Research On Children With Brain Injury
An initial strategy modeled after the one used for the adult evidence report was applied to one MEDLINE database (1995-1998). The strategy failed to capture 43 articles we had previously identified as relevant. We located those articles in MEDLINE, noted their MeSH terms, added those terms to the strategy, applied it to the same file, and confirmed that the new strategy would capture the articles missed by the first strategy. We applied the new strategy to MEDLINE and HealthSTAR. We then wrote more general strategies for databases from ERIC, PsychINFO, CINAHL, Current Contents, and the Cochrane Library (see Appendix C) and acquired the articles captured by the searches.
As we began retrieving and reading articles, we referred to reference lists of those articles for additional studies, and discovered an unacceptable number of relevant studies still not captured by the strategies. Examples of problems encountered are:
1. Several publications in the Journal of Head Trauma Rehabilitation (JHTR) were not captured. We found that CINAHL contains some, but not all, of these articles.
2. A large body of literature is indexed as "chronic brain damage" that mainly contains studies on outcomes from perinatal anoxia, a condition we excluded from this review. However, a number of studies about "traumatic brain injury" are indexed in "chronic brain damage" and not in "traumatic brain injury." To acquire these studies with a search strategy would require accessing the full body of "chronic brain damage" literature and manually eliminating all but the ones about TBI that were miscategorized.
3. The revised search strategy failed to capture all relevant articles about language development.
We elected to gather all relevant articles identified from the search, and proceed to acquire as much as possible of the remaining important literature from reference lists of articles and book chapter bibliographies. We also asked colleagues to identify studies containing data that were relevant to one of the key questions. Table 2 shows, for each research question, the number of studies with data acquired using the electronic database search strategy, as well as the number added manually from reference lists, bibliographies, and peer advice. It also shows the percent of the total number of relevant studies that were acquired from manually searching reference lists, etc. As shown in Table 2, no studies were added to question 1, and only a few were added to questions 2, 3, and 5. However, 50 of 61 relevant articles were added to question 4 from the manual method. Only 11 were acquired using the electronic search strategy. This indicates a lack of systematic categorization within key databases of relevant literature on TBI recovery for children that pertain to this question.
- Does the application of early, intensive medical rehabilitation in the acute care hospital improve outcomes for children with traumatic brain injury?
We found no randomized controlled trials and no comparative studies that investigated the efficacy of early, intensive rehabilitation for children or adolescents. Inferences about this intervention for children have been drawn from studies with adult samples.
Of three observational studies we located that used child and adolescent samples and contained data about this question, one (Berger, Worgotter, Oppolzer, et al., 1997) specifically reported outcomes associated with early, intensive rehabilitation. In this prospective, uncontrolled study, 38 severely injured children and adolescents admitted to one inpatient rehabilitation center were evaluated during their stay in the acute care hospital and at 6 months postdischarge from inpatient rehabilitation. Patients received intense, multidisciplinary neurorehabilitation in the hospital and in the rehabilitation center. Two measures of function were employed: the Glasgow Outcome Scale (GOS) score and a vigilance score designed by the researchers for this study. On admission to the rehabilitation center, 74 percent of the children were minimally responsive as measured by the vigilance score. By the 12th week of treatment, only 21 percent were minimally responsive. Deducting 6 patients in whom rehabilitation was incomplete at time of discharge, rehabilitation discharge GOS was 3 vegetative, 13 severe, 7 moderate, and 8 good; 1 patient died. Of the patients located at 6-month followup, GOS was 1 vegetative, 13 severe, 9 moderate, and 7 good.
Of the remaining two studies, one retrospectively compared outcomes of children who suffered anoxic brain injury with those who suffered TBI (Vander Schaaf, Kriel, Krach, et al., 1997). Ninety-eight patients from one inpatient pediatric rehabilitation facility were introduced to rehabilitation at varying times after injury, some sooner than others. They were evaluated for functional mobility at discharge from the center and at 1 or 2 years postdischarge. It was found at followup that the children with more functional mobility had been admitted to rehabilitation sooner after injury than those with less functional mobility, suggesting that earlier rehabilitation may be a factor in improving functional mobility. However, children who had less severe injuries may have been discharged to rehabilitation earlier than more seriously injured children, confounding the effects of severity with those of the timing of treatment. To address this, authors removed children in a vegetative state or those who could only smile (and thus those with longer time from injury to rehabilitation due to severity) from the data set and performed a discriminant analysis. It showed a significant relationship between duration of unconsciousness and functional mobility but no significant relationship between length of time from injury to rehabilitation and functional mobility, either at discharge or followup. Therefore, the analysis did not support the suggestion that early rehabilitation improves outcomes.
The third study (Sobus, Alexander, and Harcke, 1993) demonstrated that some children with TBI suffer from undetected musculoskeletal trauma and heterotopic ossification, indirectly arguing for early physiatry intervention. Eighty-two children and adolescents (60 with TBI and 22 with spinal cord injury [SCI]) treated at one rehabilitation unit over 18 months were given bone scans within 4 months of the injury. If the bone scan showed previously unrecognized trauma, its clinical significance was determined by reviewing nursing, physical therapy (PT), and occupational therapy (OT) charts to track whether the child had been favoring the traumatized extremity or whether complaints of pain during therapy led to behavior problems. Fifty-four patients were found to have trauma sites undetected prior to the bone scan; 28 did not. Of the 54 patients with previously undetected trauma sites, 43 had TBI and 11 had SCI; (3 SCI and 16 TBI had skeletal trauma; 4 SCI and 19 TBI had soft tissue trauma; 4 SCI and 8 TBI had heterotopic ossification). Fifteen patients had impeded rehabilitation as a function of their undetected traumas; all 15 had TBI. The authors suggested that the difficulties in communication unique to TBI warrant special methods for detecting physical traumas with that population. A primary weakness of this study is that, of the original 82 patients given bone scans, no evaluation was performed of the 28 patients for whom the scans did not show previously undetected trauma sites. Their charts would need to be reviewed as with the 54 patients discussed above, and the results of the two groups would have to be compared in order to verify the value of the bone scan.
We sought information about the effect of early, intensive rehabilitation on four outcomes (see Appendix B) specified by our technical panel as relevant to child and adolescent TBI. We found no evidence to support or disprove the effectiveness of this intervention. The question has not been addressed with studies employing research designs capable of demonstrating efficacy. The one study that evaluated relevant functional outcomes did not include a comparison group. While the point of the article about undetected musculoskeletal trauma was to recommend early bone scans (and not necessarily early physiatry), it raises pertinent questions about the unique communication problems associated with TBI and the possible positive results of early attention to physical therapy issues.
2. For children diagnosed with traumatic brain injury, what is the proportion provided with special education that is designed to accommodate the needs of TBI?
This question has two parts: (1) How many children with TBI receive special education services, and (2) Are the programs and services they receive delivered by people who understand and can manage TBI in children?
We define "special education designed to accommodate the needs of TBI" as a school or program that has the benefit of being informed by professionals who are trained in and/or understand the needs specific to children with TBI. Special education is provided in a number of different ways. An individual education program (IEP) is one method for delivering special education. It is a contract between parents and the school for the student who has been found eligible for special services, tutoring, or accommodations. An IEP is a tool for parents and teachers that identifies skills, strategies, and behaviors the student needs to function in school. It encompasses traditional educational goals and should include planning to create opportunities for social integration, leisure activities, preparation for work, and independent living skills.
Children with TBI who can resume academic activities may receive an IEP or some other form of special education. They may be reintegrated into their pre-injury classroom, be placed in a separate class with other children with disabilities, receive private tutoring, or attend classes provided by the long-term care facility in which they live. Some schools have professionals who are trained in the care and recovery process of children with TBI and can contribute that knowledge to the planning and implementation of special education programs for those children.
Prior to passage of the Education for All Handicapped Children Act of 1975 (Public Law 94-142), a report to Congress indicated that more than 50 percent of handicapped children in the United States were not receiving special educational services or were excluded from public education altogether. Since that time, a limited number of studies have attempted to quantify the proportion of children with head injury receiving special education (U.S. Department of Education, 1996).
Please refer to Chapter 2 (Methods) for literature exclusion criteria specific to this question. A total of 24 studies were evaluated for this question; 9 were excluded because they contained no data. Of the remaining 15 studies that contained data, three predated 1975 (Heiskanen and Kaste, 1974; Kleinpeter, 1976; Klonoff and Paris, 1974), four were conducted outside of the United States (Kinsella, Prior, Sawyer, et al., 1995; Kinsella, Prior, Sawyer, et al., 1997; Klonoff, Low, and Clark, 1977; Rutter, Chadwick, Shaffer, et al., 1980), and four were retrospective studies that included only students with TBI who were referred to a behavioral or psychiatric clinic (Burke, Wesolowski, Buyer, et al., 1990; Donders, 1992; Donders, 1994; Max, Sharma, and Qurashi, 1997). Four studies provide limited information regarding referral to special education programs among students diagnosed with brain injury. We found no studies that documented numbers of special education programs that are delivered by personnel who are trained in caring for and educating students with TBI; therefore, we were only able to address the first part of this question.
The most salient study that evaluated referral to special education for children with TBI (DiScala, Osberg, and Savage, 1997) gathered data from the National Pediatric Trauma Registry, encompassing 76 pediatric trauma centers or children's hospitals in the United States, over a period of 8 years. Descriptive data on 24,021 children were analyzed. Recommendations for special education at discharge from the acute care hospital were evaluated for the subset of children age 5 or older who were not discharged to a medical environment (n = 3,303). Although 18.7 percent were diagnosed with cognitive limitations, special education was recommended for only 1.8 percent (60 children); 3.6 percent received a referral for a home tutor. The authors speculate that lack of guidelines in trauma centers linking them to the educational system may account for low referral rates to special education. Discharges during the summer, a season of frequent pediatric injuries, also may contribute to the low referral rate. Finally, this study tracked referral at time of discharge from acute care; referrals to special education may have been provided during followup examinations.
Based on hospital admissions, two retrospective studies estimated that between 12 percent (Greenspan and MacKenzie, 1994) and 38 percent (Chapman, Culhane, Levin, et al., 1992) of students with known brain injury received special education (excluding premorbid special education enrollment). However, no evaluation of the students with TBI who did not receive special education was provided. Thus, it is not possible to determine if these students needed special services or what proportion of them was functioning well without services. Therefore, we do not know whether these reported referral rates indicate adequate referral, under-referral, or over-referral. Also, using hospital admission records as the denominator in making this estimate probably results in an overestimate of the actual number of children with TBI who receive special services because it does not include children with TBI who were never admitted to a hospital. Finally, excluding children with premorbid special education enrollment may further distort the findings, since children with existing problems appear to be predisposed to sustaining a brain injury.
One cross-sectional State-wide study (Virginia Department of Education, 1991) illustrated that school records underestimate the number of enrolled students who have a brain injury. All public school division special education directors and the superintendent of the Virginia School for the Deaf and Blind at Hampton were surveyed to gather information about students with TBI in the State. Fifty-eight percent of school districts responded representing 60 percent of students in public education in Virginia. Of 133 students identified with a brain injury, 36 percent of students' personal identification files mentioned brain injury. Twenty percent had TBI noted in the School Entrance Physical and Immunization Certificate. Of those students eligible for special education, a brain injury was mentioned in 82 percent of student's "confidential section" of the student file and on 33 percent of students' IEPs. The report did not specify the method used by the special education directors to respond to the survey for identifying the 133 students with TBI.
Few data from peer reviewed, published studies are available to determine patterns of referral to special education for children diagnosed with TBI. The data that are available may underestimate the proportion of children referred. Moreover, no available study used an independent measure of the need for special education to determine whether referral rates were appropriate. Instead, the available data measured the ratio of:
the number of special education referrals
the total number of TBI diagnoses.
The important question is, if the child with TBI needs special services, did that child receive them? The answer to that question depends on being able to measure independently the need or potential benefit from special education and then determining what proportion of children who could benefit are actually referred. We did not locate these data in the published literature.
3. Do children with traumatic brain injury who are provided with special education that is designed to accommodate the needs of TBI have better outcomes than (a) those provided with special education that is not so designed and (b) those who do not receive special education?
Refer to the previous question for a definition of "special education that is designed to accommodate the needs of TBI." No randomized controlled trials were found that examined the effect of special education designed to accommodate the needs of children with TBI. The greatest proportion of studies about education for children with brain injury consists of program descriptions written by clinicians and educators with field experience in integrating children with disabilities into educational settings (e.g., Blosser and DePompei, 1989; Ylvisaker and Feeney, 1995). One study with a comparison group, one small case series, one survey, and five case studies provide data about this question.
In the comparative study (Light, Neumann, Lewis, et al., 1987), a treatment group of children with TBI who met eight inclusion criteria (n = 15) was composed of consecutive admissions to a children's inpatient rehabilitation center over approximately 21 months. Children in the comparison group (n = 6) met the inclusion criteria but could not participate in the treatment because of distance from the hospital, time of referral, conflict with cointerventions, or lack of parental consent. Three classes of measures were used: neuropsychological and intelligence, educational, and adaptive and behavioral. Children were evaluated before and after the intervention. The program, the Neuro-Cognitive Education Project (NEP), provides one-on-one tutoring for each child, with instruction at home and/or in the school setting, and includes a component to assist families in understanding the child's new disabilities. The curriculum and protocol were individually designed for each child to meet that child's needs based on his or her strengths and weaknesses. Duration of the intervention varied from 3 to 7 months and from 19 to 68 hours of tutoring.
For the neuropsychological and intelligence measures, the comparison group performed significantly better than the treatment group at pre-test. Both groups had improved scores at post-test, but no significant difference between groups was evident. For the educational measures that were available for analysis, no significant differences were apparent between groups at pre- or post-test. At pre-test, children in the comparison group performed significantly better than those in the intervention group on six of eight adaptive and behavioral measures; for four of those six measures, at post-test the comparison group performed significantly better than the treatment group. In general, children in both groups improved from pre- to post-test. The baseline differences between groups prior to intervention, as well as differences in level and duration of the intervention, render the results of this study inconclusive.
The case series (Brett and Laatsch, 1998) presents a model for introducing cognitive rehabilitation into the school setting. Teachers providing the intervention had received special training and were supervised by psychologists who specialized in cognitive rehabilitation. Ten students received the intervention twice a week for 20 weeks. Students showed significant improvement from pre- to post-treatment on one of nine laboratory-based neuropsychological tests.
In the survey study, parents of children with brain injury were asked what factors contributed to successful return to school for their children (Parkin, Maas, and Rodger, 1996). Fifty-three of 80 surveys sent were returned. Of 26 variables that might be associated with outcome within five domains, parents thought four were associated with successful return to school. Two of these were attributes of the school program -- presence of a reintegration aide and school attitude toward integration. The other two predictors were home medical aide and pre-trauma medical and behavioral condition. This result suggests that parents perceive attributes of the school program important to children's successful return to school.
Five case studies using patients as their own controls provided data about this question. In these studies, researchers measured target behaviors or abilities before introducing the intervention (baseline phase) and took the same measures during the intervention (treatment phase). An increase in target abilities during treatment suggests an effect of treatment for the individual being examined. In some cases, the intervention was removed and an additional measure was taken (return-to-baseline) to observe if a decrease in the target ability would occur in the absence of the intervention.
In one study (Glang, Todis, Cooley, et al., 1997), a program was introduced into the school environment to enhance social networks for three students with brain injury, producing an increase in number of social contacts and parent satisfaction during the treatment phase. A second study (Suzman, Morris, Morris, et al., 1997) provided cognitive and behavioral training to enhance problem-solving skills for five children with brain injury in a program delivered in a special educational setting. All students had a decrease in errors on computerized tasks during the treatment phase. In a third study (Franzen, Roberts, Schmits, et al., 1996), two children given a cognitive intervention performed significantly better on verbal memory tests during the treatment phase than during baseline and approached performance level of one uninjured comparison subject. In a fourth study (Feeney and Ylvisaker, 1995), student involvement in planning daily routines, photograph cues, and verbal rehearsal were incorporated into the established programs of three adolescents in a TBI school reentry project who were presenting severe behavioral problems. During treatment, frequency of challenging behaviors and aberrant behaviors decreased for all three students, and the amount of completed work increased. The reverse was observed during the return-to-baseline phase. In the fifth study (Glang, Singer, Cooley, et al., 1992), individualized direct instruction produced increased academic performance for three students in targeted instructional areas of reading, language, math, and keyboarding.
One comparative study, one case series, one survey, and five case studies provide limited data about the effect of special educational programs for children with TBI, with varied results. For the study that attempted to compare outcomes for two groups of children with TBI -- one that received an intervention -- the pre-treatment performance between the groups was too different to be able to draw conclusions from the results. In the case series, a treatment effect was observed on only one of nine measures. In the five case studies, all patients showed improvement on measures taken during intervention as opposed to pre-treatment measures. However, the observed effect cannot be generalized to a larger population of children. The lack of reliable data on the effectiveness of special education makes it difficult to develop or verify criteria for entry into such programs.
4. For children who have sustained traumatic brain injury, does the early identification of (a) the child's developmental stage at the time of injury; (b) the child's developmental stage at the time of assessment; and (c) the extent to which the injury has arrested the child's normal developmental process increase the ability to predict when the child will present the needs, behaviors, and problems resulting from brain injury?
Large, longitudinal cohort studies would provide the best information about the various aspects of development that influence the long-term outcomes of children and adolescents with TBI. Important features of such a study are a clearly defined cohort and completion of the study by most of the participants. Ideally, the six aspects of developmental outcome presented in Table 1 would be evaluated in such a study.
Unfortunately, any given study of developmental outcomes in pediatric TBI is usually limited to one or a few of the listed aspects of outcome. For example, we found a large number of longitudinal studies for some topics (for example, intellectual/cognitive, or language) but not for others. Sixty-one articles reporting data related to developmental issues in pediatric TBI were found; 51 were prospective, 4 were population-based, and 13 were multicenter, and 12 studies evaluated patients for 3 or more years.
Because of the diversity of topics in this question and the large number of citations found in our search, we developed a system for rating the overall quality of each article on an ordinal scale and then selected the articles with the highest ratings for review in this section. The system is presented in Table 3, which gives basic information about each article. Column 3 lists the categories of development from the matrix in Table 1 addressed by each article. Columns 4 through 16 rate the utility of research for addressing developmental issues. For example, an article is considered better for finer discriminations in the chronological ages of participants (columns 9 and 13) or for following cases over a number of years with repeated measures (column 4). Providing critical information, such as age at injury (column 13), age at measurement (column 8), and the interval between injury and measurement (column 14), also raises the rating of a study. See Appendix F for a complete description of the ratings in each column of the table. The sum scores (column 17) are ranks, with a higher number signifying a better study.
We developed this system for rating articles to provide a method for selecting which articles were most likely to include reliable information about the long-term developmental outcome of TBI. It is not validated, and therefore its use is based on the unproven assumption that high ratings are correlated with other measures of quality. Validating such a system could be a useful part of a comprehensive systematic review designed to evaluate the large and diverse developmental literature.
To demonstrate how the system might be used, we selected seven articles that had the highest methodological scores for detailed review. These seven studies address four key issues in development and TBI. One evaluates the effect of focal brain damage on language development; two track the correspondence of brain growth with cognitive development; two demonstrate the presence of subtle, undetected deficits; and two use the growth trajectory method of analysis to evaluate development of a variety of cognitive and motor skills.
Effect of Focal Brain Damage on Language Development
The first study, which most closely addresses this research question, is a cross-sectional/longitudinal evaluation of language acquisition of 27 children suffering focal brain injury (Thal, Marchman, Stiles, et al., 1991). The patients had injuries in the prenatal period or within the first 6 months of life, were recruited from three research sites, and were remarkably similar in age at injury, nature of injury, and age at observation. Ten children (6 boys, 4 girls) were followed longitudinally, and another 17 (8 boys, 9 girls) provided cross-sectional observations at the three phases of language development being studied. Observations were made from the age of 12 months until 35 months, taking the children through the three main developmental phases of early language acquisition:
Phase one: 12-16 months (onset of expressive language, especially naming).
Phase two: 17-24 months (rapid increase in vocabulary and appearance of verbs and adjectives).
Phase three: 24-35 months (period of grammar acquisition).
All results were compared with well-established norms for uninjured children. The data collected are based on occurrence of words. The results demonstrate a predictable pattern of delays and deficits in language acquisition for children up to the age of 3 as compared with uninjured children, including the following:
Clear evidence for delays in lexical comprehension and production in all cases.
More dissociation of comprehension and production in language in all cases.
Unusual difficulty mastering predication in many cases.
Tendency to use many closed-class words, suggesting reliance on holistic/formulaic speech in many cases.
No differential effect of size of lesion on language development.
Association between right-hemisphere (RH) lesions and increased use of closed-class words, implying reliance on well-practiced but under-analyzed formulaic speech.
Slightly better comprehension of language with RH lesions compared with left-hemisphere (LH) lesions.
Association of left posterior (LP) lesions with greater and more protracted delays in expressive language.
No differential effect of LP lesions for lexical comprehension.
The main strengths of this study are its close control of sampling, timing of observations, and reliable measurement.
Correspondence of Brain Growth and Cognitive Development
Two studies (Hudspeth and Pribram, 1990; Thatcher, 1991) establish the base rate measures of brain growth at each stage of development that are necessary to detect the developmental effects of injury. These researchers used the electroencephalogram (EEG) to show that spurts of growth in the brain correspond to phases of cognitive development in children. Using techniques developed by Matousek and Peterson (1973), they were able to distinguish differential growth in four different regions of the brain (parieto-occipital=PO, temporo-temporal=TO, centro-central=CC, fronto-temporal=FT). They found that quite distinct spurts and plateaus occur in the growth of these regions, and that, together, the combination of growth in all four regions make a pattern that closely follows the chronological ages identified by Piaget and the neo-Piagetian students of cognitive development. The data are based on cross-sectional records of 561 normal children taken at 6-month intervals from the ages of 1 to 21 years. This work has the potential to illuminate the effects of focal brain lesions during childhood.
Two studies (Stiles and Thal, 1993; Stiles, Stern, Trauner, et al., 1996) revealed the presence of subtle, hidden deficits in cases of apparently normal performance in pediatric TBI with focal brain damage. In one study (Stiles and Thal, 1993), participants were 27 injured children from three sites and 10 control subjects who did not have TBI. All injuries occurred prenatally or in the first 6 months of life. This study demonstrated a significant delay in the acquisition of expressive language in the period of 1 to 2 years of age in children with left posterior injury, compared with uninjured children and those with left anterior lesions.
The same study demonstrated that the apparently normal performance in a drawing task by four 3- and 4-year-old children with right-hemisphere (RH) injury was actually the result of learned routines or "formulae" that the children had perhaps learned to use as a strategy to manage their deficits. These routines failed, however, when the children were given tasks requiring a nonstandard response (like being asked to draw an "impossible house"). Uninjured children of the same age and four similar children with left-hemisphere (LH) injury were able to perform the nonstandard task. They drew houses with the roof underneath and the chimney coming out the wall. But the RH children could only make one of two responses: they could draw another standard house, or they could use some other drawing formula (like a flower or an airplane) to make a house which was more bizarre than "impossible." This study is important not only for illuminating a concealed deficit in spatial and cognitive processes but also for understanding the social-emotional development of a child who resorts to bizarre responses when his or her capacity to respond fails.
The second paper (Stiles, Stern, Trauner, et al., 1996) also suggests that subtle deficits could underlie apparently normal performance in cases of focal brain injury in children. It relates two studies, one of children ages 4 and 5 years with focal brain injury (n = 16, 9 LH, 7 RH) before 7 months and the other of similar children ages 5 and 6 years (n = 11, 5 LH, 6 RH). Both groups were compared with uninjured controls on spatial grouping and construction tasks. In the younger group, the RH injured cases lagged behind controls on both simple and complex tasks. The LH cases performed as well as controls on both tasks but used different processes for the complex tasks than controls. In the older group, both lesion groups performed as well as controls, but both used different spatial processes from uninjured children, which were indicative of developmental delay.
Two studies used the analytic method of growth modeling and growth trajectories in their research. One (Thompson, Francis, Stuebing, et al., 1994) followed 49 children, ages 6 to 15, in a prospective study of motor, visual-spatial, and somatosensory skills. By analyzing individual growth curves, researchers were able to control for differences in the ages of the children, and they discovered systematic, non-linear changes in growth that were strongly related to injury variables. This is an important advance in method, allowing the management of variations within a sample of children undergoing different rates and kinds of development because of differences in age and precocity. By this method, the analysis was able to account for up to 93 percent of the growth parameter variance and take into account the individual differences in the children; it revealed nonlinear trends in development after injury.
The second study (Feldman, Holland, Kemp, et al., 1992) applied a method of growth modeling and the use of growth trajectories to a longitudinal evaluation of nine children with unilateral brain injury occurring before or just after birth. The children were followed for up to 4 years of age, and resulting data were compared with normative data for uninjured children on the growth of syntactic abilities and vocabulary size. The use of growth curves and individual growth trajectories allowed for great flexibility in the analysis of data, including problems of missing data and individual variability among the children. Although this was a small-scale study with only nine cases, researchers used a narrowly defined sample, followed them longitudinally with intense observations, and used innovative methods of growth curve analysis.
One longitudinal, multicenter study assessed residual neurological deficit in children with TBI 5 years after injury and suggested the predictability of deficits in acquisition of language within that time frame. Two large, single-center observational studies demonstrated the correspondence of early brain growth with cognitive development. Two small, single-center studies revealed subtle deficits in spatial and construction capabilities and in responding to nonstandard requests in children with TBI. Finally, two multicenter studies demonstrated the use of growth trajectory analysis in accounting for individual differences and changes over time when evaluating outcome from TBI.
We suspended the retrieval process for this question before reaching the limits of the body of literature. Of the relevant articles located, most were identified by manually searching reference lists and bibliographies and with the advice of peers, rather than through an electronic search. More manual searching might be necessary to net a complete set of references in each category of development covered by this question.
As stated, the ideal method for obtaining information about the influence of development on recovery from TBI in children would be large, longitudinal studies with clearly defined cohorts that address the six aspects of developmental outcome presented in Table 1. The studies we acquired for this question are mainly small; the samples were selected based on specific criteria, and therefore the results generalize only to like members of the population.
5. Does the provision of support to families of children with brain injury enhance the family's ability to cope and reduce the burden of illness?
No randomized controlled trials were located that compared the effect of support to families with no support. However, one trial using random assignment evaluated the differential effect of two forms of support to families. In addition, two prospective studies contained indirect evidence about the effect of provision of support.
In the study of the effect of two forms of support on family outcomes (Singer, Glang, Nixon, et al., 1994), 15 parents of 9 children and adolescents with severe brain injury (age range 21 months to 20 years) were randomly assigned to either an information and emotional support group (n = 8) or a stress management group (n = 7). The stress management intervention included instruction in coping skills and parent-to-parent self-help and social support. The information and emotional support group focused on parents' understanding of the problems of brain injury, with a component of social support. The primary difference between interventions was that one focused on the parents' needs and the other on the parents' understanding of the children's needs. Outcome measures were the Beck Depression Inventory (BDI) and the State Scale of the State-Trait Anxiety Inventory (STAI). Analysis of covariance was used to analyze the data, with pretest scores entered as covariates. The stress management group experienced significantly greater reductions in depressive symptoms and anxiety symptoms than the information group, as measured by the BDI and State Scale of the STAI. Results suggest that an intervention for parents of children with brain injury may do more to reduce the burden of illness if it focuses on the needs of the parents as opposed to those of the child.
One prospective, observational study evaluated changes in family functioning and predictors of family outcome 3 years following the traumatic brain injury of a child (Rivara, Jaffe, Polissar, et al., 1996). The families of 81 children (ages 6 to 15 years) with TBI were consecutively enrolled in the study from two tertiary care centers. Family interview ratings and standard measures of family and child functioning were completed at 3 months, and 1 and 3 years. Significant direct correlations were found between the presence of social support and eight of nine measures of family functioning at 3 years postinjury.
The main finding of a second prospective study that evaluated the impact of childhood TBI on work and family finances (Osberg, Brooke, Baryza, et al., 1997) was the association between severity of injury and high risk for work and financial problems. Eighty-two children who were treated at one of two trauma centers for TBI were evaluated while in the hospital and at 1 and 6 months postdischarge. Families were surveyed at 1 and 6 months about work and finances. The relevant finding was that families insured by a health maintenance organization (HMO) reported significantly fewer financial problems associated with their children's TBI compared with families who had other forms of insurance. Subsequent analysis confirmed no significant difference between coverage groups in the child's age, injury severity, number of impairments, acute hospital length of stay, discharge location, and most importantly, socioeconomic status. The authors suggested that the presence of the case management component of the HMO system served to help the family negotiate the care system and buffer them from complex paperwork.
Wade and colleagues (1995) reviewed five mpirical investigations published between 1975 and 1995 of the effects of pediatric TBI on the family. Studies cited in the review typify the literature about family function and TBI; they evaluated family/parenting stress, family burden, family functioning, or parent or sibling psychological adjustment following TBI. In general the five studies suggest an association between severe traumatic injuries and difficulties in family functioning as well as the functioning of individual family members. However, many families do not experience a deterioration in functioning. Factors such as poor preinjury family functioning (Rivara, Fay, Jaffe, et al., 1992) and the emergence of parental psychological disorder during the acute phase of the injury (Hu, Wesson, Kenney, et al., 1993) were associated with an increased risk of long-term disruption and dysfunction. Thus, the review provided information about predictors of family function, but it did not specify whether external aid improves family functioning.
Two studies introduce a characteristic of family preference that may effect utilization of available support. Waaland, Burns, and Cockrell (1993) evaluated and compared the needs of high- and low-income families following pediatric brain injury. The caregivers of 49 children ages 3 to 16 were recruited from the emergency room, intensive care, and rehabilitation units of hospitals in a metropolitan area. Caregivers' most important needs included clear information, input into therapy, and understanding from professionals and teachers. Personal needs, family support, and future patient-related concerns were devalued by both high- and low-income groups. The shared priorities and devaluation of personal needs common to these diverse socioeconomic groups may diverge as their children re-integrate into communities with varying levels of resources. Overall, information was the form of external aid considered most important by families during the initial phase following TBI.
A second prospective study (Wade, Taylor, Drotar, et al., 1996) found that families of children with severe TBI (n = 44) are significantly more likely to express the need for help than families of children with moderate TBI (n = 52) or families of children with orthopedic injuries (n = 69). These families expressed a need for concrete services such as child care, housekeeping, and financial assistance. However, only 15 percent of families whose child had sustained severe TBI, 6 percent of those whose child had sustained moderate TBI, and 6 percent of those whose child had sustained an orthopedic injury expressed a need for counseling or emotional support. Evaluation in this study occurred 1 month following injury; changes in family priorities may occur as they encounter the lifelong tasks of caring for a child with chronic disabilities. A longitudinal study could more adequately examine family priorities for kinds of support. These two studies suggest that research about family support should incorporate what families want and will use and how to encourage utilization of services with demonstrated utility.
The question of the effect of support on families of children with TBI has not been subjected to experimental research protocols with samples large enough to make strong, general statements. One small study compared two forms of support with each other, but no study compared the outcome of support to no intervention. There is no direct evidence about this question, but two prospective studies indicate a direct correlation between the presence of social support and better family function. A recent investigation about support to families of adults with TBI demonstrated that such questions can be evaluated using a randomized controlled trial study design (Wade, King, Wenden, et al., 1998). The study also showed a significant positive effect of the support intervention, encouraging further study of such interventions with child and adolescent populations.
We did not address the reciprocal effect of family functioning on outcomes for the child with TBI in this question. A number of studies have demonstrated a relationship between higher family function and better outcomes for the injured child (Taylor, Drotar, Wade, et al., 1994) and argue for provision of support to families as an intervention for the child.