# data[].attributes.body
sudden injury that causes damage to the brain.

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It may happen when there is a blow, bump, or jolt to the head.

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Falls.

Vehicle-related collisions.

Violence.

Sports injuries.

Explosive blasts and other combat injuries.

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Physical, sensory, behaviour, mental, and cognitive

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Overview of Traumatic Brain Injury (TBI)

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Traumatic brain injury: pathology review

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The IDEA's Special Education Categories: Traumatic Brain Injury

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Abstract

Traumatic brain injury (TBI) is increasingly viewed as a chronic condition, bringing long-term needs for patient and caregiver knowledge pertaining to symptom and problem management over time. In light of these needs, we performed a scoping review of the literature on brain injury education provided to adult patients and/ or family members affected by TBI. Objectives were to describe the types of educational interventions that have been developed; to review the effects of these interventions; and to determine gaps that might be filled by future research efforts. Of 88 articles meeting search criteria and subjected to data extraction, 34 concerned education about mild TBI and 54, moderate to severe TBI. Most mild TBI articles focused on education in the Emergency Room, while most moderate/ severe TBI education was directed toward family members/ caregivers and was frequently combined with other treatment components, making the effects of education difficult to discern. Only 1 article incorporated elements of self-management training (SMT), a model proved effective in other chronic health conditions. We recommend further exploration of SMT principles in long-term TBI care, as well as more precise definition of treatment components in all patient and family interventions, so that the specific effects of education and other treatment elements may be more readily evaluated.

Keywords: Brain injuries, patient education, family education, self-management

Introduction

Traumatic brain injury (TBI) is a major health problem affecting thousands of people annually in the US, with adverse effects on physical, cognitive, behavioural and emotional function. Moderate to severe TBI is accompanied by reduced participation in many spheres of life, including low rates of work or other productive activity and reduced social and recreational outlets ( 1). Mental health difficulties such as depression, anxiety, and anger/ irritability are common and persistent, and there is significant deleterious impact on overall quality of life ( 2). Family stress and burden are also common as the family system adapts to changed roles, ongoing care and supervision needs, and financial strain ( 3). Even so-called minor or uncomplicated mild TBI (mTBI), although followed by full recovery in the majority of cases, may result in persistent cognitive, physical, and emotional sequelae ( 4). The consequences of mTBI have attracted increased attention due to the debilitating problems experienced by many service members and Veterans, which are often comingled with symptoms of post-traumatic stress and chronic pain ( 5).

In the case of moderate/ severe TBI, it was once thought that the injury was a 'one-and-done' event, followed by recovery that would reach a permanent plateau within a year or two. Longitudinal studies have shown, however, that TBI may set off a dynamic process characterised by fluctuations in functional status over the lifespan ( 6). Thus instead of a static disability, TBI may best be treated as a chronic condition, with ongoing management and support provided to prevent deterioration and maximise recovery. However, the ideal components of long-term management for TBI have yet to be identified.

In other chronic health conditions such as diabetes, asthma, and heart disease, much research has focused on designing and testing the optimal ways of helping affected persons to understand and manage the consequences of the condition. Patient education is a key component of chronic disease management, with decades of research examining the effects of different kinds of information and guidance on symptom management. As one example, an instructional model known as neuroscience education (NE) has gained increasing use in the management of chronic pain. Rather than focusing on the anatomical or biomechanical aspects of pain, which can exacerbate anxiety, NE teaches patients about the way pain is processed within the nervous system, emphasises that physical activity can be helpful rather than harmful, and shows patients how to influence their own experiences of pain. A systematic review found compelling evidence that this kind of information, even when administered in brief sessions, reduces the perception of both acute and chronic pain and limits pain catastrophizing ( 7). Another highly influential model that includes patient education at its core is Self-Management Training (SMT), developed by Lorig and colleagues and used extensively for chronic disease management ( 8). SMT goes beyond the provision of information to include peer-led training in problem-solving and goal-setting related to chronic symptom management, as well as how to best make use of one's healthcare resources.

If we reconceptualise TBI as a chronic health condition, it is timely to ask whether and how patient education, perhaps including components of SMT, could help people with TBI to manage the long-term consequences of the disability. There appears to be great consumer demand: studies assessing the perceived needs of people with TBI and their caregivers have consistently identified as paramount the need for accurate, understandable information about the injury and its potential consequences ( 3, 9, 10). Family caregivers, in particular, have expressed concern that 'they did not know what they did not know' to help the injured person maximise recovery ( 3, 11). It has also been noted that most studies of information about TBI have focused on the acute phase of recovery, and that empirical studies of the effects of different models of patient/ family education are almost nonexistent ( 12).

Considering the importance of this topic, in view of the expressed needs of people with TBI and their caregivers and the growing recognition of TBI as a chronic health condition, we conducted a scoping review to examine the literature on TBI education provided to patients and family caregivers. Unlike a systematic review, in which the quality of the research is considered with the goal of evidence synthesis, a scoping review surveys the overall scope of published work on a particular topic toward the goal of identifying key concepts and gaps in the extant literature ( 13). In this review we sought to address the following questions:

1. What does the published literature reveal about the kind of education provided to patients and family members/ caregivers about the consequences of TBI?

1. Have different, distinct models of education been developed for this population?

2. What effects, if any, have been reported for different types of educational interventions?

3. Is there a sufficient number of empirical studies to warrant a systematic review or meta-analysis?

2. What are the gaps in the literature relative to the above questions, and how might they inform priorities for future research in this area?

Method

We conducted systematic searches for peer-reviewed articles published in English about the education and training of persons with TBI and their caregivers. Searches included studies using all designs, including meta-analyses and literature reviews. The databases searched were PubMed, CINAHL, PsycINFO, Cochrane Library, ABIEBR, Campbell Library, PROSPERO, and PsycBITE. Searches were performed using the appropriate subject heading terms and key words for TBI, head injury, concussion, and education, training, and instruction. Complete search strategies for each database, including all search terms used, are provided in . The searches were completed on October 27, 2016 and yielded 3,209 unique titles.

Appendix 1:

PubMed

(Traumatic brain injur* OR brain injur* OR TBI OR Brain Injuries[mh] OR head injur* OR concussi* OR Brain Concussion[mh] OR Postconcussi* OR Post-concussi* OR Post-Concussion Syndrome[mh]) AND (Educat*[ti] OR "Caregivers/education"[mh] OR "Patients/education"[mh] OR "Family/education"[mh] OR Patient Education as Topic[mh] OR Health Education[mh] OR Consumer Health Information[mh] OR teach*[ti] OR train*[ti] OR instruct*[ti] OR information[ti] OR program*[ti] OR programme*[ti] OR psychoeducation* OR psycho-education* OR "Psychotherapy/education"[mh] OR "self management" OR Self Care[mh])
Filters activated: English

(MH "Brain Injuries+" OR MH "Brain Concussion+" OR MH "Postconcussion Syndrome" OR "brain injury" OR "brain injuries" OR "brain injured" OR TBI OR "head injury" OR "head injuries" OR concussi* OR Postconcussi* OR Post-concussi*)
AND
(TI Educat* OR MH "Caregivers/ED" OR MH "Patient Education+" OR MH "Family+/ED" OR MH "Health Education+" OR MH "Consumer Health Information" OR TI teach* OR TI train* OR TI instruct* OR TI information OR TI program* OR TI programme* OR psychoeducation* OR psycho-education* OR MH "Psychoeducation" OR "self management" OR MH "Self Care+")
English language

(DE "Traumatic Brain Injury" OR DE "Brain Concussion" OR "brain injury" OR "brain injuries" OR "brain injured" OR TI TBI OR "head injury" OR "head injuries" OR concussi* OR Postconcussi* OR Post-concussi*)
AND
(TI Educat* OR DE "Client Education" OR "patient education" OR "family education" OR "caregiver education" OR DE "Health Education" OR DE "Drug Education" OR DE "Sex Education" OR TI "teach" OR TI "teaching" OR TI "training" OR TI "instruction" OR TI "instructions" OR TI "program" OR TI "programs" OR TI "programmes" OR TI "programme" OR psychoeducation* OR psycho-education* OR DE "Psychoeducation" OR "self management")
English language

Cochrane Library (Wiley)

Line # Search terms
#1 MeSH descriptor: [Brain Injuries] explode all trees
#2 MeSH descriptor: [Brain Concussion] explode all trees
#3 MeSH descriptor: [Post-Concussion Syndrome] explode all trees
#4 (Traumatic brain injur* or brain injur* or TBI or head injur* or concussi* or Postconcussi* or Post-concussi*):ti,ab,kw
#5 MeSH descriptor: [Caregivers] explode all trees and with qualifier(s): [Education - ED]
#6 MeSH descriptor: [Patient Education as Topic] explode all trees
#7 MeSH descriptor: [Health Education] explode all trees
#8 MeSH descriptor: [Consumer Health Information] explode all trees
#9 MeSH descriptor: [Psychotherapy] explode all trees and with qualifier(s): [Education - ED]
#10 MeSH descriptor: [Self Care] explode all trees
#11 (Educat* or teach* or train* or instruct* or information or program* or programme*):ti
#12 (psychoeducation* or psycho-education* or "self management"):ti,ab,kw
#13 (#1 or #2 or #3 or #4)
#14 (#5 or #6 or #7 or #8 or #9 or #10 or #11 or #12)
#15 #13 and #14

ABIEBR

This is not a database. It is an online "book" or literature review. We browsed it to locate the sections relevant to Traumatic brain injury and education.

Searched each of these terms in Title field and then visually skimmed results to check for any relevance to the topic of educational interventions, training, or instruction:
brain injury
brain injuries
head injury
head injuries
concussion
consussions
Postconcussion
Post-concussion
Postconcussive
Post-concussive

Searched each of these terms in Review Title field and then visually skimmed results to check for any relevance to the topic of educational interventions, training, or instruction:
brain injury
brain injuries
head injury
head injuries
concussion

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Intervention: Education/Psychoeducation/Bibliotherapy

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Intervention: Family Support

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "patient education"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "caregiver education"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "family education"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "patient information"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "patient training"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "caregiver training"

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: Psychoeducation

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: Psychoeducational

Neurological Group: Traumatic brain injury (TBI)/Head injury AND Keywords: "self management"

We reviewed all abstracts to determine eligibility for inclusion according to three criteria: ( 1) published in English, ( 2) published in peer reviewed journals, and ( 3) involved education or information or training (including self-management training) given to patients or families about the consequences of TBI. Articles on other etiologies of acquired brain injury were included, as long as TBI was included as a topic or as part of a study sample. Because our main interest was in comprehensive brain injury education, we excluded articles that concerned the training of one specific or circumscribed skill such as wheelchair mobility, anger management, goal management, etc. However, we did include articles about programmes that systematically covered many individual topics in an educational format, e.g. the specific physical, cognitive, and behavioural consequences of TBI, as coverage of multiple topics was felt to constitute comprehensive education. We excluded non-peer-reviewed pieces such as editorials and letters to the Editor, as well as articles intended for audiences such as coaches, educators, or the general public. We also excluded articles that made only brief mention of education (e.g. a programme description that noted merely that 'education was included') with no further details.

We reviewed the full text of all articles that met these criteria. Articles that did not have an abstract or did not provide sufficient information to determine eligibility were automatically included for full-text review. All abstracts and full text articles were reviewed by at least two independent reviewers. Disagreements were resolved by discussion and, if necessary, by asking a third reviewer to break the tie. Data from eligible studies were extracted on variables related to: a) characteristics of the sample or intended audience of the education (e.g. severity and chronicity of TBI; age; intended for patient, family, or both); b) type of report (e.g. descriptive, experimental); c) the content, method of delivery, and duration of the TBI education; and d) results or author conclusions with regard to the education.

provides detail on the abstract and full text review process. As shown in the Figure, 117 articles were determined to be eligible for data analysis. Twenty-nine of these papers concerned pediatric TBI/ ABI and were quite different in focus than the papers on education for adults. We therefore elected to use the 88 papers focused on adult patient/ family education for the current manuscript.

Results

When data had been extracted from all included articles, the study team examined the distributions of key variables to determine how the findings should be organised. We elected to group findings by severity of injury (mild versus moderate/ severe) on the grounds that educational interventions targeting these cohorts would be quite different, as well as likely to be delivered in different service settings. Severity of injury was generally inferred in one of two ways. Some articles were readily classified by the title alone (e.g., "Information provision after mild traumatic brain injury") or the contents of the title plus abstract. Others, particularly manuscripts reporting the results of studies, were classified on the basis of information provided on the study samples. In these cases, we used data on commonly used indices of TBI severity (admission Glasgow Coma Scale scores, duration of loss of consciousness, duration of post-traumatic amnesia, and/ or neuroimaging findings) to classify articles as concerning either mild or moderate/ severe TBI. If articles included both participants with mTBI and moderate/ severe TBI, we included them in the moderate/ severe group unless participants with mTBI predominated in the sample and the content of the article was consistent with mTBI. One experimental article ( 14) did not identify the severity of the sample but appeared to be more germane to mild injury and was included in that group. Thirty-four articles concerned mTBI, and 54 focused on moderate/ severe injury.

presents an overview of the studies included in this review. As shown in the Table, there has been an increase in manuscripts concerning TBI education over time, particularly in the case of mTBI since 2010. The Table also reveals that educational efforts for mTBI have tended to target the injured individuals and to be focused on traumatic injury, while moderate and severe TBI education is more likely to target or include families and caregivers, and to include both traumatic and non-traumatic injury. Regarding timing of education, mTBI papers are more likely than those concerning moderate/ severe injury to include information intended for those in emergency care. The majority of manuscripts in both groups have discussed in-person education, as opposed to phone or web delivery. Group interventions that include education are proportionally more common for moderate/ severe than for mild injury.

Table 1.

Mild TBI

Mild TBI education provided in emergency care.

Descriptions of mTBI education beyond emergency care.

Eight papers were classified as descriptive reports concerning mTBI education outside of emergency care. One small qualitative investigation focused on the perceptions of benefit related to a treatment programme for persistent post-concussive symptoms that included not only education but stress management training and compensatory strategy development ( 24). A survey of primarily American neuropsychologists in 1994 revealed that education was the intervention most often used (endorsed by 82% of respondents) for patients with 'post-concussive syndrome' (i.e. symptomatic mTBI). Moreover, those who used educational approaches also rated treatment for mTBI as more successful overall ( 25).

Effects of mTBI education on patient/ family outcomes.

Eight randomised controlled trials (RCTs) examined the effects of education on various outcomes of mTBI. Two used a group educational series as a control for a reasoning skills intervention, with results that were non-contributory for our purposes ( 14, 32). Similarly, another study used education in the form of an information manual to control for nonspecific effects of various forms of cognitive and psychotherapeutic rehabilitation, in a military sample with chronic post-concussive symptoms (33.) As hypothesised, the education condition had no significant impact on change in cognitive or functional status. However, an earlier RCT with 3- and 12-month follow-up in a civilian sample ( 34, 35) showed that a brief educational intervention was equally effective for ameliorating post-concussive symptoms, compared to a more intensive treatment programme that included neuropsychological evaluation with feedback, a Physical Therapy consultation, and treatment sessions as needed. A slightly more intensive early intervention, 4-5 telephone contacts to provide education and counseling over the first 3 months after mTBI, also resulted in fewer symptoms and less impact of symptoms at 6 months post injury ( 36). These contrasting findings are likely due to differences in selection criteria: the civilian samples were drawn from consecutive admissions to emergency wards, many of whom would be expected to recover over the period of time that the education was administered. In contrast, the military sample consisted of persons with chronic symptoms for which they actively sought treatment; this sample likely also had a higher rate of comorbidities such as post-traumatic stress. Another intervention for Veterans with remote mTBI (mean 10 years post injury) and chronic problems led to improvement in community integration ( 37) and diminution in caregiver burden ( 38) when compared to usual care. This intervention included home visits as well as telephone contacts over a 4-month period, and used a variety of treatment approaches, such as goal setting and action planning, in addition to education.

Two RCTs examined the effects of education delivered remotely to persons with mTBI. Belanger and colleagues ( 39) compared a brief (10-45 minute) web-based educational module to usual care in Veterans with chronic symptomatic mTBI. Although a previous pilot study had suggested benefit ( 40), little change was observed in the RCT. However, subgroup analyses showed greater benefit in those who were involved in mental health treatment, suggesting that education could serve as a useful adjuvant intervention. Moreover, participants who showed greater learning of the presented information also improved more on a measure of self-efficacy, i.e. perceived control over symptom management ( 39). The other remote intervention was an RCT using symptom assessment delivered 3 times daily for 14 days via SMS (text messages), starting on the day of injury. Half of the participants also received follow-up texts offering reassurance, education, and guidance contingent on their symptom reports. These educational messages appeared to be effective in preventing or reducing anxiety and irritability, although there was low power to detect group differences in this small pilot trial ( 41). Importantly, the SMS-delivered intervention was shown to be feasible and well tolerated in persons with acute mTBI.

A study using non-randomised cohorts suggested that a brief in-person intervention that included education, reassurance, and guidance on reducing alcohol intake resulted in less use of alcohol 3 months after mTBI compared to usual care ( 42). An uncontrolled, retrospective study reported beneficial effects of an 8-week programme involving in-home treatments from an Occupational Therapist and educational phone sessions with a psychologist for a group of patients who mostly had chronic mTBI ( 43). However, results are difficult to interpret due not only to the absence of controls but to the high proportion of participants receiving or seeking injury compensation (>50%). Two treatment models were described with pre- and post-test data suggesting improvement in emotional well-being, but without controls. One was a group treatment for Hispanic patients with chronic, predominantly mTBI that included education, relaxation training, and goal setting ( 44). The other was an adaptation of the Multi-Family Group Therapy model, a lengthy treatment (9-18 months) originally developed as a group co-treatment for patients and family members affected by serious mental illness. The adapted treatment, developed for a military sample with mTBI, included educational workshops and written materials on TBI and post-traumatic stress, as well as on the health benefits of positive thinking and active problem-solving. A stated purpose of the education is to help normalise the stress experienced throughout the family, particularly in the marital relationship ( 45). Results of an uncontrolled pre-post study suggested improvement in coping with anger, improved social support and productive activity, and decreased caregiver burden. Of note, cognitive impairment at baseline was predictive of less treatment response ( 46, 47).

Moderate/ severe TBI

Descriptions of moderate/ severe TBI education.

Three papers published since 2000 were, similarly, descriptions of specific programmes ( 57- 59). However, some of the more recent papers provide illustrations of interesting trends. Several papers published since 2000 have described the incorporation of user input or feedback to develop and/ or evaluate the quality of TBI education ( 60- 63). A case report described the use of telehealth, including streamed video, to provide remote education and other services to families with restricted access to specialized care ( 64). Two papers described the development of TBI education and support services to meet the needs of specific communities, one in the United Kingdom ( 65) and the other in South Africa ( 66).

Three additional papers were concerned with detailing the services provided to people affected by TBI, including education, although each followed a different approach. King et al. ( 67) described the interventions used in the treatment arm of a large stepped-care trial of education and advice given to patients with TBI during the 6 months postinjury. Not surprisingly, the need for advice and referral for services, in addition to education, was found to be greater for those with more severe TBI. These authors recommended that brief information leaflets, of the type used in their trial, should not be provided without the opportunity of contact with an interventionist to help explain the information and offer individual advice. Short and colleagues ( 68) described results of an online survey completed by Speech-Language Pathologists in Australia regarding information given to patients with TBI about their cognitive-communication deficits. These authors similarly found that severity of TBI was a common consideration, along with awareness of deficits, guiding the decision as to who should receive factual information (e.g. patient versus caregiver) and when. Finally, Simpson et al. ( 69) conducted an observational study to ascertain the types and relative proportions of Social Work services provided in an inpatient rehabilitation setting for severe TBI. Education/ information was the largest service category, accounting for 23% of direct care hours.

Multi-component interventions for moderate/ severe TBI.

In contrast to the papers on mTBI, the moderate/ severe TBI group included a large number of papers (n = 20) that described interventions containing education on brain injury among other components of intervention targeting families/ caregivers, patients, or both. These papers described the findings of experimental or, more often, quasi-experimental studies such as pre-post-test or non-randomised control group designs. They were very diverse with regard to inclusion of participants with TBI only vs. other types of acquired brain injury; mode of delivery (in person, telephone, web; individual vs. group); and the duration and intensity of treatment. The components of intervention added to education were also quite diverse but frequently included emotional support, counseling, or psychotherapy; coping skills training; goal-setting; provision of community resources; and individualised advice. One included sessions focused on topics related specifically to self-management, such as 'How I look after myself,' 'How I work with services,' and 'How I live in the community' ( 70). Befitting these broad interventions, there were typically a variety of outcome domains measured, e.g. emotional function, family function, coping, caregiver burden, and individualised goal attainment. In such reports, it was not possible to examine quantitatively the specific effects of education; however, some of the papers included either author inferences or participants' comments on the effectiveness of the information or education components. Thirteen papers did not include any comments on education ( 71- 83). The other 7 mentioned the value of education for filling knowledge gaps or correcting misinformation ( 84), for understanding the point of view of others dealing with brain injury, specifically relating to injured persons developing empathy for family members ( 85), and for increasing one's confidence in dealing with problems at home ( 86). Specific education topics that were reportedly most valuable for caregivers included cognitive and behavioural issues, such as memory impairments and impaired self-awareness ( 86, 87). Negative aspects of education included information presented in too technical a fashion to be accessible to family members or patients ( 84), and lack of use of presented information. For example, one web-based intervention found that family members preferred an on-line support group function to a variety of educational resources, which were seldom used ( 88). Authors of an RCT on family education and problem-solving reported that many participants did not read the written materials that were prepared to support each session ( 89).

Effects of moderate/ severe TBI education on patient/ family outcomes.

Six studies were explicitly designed to test the specific effects of education, including 3 RCTs. A study published in 1987 ( 90) compared standard caregiver instructions for discharge from an acute neurosurgical ward (which at the time explained mostly physical symptoms such as poor coordination or weakness) with instructions that included detailed explanations of cognitive/ behavioural symptoms such as lack of initiative, self-centredness, and decreased learning ability. Immediately after receiving their randomly assigned instructions, caregivers received vignettes depicting various problems at home and asking how they would handle each; caregivers receiving the more comprehensive education scored significantly higher on the quiz. A more elaborate educational programme, comprising 8 2.5-hour sessions, focused on written and oral didactic information presented separately to groups of people with chronic TBI and groups of caregivers. Compared to waitlisted controls, patient participants improved more on measures of emotional function and self-esteem, but caregivers showed no significant benefits ( 91). In the third RCT, Pegg and colleagues ( 92) compared two types of education delivered to patients with TBI on an inpatient rehabilitation unit. Those who received three 60-minute sessions of individualised education about their injuries, treatment plans, and progress in therapy were rated as putting forth more effort in Physical (but not Speech) Therapy and also achieved more gains on the Cognitive (but not Motor) FIM, compared to patients randomised to equivalent time spent in a more generic education. The authors speculated that the experimental treatment might have led to a greater sense of control and involvement in rehabilitation, even though it was noted that not all patients completely understood the information.

Two reports on the effects of education were quasi-experimental studies comparing early (2-9 months) versus later (≥ 1 year) recipients of caregiver education ( 93), and attendees versus non-attendees at a family educational series ( 94). Neither paper reported significant effects on emotional function or family functioning. An uncontrolled pretest-posttest study examined the perceived preparedness of family caregivers for discharge from inpatient rehabilitation, before and after being given access to a website with information and resources. Item analyses showed improved preparedness scores for most domains of caregiving. However, the sample included caregivers of people with mixed diagnoses, and it was noted that the 5 caregivers of patients with brain injury showed the lowest preparedness scores at post-test ( 95).

As was the case for the mTBI papers, our search turned up a number of RCTs on moderate/ severe TBI that employed an educational intervention as a control condition for a diverse set of presumed active treatments. Education alone had no significant positive effect on the outcomes targeted in most of these trials ( 96- 100). However, TBI education was reported as leading to more changes in emotional well-being, confidence, and understanding of TBI-related issues compared to Attention Process Training, which produced more changes in memory and attention, in a small within-subjects trial ( 101). In another study, 'instructional counseling' by a nurse, delivered as a control treatment via weekly telephone contacts, was said to produce results equivalent to in-hospital care for patients randomised to home or hospital within 3 months of TBI. The counseling, however, was individualised and included components other than education, such as problem-solving and suggestions for specific activities and exercises to promote recovery ( 102).

Discussion

The objective for this review was to assess the scope of the literature on education about TBI delivered to patients and/ or families. We sought an overall perspective on the kinds of education provided, whether distinctive models had been developed and compared, and what effects of education had been reported. One purpose was to determine whether there were sufficient empirical reports to warrant a more detailed or quantitative systematic review. Another was to identify gaps in the research on this topic and provide suggestions for further study.

We found a large variety of interventions that included education about TBI, frequently combined with other treatment elements such as coping skills, problem-solving, and resource facilitation, as well as peer support in group-based interventions. The examples of 'pure' education, i.e. delivery of information about TBI and its consequences, were found mostly in the literature on mTBI. Practice surveys and a few empirical reports focused on the information given to patients in emergency care or shortly thereafter, both to alert patients to issues that would need further medical attention and to help them interpret symptoms. It is logical from a clinical standpoint that interventions for moderate to severe TBI, and for persistent symptoms following mTBI, would incorporate treatment elements other than education; indeed, the number of studies using brain injury education alone as a control condition for an active treatment (n = 10) speak to the expectation that education by itself would be ineffective, at least for the outcomes targeted in those studies. From a research perspective, the descriptions of these multi-faceted programs do not allow for analysis of the effects of specific components of treatment, including the educational content. Regarding the question of distinct models that could be compared head-to-head or subjected to meta-analysis, it appeared that most studies developed educational content and other programme elements de novo. Even the examples of similarly named treatments (e.g. Multifamily Group Therapy ( 45- 47)) were quite different in content, intensity, duration, and sample composition. Considering the very wide variety of treatment approaches, we conclude that a more formal systematic review would be premature, and a meta-analytic approach would not be possible.

From a qualitative synthesis of the literature, we offer the following conclusions about brain injury education for patients and families:

1. Interest in mTBI education has risen in the last decade along with increased concern about the potentially serious consequences of repetitive injuries sustained in sports and in battle, and there appears to be consensus that education is a critical element in the treatment of mTBI ( 25). The rapid accumulation of knowledge about diagnosis and treatment of mTBI creates challenges for keeping education up-to-date ( 30, 31) and for helping patients separate fact from speculation.

2. Early education on the symptoms and typical recovery course of mTBI may be helpful for reducing symptoms or their impact on daily functioning ( 34- 36). However, in the minority of patients for whom symptoms persist, education may not be effective unless accompanied by other psychotherapeutic treatment components ( 33). In such cases, a more comprehensive biopsychosocial approach to treatment is warranted ( 30, 31).

3. The early literature on educational interventions for moderate/ severe TBI was predominated by descriptive reports of specific programmes that were geared mainly to family/ caregivers, rather than persons with TBI. More recently, injured persons have been included in group interventions, either for themselves or along with family members; additionally, there has been a trend toward the use of patient/ family input in developing and refining such programmes ( 60- 63). However, programmes for moderate/ severe TBI are more likely than those for mTBI to include mixed etiologies of brain injury. While this approach may be economical in the clinical setting, it runs the risk of diluting information that could otherwise be of specific help to those with traumatic injuries.

4. The existing literature provides few definitive findings as to the specific effects of education on recipients, other than the proximal outcome of increased knowledge ( 90). However, confidence in one's ability to handle problems (i.e. self-efficacy)( 39, 86, 101) and a greater degree of investment in one's rehabilitation ( 92) are two outcomes that have been noted in previous studies and should be explored further, as gains in these areas have the potential to 'snowball' into additional improvements in functioning and emotional well-being.

Additional recommendations for future research in this area include the following:

1. For mTBI, there may need to be further development and research devoted to finding the most clinically- and cost-effective ways of delivering early education, not only for flagging problems that should bring patients back to emergency care, but for helping to prevent symptom exacerbation. The scant evidence in the existing literature suggests that the distribution of leaflets should be bolstered by some type of oral instruction or repetition of content ( 21- 23, 67).

2. Remote delivery of interventions including education, via telephone, internet, or text messages, has begun to be tested and will undoubtedly increase. Further study in this area should take note of the somewhat mixed findings to date, which suggest that web-based education may be valuable as a supplement, rather than a replacement, for more traditional delivery methods ( 39, 40).

3. A problem in this area, which affects rehabilitation treatment research as a whole, is inadequate definition of interventions ( 103.) Further studies along the lines of Simpson and colleagues ( 69), which attempted to define and count specific forms of treatment, would ultimately help to enable the identification of the 'active ingredients' of TBI education and affiliated treatment models, and would promote replication. The recent use of manualized treatments ( 77, 85) is a positive trend in this regard.

4. We recommend the exploration of self-management training models for people affected by moderate/ severe TBI, who may need to address a variety of evolving problems for years postinjury. Full-blown SMT ( 8) has not been applied to this population, likely because cognitive limitations could impede some aspects of the model (e.g. peer leadership). However, our search revealed one attempt to teach SMT-related topics, such as ongoing self-care and wellness and how to communicate effectively with healthcare systems, to people with moderate/ severe chronic brain injury ( 70). We encourage more such efforts to help injured persons gain maximal control over the impact of their symptoms, even if help from others continues to be needed.

Conclusion

The provision of patient education plays a critical role in the management of chronic diseases such as diabetes and arthritis, yet the role of educational interventions in improving long-term health and quality of life after TBI have not been thoroughly investigated. This scoping review clearly indicates that educational materials and interventions provided to patients and/ or families after TBI vary considerably in content, mode, duration, and intensity of delivery. Nonetheless, there are hints in the literature that providing even basic information can improve patient and caregiver self-efficacy and motivation for rehabilitation and recovery, and that persons with significant cognitive impairment can participate in self-management training. Given the opportunity for progress in this area of study, we call on clinicians and researchers to identify or develop evidence-based educational content and to develop systematic approaches to delivery of educational interventions along the continuum of TBI care.

Acknowledgements

We thank Melissa Shuman-Paretsky, PhD and Erica Kaplan, PhD, for their assistance in data abstraction.

The contents of this manuscript were developed under grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant numbers 90DP0037, 90DPTB0004, 90DP0045, 90DPTB0013, 90DP0038, 90DPTB0009, 90DP0028, 90DPT0016, 90DP0012, and 90DP0082. Additional support was provided by the National Institute on Aging, grant number P30 AG024832. NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

Footnotes

Declaration of interest

The authors report no conflicts of interest.

Contributor Information

Tessa Hart, Moss Rehabilitation Research Institute, Elkins Park, PA.

Simon Driver, Baylor Scott and White Institute for Rehabilitation, Dallas, TX.

Angelle Sander, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine; TIRR Memorial Hermann, Houston, TX.

Monique Pappadis, Division of Rehabilitation Sciences, School of Health Professions, University of Texas Medical Branch at Galveston, TX; TIRR Memorial Hermann, Houston, TX.

Kristen Dams-O'Connor, Department of Rehabilitation Medicine, Department of Neurology Icahn School of Medicine at Mount Sinai, New York, NY.

Claire Bocage, American Institutes for Research, Washington, DC.

Emma Hinkens, American Institutes for Research, Washington, DC.

Marie N. Dahdah, Baylor Scott and White Institute for Rehabilitation, Dallas, TX.

Xinsheng Cai, American Institutes for Research, Washington, DC.

REFERENCES

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Traumatic Brain Injury Education for Adult Patients and Families: A Scoping Review

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Traumatic brain injury (TBI) is increasingly viewed as a chronic condition, bringing long-term needs for patient and caregiver knowledge pertaining to symptom and problem management over time. In light of these needs, we performed a scoping review of the literature on brain injury education provided to adult patients and/ or family members affected by TBI.

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The Traumatized Brain: A Family Guide to Understanding Mood, Memory, and Behavior after Brain Injury

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Listen to this episode from Focus on Neurology and Psychiatry on Spotify. Host: Maurice Pickard, MD A traumatic brain injury is a life-changing event, affecting an individual's lifestyle, ability to work, relationships―even personality.

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Welcome to the 2019 Brain Injury Conference - Brain Injury Rehabilitation: The Health & Wellness Connection sponsored by Kessler Institute Rehabilitation and Kessler Foundation.In this lecture podcast Nancy Chiaravalloti, PhD, Director of Neuropsychology, Neuroscience Research and Traumatic Brain In…

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https://www.researchgate.net/publication/230619754_Epidemiology_of_head_injury_in_the_United_Arab_Emirates

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Student and Teacher Resources for Success in School After a Head Injury

A traumatic brain injury (TBI) may create significant changes in a person's lifestyle and goals for the future, but a head injury does not have to be a barrier for a student's educational aspirations. The majority of students who suffer from a TBI return to the classroom, either in traditional school settings or through specialized programs. Students of all ages-from elementary to college-have resources available for continuing their academic journeys. Keep reading to learn about these resources, organizations and programs that can help students perform academically after a head injury. Parents and teachers will find a variety of tools they can use to support their students as well.

Traumatic Brain Injuries in Students

Traumatic brain injuries come with a lot of uncertainties, as no two injuries are identical. The location of the injury, the medical and rehabilitative care after the initial injury, the age of the individual and more can all affect how a traumatic brain injury heals and what effects linger. For some, including mild traumatic brain injuries-also known as concussions-the effects may be temporary. For others, the impact can be lifelong. Here are some common causes and effects of traumatic brain injuries in students:

POSSIBLE CAUSES OF A TRAUMATIC BRAIN INJURY

Types Of Traumatic Brain Injuries

Common Effects & Symptoms In Students

Academic Impact

After a Traumatic Brain Injury:
Transitioning Back to Class

No matter the age of the student, going back to school following a traumatic brain injury can present challenges. Though there is no one-size-fits-all list of solutions, there are many resources to help students with traumatic brain injuries successfully transition back into the classroom. From innovative study systems to navigating social situations, a TBI may force students to reassess their strengths, weaknesses and acclimate to aspects of their personality that might be different. Take a look at some common challenges students might face coming back to the classroom after a TBI with age-appropriate resources designed to help.

K-12 Students

Though the age spectrum is wide, K-12 students who are recovering from traumatic brain injuries typically have one thing in common: they are still supported by their parents. This section is not only designed to be helpful for K-12 students after a TBI themselves, but their parent and teacher allies as well.

CHALLENGE: Keeping Old Friends & Making New Ones
Social isolation is a common challenge for individuals with disabilities, including students with TBIs. Friends and peers are a vital part of school success, but students should be prepared for potential changes in the social dynamics between old friends, and also set themselves up to make new connections.

Resources to Help

CHALLENGE: Navigating Accommodations
While younger children will often have their Individualized Education Program (IEP) planned and created by their parents and teachers, older students may have a better idea of what they need and want to accomplish in school after a traumatic brain injury. IEPs for high schoolers may include post-graduation plans and goals. It's never a bad idea to know your rights and to be your own advocate.

Resources to Help

CHALLENGE: Finding New Study Habits
Traumatic brain injuries can greatly alter cognitive abilities. This means that students may have difficulties with skills vital for school work, such as language processing and organization. Below are helpful resources for students who want assistance, tips and new approaches to academics after a TBI.

Resources to Help

College Students

College students with disabilities, including TBI, are less likely to graduate on-time than their peers. While that may sound discouraging, these low graduation rates are likely the result of students not knowing about or finding the accommodations they need to access the same level of education as their peers. Continue reading to learn some of the specific challenges college students with TBI face and how they can overcome them.

CHALLENGE: Feeling Discouraged
College can be challenging both inside the classroom and beyond, especially for students with traumatic brain injuries. Just remember that there are other individuals who have been down similar paths; many others have learned to overcome brain injury challenges to find academic success. Below are some examples of individuals who have gone to college with TBI and graduated, as well as suggestions for making sure your social life grows alongside your academic one.

Resources to Help

CHALLENGE: Difficulty Studying & Learning
College learning is much more self-directed than in high school. This means that students must rely on their own time management, scheduling and decision-making with limited input from parents or teachers, which may pose a challenge for some students with TBI.

Resources to Help

CHALLENGE: Navigating Accommodations
The plans and services offered to eligible students with disabilities are very different from those used in the public K-12 school system. Students with a traumatic brain injury should familiarize themselves with the accommodation laws and systems colleges follow, and meet with their school's Disability Services Office to learn about your campus-specific accessibility and accommodation options.

Resources to Help

CHALLENGE: Changes in Personal Relationships
College students may find their personal relationships change after a TBI. It's important to remember that a brain injury, no matter how mild or severe, affects both the patient and those that surround and support them. Communication is key to keeping relationships with friends, family, co-workers and teachers healthy, but both sides should be patient and understand that progress may be slow.

Resources to Help

Student Veterans with Traumatic Brain Injuries

Many veterans use the post-9/11 GI Bill to attend college, including those with combat-related traumatic brain injuries. Transitioning into civilian life can be difficult, and a brain injury can make the transition into academic life more stressful. Fortunately, there are dozens of organizations, campus support systems and online resources that can help. Here are some of the common challenges student veterans might face upon returning to the classroom, with advice and for navigating the college accommodations system and successfully pursuing a degree as a student veteran with a traumatic brain injury.

CHALLENGE: Adjusting to Academic Life
Transitioning to civilian life after the military can be a challenge in of itself, and combat-related injuries such as TBI can make it even more complicated. Luckily, there are a wide range of tips and resources available specifically designed to make this transition smoother for student veterans.

Resources to Help

CHALLENGE: Navigating Academic Support Programs
While the U.S. government and Department of Veterans Affairs will provide support for veterans in general, there are also some lesser-known resources from both the government and civilian organizations specifically designed for veterans with TBIs.

Resources to Help

CHALLENGE: Finding Success in School
Traumatic brain injuries can drastically alter cognitive abilities that are necessary for veterans to have maximum success in school. That doesn't mean veterans can't find academic success after a head injury-there are organizations and services dedicated to helping veterans academically, including assisting in the process of re-learning how to learn.

Resources to Help

Expert Advice:
Common Academic Accommodations for TBI

Will Dane, Brain Injury Association of America

Will Dane is the public affairs manager for the Brain Injury Association of America, one of the foremost organizations dedicated to serving individuals with TBIs. Will has done extensive work in fundraising and advocacy and holds a degree from the University of Oklahoma in communications.

"Americans between the ages of 15 and 24 are among the highest risk of sustaining a brain injury. This is problematic as the injuries occur when individuals are just beginning to plan or venture into their independent lives, and for many the most important step in this process is obtaining an education. The challenges a student experiences after a traumatic brain injury vary significantly depending on the severity of the injury. In the most severe cases, the child may not be able to function independently in any capacity. A thorough evaluation of the student's academic and cognitive abilities is essential to determine what accommodations are necessary."

Here are some examples of common accommodations Dane suggests for students coming back to class after experiencing a TBI:

Schools & Educators:
Supporting Students After Brain Injuries

Although students with TBI will often have access to accommodations and special pull-out classes, mainstream education teachers may not have all the resources they need to successfully integrate these students into the general educational environment and assure that they learn and grow alongside their peers. A wide range of resources are available to teachers, including those working in special education classes and general education classes, for every age group from elementary to college.

Support In Elementary & Middle School
Young students with newly-acquired TBI may have the same difficulties as older students with TBI, but elementary and middle school classes are structured very differently and require a specialized approach to produce successful learning outcomes. Below are some examples, ideas and resources educators can use to support and accommodate elementary and middle school students with TBI.

Support In High School
High school is a difficult time for many students, and TBI can introduce new challenges for teens at school. Educators can find strategies for supporting and teaching students with TBI through their high school years and guide them to academic success with the help of the resources below:

Support In College
College students with traumatic brain injuries may work with their professors on the accommodations offered to them by a school, but professors and administrators can help support students with TBI in many other ways as well. Check out some of the more innovative methods and ideas being used on college campuses to help students with TBI succeed.

How Educators can Help Students Developing & Rebuilding Social Skills

Educators know school isn't just about teaching lessons provided by textbooks, it's also about helping students develop healthy socialization habits. Social learning happens inside and outside the classroom, and students with TBIs may need to learn or rebuild their social skills in different ways than their peers. To help improve the social skills of students with TBI and to help prevent feelings of loneliness and isolation, check out the resources below:

How Educators Can Help Student Veterans

Traditional college students often arrive on campus fresh out of high school, but a growing number of non-traditional students are enrolling in college after military service. While these students can still benefit from the accommodations offered by a campus disability or veteran's service office, those with a TBI may benefit from additional support from their school and educators:

How Parents & Guardians Can Help Academically After a Head Injury

The support of parents, guardians, and families as a whole are often vital for the success of students; this is especially true for children, teens and young adults who have experienced a traumatic brain injury. Here are some valuable resources for understanding and helping students with TBI adjust to school and perform to the best of their abilities while there:
Adolescents with Traumatic Brain Injury
This article, published by the American Psychological Association, is written mostly for therapists and other providers. However, it provides valuable insight into significant challenges students with TBI may face when transitioning back to school and how their support network, including their families, can help.
BIAColorado
The Colorado chapter of the Brain Injury Association put together this piece to help connect children, teens and parents with TBI-specific support groups. Although these groups are Colorado-specific, other state chapters of BIA may have similar directories and information.
Guide for Families About School
The Brain Injury Association of New Jersey created this guide with over 60 pages of advice, resources and tips for helping a student with TBI successfully return to school.

The BIA of New York created and maintains this free resource for teachers, parents, and students; it helps individuals with TBI test and identify new learning strategies and solutions that best suit their needs.
Parent Center Hub and TBI
This section of the Center for Parent Information and Resources focuses specifically on TBI, including a breakdown of common symptoms and challenges children can face and extensive advice on how to help students succeed in school.

Fat Brain Toys offers a selection of toys that can help boost the motor and cognitive skills of children with TBI. The toys are largely intended for pre-K through elementary ages.
Top Ten Back to School Tips for Students
This guide offers ideas for how parents can help their children re-adjust to school and succeed once they are there. Many of the ideas are easily implemented and involve no special purchases.
Why a C Feels More Like an A to My Daughter With TBI
This short article written by the mother of a college student with TBI addresses the idea of creating a "new normal" and realistic expectations with honesty and insight.

Head Injury Prevention: Schools Protecting Students

Head injury prevention has been a serious topic of discussion amongst schools, parents, politicians and healthcare professionals, as popular sports programs like as soccer and football have been shown to put students at increased risk for TBI. Because these programs are often school-sponsored, many believe administrators should be implementing policies aimed at head injury prevention to better protect their students. Here are some examples of how schools and communities are working to address, treat and prevent TBI in students:
Coaches Training Programs
Published by the Brain Injury Alliance of Nebraska, this coach and player toolkit provides links to approved head injury training programs for coaches, such as Heads UP to School Sports. Illinois Policy Tackle Football Ban

Illinois is just one state supporting a ban on tackle football for children under 12 years of age.
NJ Safe Schools
The New Jersey Safe Schools program addresses concussions and mild TBIs in schools by providing prevention information to schools, coaches, teachers and parents.
State-by-State Injury Prevention Policy Report (2015)
This extensive account of injury types and prevention measures across the states of America includes sections on which states have programs addressing TBI in schools and the overall success of these programs.
Symptom Tracking App for Concussions
In part developed by the Brain Injury Research Program at the Medical College of Wisconsin, this app helps parents and coaches successfully identify head injuries to assure students get the treatment they need.
TBI and SCI Injury Prevention Inventory
Here, SafeStates has a directory of organizations and systems designed to protect students from concussions and TBI, including sample measures communities and schools can put into place.
Think-A-Head
This program spearheaded by the Brain Injury Association of Massachusetts teaches K-12 students about the dangers of brain injury and how they can make healthy choices to prevent them. The program includes three separate sections for elementary, middle and high schools with age-appropriate activities and lessons.

Additional Head Injury Resources for Students

In addition to the specific resources above, there are dozens more TBI-focused websites and organizations available online, some geared towards those who suffer from TBI and some for their support networks. Here are some of the best TBI resources for everything from life skills support to finding advocacy services.
Brain Injury Association
The BIA is a nationwide organization that supports individuals with TBI; in addition to its directory of state chapters, the BIA includes dozens of useful articles about nearly every aspect of living with TBI.
Brain Injury Services
This Virginia-specific organization connects individuals with traumatic brain injuries to the services and support systems they need.

This website contains a variety of articles for anyone affected by TBI as well as information on how to cope with the symptoms of TBI to lead a more successful and fulfilling life.
Centre for Neuro Skills
There are four Neuro Skills centers throughout the country that offer rehabilitation services to those with TBI and similar acquired brain injuries; even if you do not live near a Neuro Skills center the website still has a variety of helpful tips and resources.
Lash & Associates Publishing
This publishing company offers a wide range of tools and resources for individuals with TBI, their families, and professionals who work with TBI.
Model Systems Knowledge Translation Center
This organization creates and offers excellent resources for individuals suffering from traumatic brain injuries, spinal cord injuries and burns.
National Resource Center for Traumatic Brain Injury
The TBINRC is managed by Virginia Commonwealth University and serves as a hub for resources, links and even Q & As about traumatic brain injuries.

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Students with Traumatic Brain Injuries | Accredited Schools Online

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A traumatic brain injury (TBI) may create significant changes in a person's lifestyle and goals for the future, but a head injury does not have to be a barrier for a student's educational aspirations.

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What is a traumatic brain injury (TBI)?

A traumatic brain injury, or TBI, can happen when there is a blow to the head. The injury can be penetrating, such as a gunshot wound, or a non-penetrating injury, such as being struck in the head in a car accident.

Traumatic brain injuries vary in severity. Many people recovery from TBIs within days and more severe forms can cause permanent brain injury or even death.

Who might get a traumatic brain injury (TBI)?

Anyone can experience a TBI, although nearly 80% of them happen to males. TBIs are also more common among people older than 65. People in this age group are more prone to losing their balance, falling and hitting their heads. But even infants can experience TBIs from incidents like falling from a bed or changing table, or more rarely, from abuse.

People involved in certain professions or activities have a higher risk of TBIs, including:

Athletes (both recreational and professional).

Construction workers.

Military members.

Police and law enforcement.

How common are traumatic brain injuries (TBIs)?

TBIs are a leading cause of disability and death in the United States. The most current numbers available from the Centers for Disease Control and Prevention (CDC) are from 2014. That year, TBIs contributed to close to 3 million emergency department visits, hospitalizations and deaths. More than 54,000 adults and 2,500 children died from TBIs that year.

What are the types of traumatic brain injuries (TBIs)?

The severity of the head injury is determined by several different factors, such as loss of consciousness, certain neurological symptoms that happened at the time of the injury, loss of memory for the injury and time surrounding it, and abnormalities on head CT or brain MRI.

There are several different types and grades of TBI:

Mild concussion (mTBI): Concussions are the most common type of TBI. Three out of 4 TBIs every year are concussions. These mTBIs can include brief alterations of consciousness such as feeling "dazed" or loss of consciousness for less than 30 minutes. People who have an mTBI can experience confusion for about one day, which is different from difficulties with attention or memory.

Moderate TBI: this type of head injury is associated with loss of consciousness for over 30 minutes but less than one day. Confusion can last for up to one week.

Severe TBI: individuals with this type of head injury lose consciousness for over one full day. These injuries are typically associated with changes on head CT or brain MRI.

Uncomplicated TBI: Head CT/brain MRI are normal, regardless of mild, moderate or severe grade.

Complicated TBI: Head CT or brain MRI show changes, such as bleeding.

Closed: Most TBIs are closed. A closed TBI means an outside force causes a blow or jolt to the head that did not penetrate the skull. This impact injures the brain, causing it to swell.

Open: Healthcare providers may call open TBI a penetrating TBI. This injury occurs when a bullet, knife or something else goes through the skull. If the object goes into the brain, it directly damages brain tissue.

Nontraumatic: Also known as a hypoxic/anoxic brain injury. Some TBIs aren't from trauma. They can result from strokes, seizures and events like choking and near-fatal drownings. These incidents can deprive the brain of oxygen (cerebral hypoxia).

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Traumatic Brain Injury (TBI): What Is It, Causes, Types

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Traumatic brain injuries damage brain tissue, affecting brain function. Concussions are a mild form of TBI. Falls are a leading cause of TBIs.

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https://www.nichd.nih.gov/health/topics/tbi/conditioninfo

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TBI is an injury to the brain from some type of trauma or force, such as a bump or blow to the head or an object such as a bullet entering the skull. TBI can cause problems with brain function. Some TBIs result in mild, temporary problems. A more severe TBI can lead to serious physical, mental, and emotional symptoms; coma; and even death. People or children who have already experienced brain injury or brain disease are at higher risk for developing TBI.

A text alternative is available at: http://www.nichd.nih.gov/news/resources/links/Pages/TBI_VTA.aspx.

TBI includes (but is not limited to) several types of injury to the brain:

Skull fracture occurs when the skull cracks. Pieces of broken bone from the skull may cut into the brain and injure it, or an object such as a bullet may pierce the skull and enter the brain.

Contusion is a bruise of the brain, where swollen brain tissue combines with blood released from broken blood vessels to increase pressure on the brain. A contusion can occur from the brain shaking back and forth against the skull, such as from a car crash or sports injury or in shaken baby syndrome.

Intracranial hematoma occurs when a major blood vessel in or around the brain is damaged and begins bleeding. The pooling of blood puts pressure on the brain.

Concussion is among the most common forms of TBI. A concussion can happen when the head or body is moved back and forth quickly, such as during a car crash or sports injury, or from a blow to the head. Concussions are often called "mild TBIs," because they are usually not life-threatening. However, they still can cause serious problems, especially if the person has experienced a concussion before.

People may also experience non-traumatic brain injuries that result from a problem, such as a stroke, infection, or broken blood vessel, inside the brain or skull. A person who has a non-traumatic brain injury may have some of the same symptoms as a person who has a TBI. Both traumatic and non-traumatic brain injuries can have serious, long-term effects on a person's ability to think and function.

TBI can happen to anyone, but some people are more likely to experience a TBI than others. For example, according to the Centers for Disease Control and Prevention (CDC), young children, teenagers, and adults age 65 or older are at higher risk for TBI. CDC statistics also show that males are at higher risk than females in most age groups.

Citations

1. Centers for Disease Control and Prevention. (2019). TBI: Get the facts. Retrieved March 20, 2020, from https://www.cdc.gov/traumaticbraininjury/get_the_facts.html

2. American Academy of Family Physicians. (2018). Traumatic brain injury: Overview. Retrieved March 20, 2020, from https://familydoctor.org/condition/concussion/

3. Centers for Disease Control and Prevention. (2019). What is a concussion? Retrieved March 20, 2020, from https://www.cdc.gov/headsup/basics/concussion_whatis.html

4. Centers for Disease Control and Prevention. (2019). TBI: Potential effects. Retrieved February 22, 2017, from https://www.cdc.gov/traumaticbraininjury/get_the_facts.html

5. National Institute of Neurological Disorders and Stroke. (2019). Stroke information page. Retrieved March 20, 2020, from https://www.ninds.nih.gov/Disorders/All-Disorders/Stroke-Information-Page

6. National Institute of Neurological Disorders and Stroke. (2019). Meningitis and encephalitis fact sheet. Retrieved March 20, 2020, from https://www.ninds.nih.gov/Disorders/All-Disorders/Meningitis-and-Encephalitis-Information-Page

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Learn about TBI, its symptoms, and its risk factors.

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Definition

Traumatic brain injury (TBI) under federal law means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects the student's educational performance. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more of the following areas:

cognition

language

memory

attention

reasoning

abstract thinking

judgment

problem-solving

sensory, perceptual, and motor abilities

psychosocial behavior

physical functions

information processing

speech

Traumatic brain injury does not apply to brain injuries that are congenital or degenerative, or induced by birth trauma.

Prevalence

The incidence of TBI peaks during three specific age periods: birth to 5 years of age, 15-24 years of age, and over 70 years of age. About 80,000 to 90,000 of the 475,000 children who have sustained TBIs are permanently disabled from their accidents or injuries. About 180 per 100,000 children under age 15 experience TBIs and of that number, 5% to 8% experience severe TBIs.

Characteristics

The Brain Injury Association (formerly the National Head Injury Foundation) calls TBI "the silent epidemic," because many children have no visible impairments after a head injury. Symptoms can vary greatly depending upon the extent and location of the brain injury. However, impairments in one or more areas (such as cognitive functioning, physical abilities, communication, or social/behavioral disruption) are common. These impairments may be either temporary or permanent in nature and may cause partial or total functional disability as well as psychosocial maladjustment.

Children who sustain TBI may experience a complex array of problems, including the following:

Medical/Neurological Symptoms: speech, vision, hearing and other sensory impairment, decreased motor coordination, difficulty breathing, dizziness, headaches, impaired balance, loss of intellectual capacities, partial to full paralysis, reduced body strength, seizures, sleep disorders, and speech problems.

Cognitive Symptoms: decreased attention, organizational skills, and problem solving ability; difficulty with abstract concepts; memory deficits; perceptual problems; poor concentration, poor judgment; slowed information processing, and poor memory.

Behavioral/Emotional Symptoms: aggressive behavior, denial of deficits, depression, difficulty accepting and responding to change, loss of reduction of inhibitions, distractibility, feelings of worthlessness, lack of emotion, low frustration level, helplessness, impulsivity, inappropriate crying or laughing, and irritability.

Social Skills Development: difficulties maintaining relationships, inability to restrict socially inappropriate behaviors, inappropriate responses to the environment, insensitivity to others' feelings, limited initiation of social interactions, and social isolation.

Any or all of the above impairments may occur to different degrees. The nature of the injury and its attendant problems can range from mild to severe, and the course of recovery is very difficult to predict for any given student. It is important to note that with early and ongoing therapeutic intervention the severity of these symptoms may decrease, but only in varying degrees.

Impact on Learning

Despite its high incidence, many medical and education professionals are unaware of the consequences of childhood head injury. Students with TBI are too often inappropriately classified as having learning disabilities, emotional disturbance, or mental retardation. As a result, the needed educational and related services may not be provided within the special education program. The designation of TBI as a separate category of disability signals that schools should provide children and youth with access to and funding for neuropsychological, speech/language, educational, and other evaluations necessary to provide the information needed for the development of an appropriate individualized educational program (IEP).

While the majority of children with TBI return to school, their educational and emotional needs are likely to be very different from what they were prior to the injury. Although children with TBI may seem to function much like children born with other handicapping conditions, it is important to recognize that the sudden onset of a severe disability resulting from trauma is very different. Children with brain injuries can often remember how they were before the trauma, which can result in a constellation of emotional and psychosocial problems not usually present in children with congenital disabilities. Further, the trauma impacts family, friends, and professionals who recall what the child was like prior to injury and who have difficulty in shifting and adjusting goals and expectations.

Teaching Strategies

Therefore, careful planning for school re-entry (including establishing linkages between the trauma center/rehabilitation hospital and the special education team at the school) is extremely important in meeting the needs of the child. It will be important to determine whether the child needs to relearn material previously known. Supervision may be needed (i.e. between the classroom and restroom) as the child may have difficulty with orientation. Teachers should also be aware that, because the child's short-term memory may be impaired, what appears to have been learned may be forgotten later in the day. To work constructively with students with TBI, educators may need to:

Provide repetition and consistency

Demonstrate new tasks, state instructions, and provide examples to illustrate ideas and concepts

Avoid figurative language

Reinforce lengthening periods of attention to appropriate tasks

Probe skill acquisition frequently and provide repeated practice

Teach compensatory strategies for increasing memory

Be prepared for students' reduced stamina and increased fatigue and provide rest breaks as needed

Keep the environment as distraction-free as possible

Initially, it may be important for teachers to gauge whether the child can follow one-step instructions well before challenging the child with a sequence of two or more directions. Often attention is focused on the child's disabilities after the injury, which reduces self-esteem; therefore, it is important to build opportunities for success and to maximize the child's strengths.

Find out as much as you can about the child's injury and his or her present needs. Find out more about TBI. See the list of resources and organizations at the end of this publication.

Give the student more time to finish schoolwork and tests

Give directions one step at a time. For tasks with many steps, it helps to give the student written directions

Show the student how to perform new tasks. Give examples to go with new ideas and concepts

Have consistent routines. This helps the student know what to expect. If the routine is going to change, let the student know ahead of time

Check to make sure that the student has actually learned the new skill. Give the student lots of opportunities to practice the new skill

Show the student how to use an assignment book and a daily schedule. This helps the student get organized

Realize that the student may tire quickly. Let the student rest as needed

Reduce distractions

Keep in touch with the student's parents. Share information about how the student is doing at home and at school

Be flexible about expectations. Be patient. Maximize the student's chances for success

Assistive Technology:

Due to the various levels of traumatic brain injury, multiple types of assistive technology may be used. As with any student with disability, the assistive technology would need to address student accessibility to the educational curriculum. For students with TBI, assistive technology falls into three categories:

Devices for Memory and Organization: These assistive technology devices focus on helping the student with memory and organization difficulties. This includes a wide range of devices:

Devices to Access Information: These assistive technology devices focus on aiding the student to access the educational material. These devices include:

speech recognition software

screen reading software

tinted overlays for reading (this may help with visual processing)

academic software packages for students with disabilities

Devices for Positioning and Mobility: These assistive technology devices focus on helping the student participate in educational activities. These devices include:

canes

crutches

wheelchairs

specialized beds

specialized chairs, desks, and tables

Organizations

Brain Injury Association (formerly the National Head Injury Foundation)

The Brain Injury Association of America (BIAA) is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). Their mission is to create a better future through brain injury prevention, research, education and advocacy.

8201 Greensboro Drive, Suite 611
McLean, VA 22102

Center for Disability and Development

Dept. of Educational Psychology
4225 Texas A&M University
College Station, TX 77843-4225

Emergency Medical Services for Children - National Resource Center

The EMSC Program is dedicated to collaborating with federal partners to support EMSC research infrastructure and improve the quality and quantity of EMSC research.

111 Michigan Avenue N.W.
Washington, DC 20010

Family Caregiver Alliance

FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.

180 Montgomery St., Suite 1100
San Francisco, CA 94104

Family Voices

Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals.

2340 Alamo SE, Suite 102
Albuquerque, NM 87106

Head Injury Hotline

This hotline is composed of a multidisciplinary team trained in traumatic brain injury. Consultants include individuals with TBI, family members, learning specialists, nurses, paraprofessionals, lawyers, neuropsychologists, and physicians specializing in emergency medicine, and neurology. The TBI Consulting Team offers consultations, research assistance, case management services, legal services, and in-service training. They serve individuals with brain injuries and their families, government officials, agency heads, educators, medical and legal professionals, and social workers.

212 Pioneer Building
Seattle, WA 98104-2221

National Resource Center for Traumatic Brain Injury (NRC TBI)

The National Resource Center for Traumatic Brain Injury is supported by NIDRR to provide research and technical assistance to professionals who work with individuals with traumatic brain injuries. They provide articles, trainings, and conferences.

Department of Physical Medicine and Rehabilitation
P.O. Box 980542
Richmond, VA 23298-0542

References

Gargiulo, R.M. (2006). Special education in contemporary society: An introduction to exceptionality. Belmont, CA: Thomson Wadsworth.

Turnbull, A., Turnbull, R. & Wehmeyer, M. L. (2007). Exceptional lives: Special education in today's schools. Upper Saddle River, NJ: Pearson Merrill Prentice Hall.

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Traumatic brain injury (TBI) under federal law means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects the student's educational performance.

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https://www.hopkinsmedicine.org/health/conditions-and-diseases/traumatic-brain-injury

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What is traumatic brain injury?

Traumatic brain injury (TBI) happens when a sudden, external, physical assault damages the brain. It is one of the most common causes of disability and death in adults. TBI is a broad term that describes a vast array of injuries that happen to the brain. The damage can be focal (confined to one area of the brain) or diffuse (happens in more than one area of the brain). The severity of a brain injury can range from a mild concussion to a severe injury that results in coma or even death.

What are the different types of TBI?

Brain injury may happen in one of two ways:

Closed brain injury. Closed brain injuries happen when there is a nonpenetrating injury to the brain with no break in the skull. A closed brain injury is caused by a rapid forward or backward movement and shaking of the brain inside the bony skull that results in bruising and tearing of brain tissue and blood vessels. Closed brain injuries are usually caused by car accidents, falls, and increasingly, in sports. Shaking a baby can also result in this type of injury (called shaken baby syndrome).

Penetrating brain injury. Penetrating, or open head injuries happen when there is a break in the skull, such as when a bullet pierces the brain.

What is diffuse axonal injury (DAI)?

Diffuse axonal injury is the shearing (tearing) of the brain's long connecting nerve fibers (axons) that happens when the brain is injured as it shifts and rotates inside the bony skull. DAI usually causes coma and injury to many different parts of the brain. The changes in the brain are often microscopic and may not be evident on computed tomography (CT scan) or magnetic resonance imaging (MRI) scans.

What is primary and secondary brain injury?

Primary brain injury refers to the sudden and profound injury to the brain that is considered to be more or less complete at the time of impact. This happens at the time of the car accident, gunshot wound, or fall.

Secondary brain injury refers to the changes that evolve over a period of hours to days after the primary brain injury. It includes an entire series of steps or stages of cellular, chemical, tissue, or blood vessel changes in the brain that contribute to further destruction of brain tissue.

What causes a head injury?

There are many causes of head injury in children and adults. The most common injuries are from motor vehicle accidents (where the person is either riding in the car or is struck as a pedestrian), violence, falls, or as a result of shaking a child (as seen in cases of child abuse).

What causes bruising and internal damage to the brain?

When there is a direct blow to the head, the bruising of the brain and the damage to the internal tissue and blood vessels is due to a mechanism called coup-contrecoup. A bruise directly related to trauma at the site of impact is called a coup lesion (pronounced COO). As the brain jolts backward, it can hit the skull on the opposite side and cause a bruise called a contrecoup lesion. The jarring of the brain against the sides of the skull can cause shearing (tearing) of the internal lining, tissues, and blood vessels leading to internal bleeding, bruising, or swelling of the brain.

What are the possible results of brain injury?

Some brain injuries are mild, with symptoms disappearing over time with proper attention. Others are more severe and may result in permanent disability. The long-term or permanent results of brain injury may need post-injury and possibly lifelong rehabilitation. Effects of brain injury may include:

Can the brain heal after being injured?

Most studies suggest that once brain cells are destroyed or damaged, for the most part, they do not regenerate. However, recovery after brain injury can take place, especially in younger people, as, in some cases, other areas of the brain make up for the injured tissue. In other cases, the brain learns to reroute information and function around the damaged areas. The exact amount of recovery is not predictable at the time of injury and may be unknown for months or even years. Each brain injury and rate of recovery is unique. Recovery from a severe brain injury often involves a prolonged or lifelong process of treatment and rehabilitation.

What is coma?

Coma is an altered state of consciousness that may be very deep (unconsciousness) so that no amount of stimulation will cause the patient to respond. It can also be a state of reduced consciousness, so that the patient may move about or respond to pain. Not all patients with brain injury are comatose. The depth of coma, and the time a patient spends in a coma varies greatly depending on the location and severity of the brain injury. Some patients emerge from a coma and have a good recovery. Other patients have significant disabilities.

How is coma measured?

Depth of the coma is usually measured in the emergency and intensive care settings using a Glasgow coma scale. The scale (from 3 to 15) evaluates eye opening, verbal response, and motor response. A high score shows a greater amount of consciousness and awareness.

In rehabilitation settings, here are several scales and measures used to rate and record the progress of the patient. Some of the most common of these scales are described below.

Rancho Los Amigos 10 Level Scale of Cognitive Functioning. This is a revision of the original Rancho 8 Level Scale, which is based on how the patient reacts to external stimuli and the environment. The scales consist of 10 different levels and each patient will progress through the levels with starts and stops, progress and plateaus.

Disability Rating Scale (DRS). This scale measures functional change during the course of recovery rating the person's disability level from none to extreme. The DRS assesses cognitive and physical function, impairment, disability, and handicap and can track a person's progress from "coma to community."

Functional Independent Measure (FIM). The FIM scale measures a person's level of independence in activities of daily living. Scores can range from 1 (complete dependence) to 7 (complete independence).

Functional Assessment Measure (FAM). This measure is used along with FIM and was developed specifically for people with brain injury.

The Brain Injury Rehabilitation Program

Rehabilitation of the patient with a brain injury begins during the acute treatment phase. As the patient's condition improves, a more extensive rehabilitation program is often begun. The success of rehabilitation depends on many variables, including the following:

Nature and severity of the brain injury

Type and degree of any resulting impairments and disabilities

Overall health of the patient

Family support

It is important to focus on maximizing the patient's capabilities at home and in the community. Positive reinforcement helps recovery by improving self-esteem and promoting independence.

The goal of brain injury rehabilitation is to help the patient return to the highest level of function and independence possible, while improving the overall quality of life- physically, emotionally, and socially.

Areas covered in brain injury rehabilitation programs may include:

Self-care skills, including activities of daily living (ADLs): feeding, grooming, bathing, dressing, toileting, and sexual functioning

Physical care: nutritional needs, medicines, and skin care

Mobility skills: walking, transfers, and self-propelling a wheelchair

Communication skills: speech, writing, and alternative methods of communication

Cognitive skills: speech, writing, and alternative methods of communication

Socialization skills: interacting with others at home and within the community

Vocational training: work-related skills

Pain management: medicines and alternative methods of managing pain

Psychological testing and counseling: identifying problems and solutions with thinking, behavioral, and emotional issues

Family support: assistance with adapting to lifestyle changes, financial concerns, and discharge planning

Education: patient and family education and training about brain injury, safety issues, home care needs, and adaptive techniques

The Brain Injury Rehabilitation Team

The brain injury rehabilitation team revolves around the patient and family and helps set short- and long-term treatment goals for recovery. Many skilled professionals are part of the brain injury rehabilitation team, including any or all of the following:

Types of Brain Injury Rehabilitation Programs

There are a variety of brain injury treatment programs, including the following:

Acute rehabilitation programs

Subacute rehabilitation programs

Long-term rehabilitation programs

Transitional living programs

Behavior management programs

Day-treatment programs

Independent living programs

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Acquired brain injury hapens when a sudden, external, physical assault damages the brain. It is one of the most common causes of disability and death in adults.