for assisting in the recovery from TBI. Many schools are utilizing neuropsychological services to educate teachers and school psychologists in TBI and to modify curriculum to meet the childs needs. Pediatric neuropsychologists can assist and expand their practices, through consultation with schools and partnering with schools for assessment and treatment of children with TBI. The ndings from intervention studies and those from studies on reentry of children=adolescents with TBI also indicate the need for training of pediatric neuropsychologists in family work and in school consultation. These are exciting avenues that a neuropsychologist may take to expand practice and research endeavors.

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