Considerable attention has been devoted to examining the types of educational materials (i.e. discharge instructions) supplied to patients and caregivers admitted to emergency care with mTBI. Survey studies focused on collecting and comparing such materials from regional hospitals have been conducted in the United States and Canada (15), England (16), Australia (17), Scotland (18), and New Zealand (19). These reports have emphasised the wide variability in the content provided to patients with mTBI and have called for more uniform, more accurate, and easier-to-read materials. The span over which these papers have appeared—1997 to 2014—suggests that the need for such materials may remain unmet.

Several empirical studies have examined the conditions under which patients receive mTBI-related education in emergency care, as well as patients’ or caregivers’ comprehension or memory for various kinds of discharge instructions. One study found that education about mTBI was more frequently provided when a diagnostic code of ‘concussion’ was used relative to codes of motor vehicle collision (MVC) or whiplash, even though more people with the MVC diagnosis reported symptoms consistent with mTBI (20). In two studies, patients with mTBI were interviewed after emergency discharge and queried about the discharge instructions they had received. Both found that many patients did not recall having been given instructions even when they had (21, 22). Memory for instructions was inconsistent, and worse for those with longer periods of post-traumatic amnesia (21). A non-randomised controlled study found that instructions given in the Emergency Department to patients with mTBI were understood and recalled better after 48 hours when verbal instruction was given along with written material, compared to written material alone (23).

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).

The remaining six papers were descriptions of treatment models for mTBI that included education; one offered a written educational guide that could be copied and offered to patients (26). Three were early (1980’s to 1990’s) descriptions of treatment approaches (27–29). The two more recent papers emphasised the use of a biopsychosocial model to address the complexities of symptomatic mTBI, and both stressed the importance of keeping up with the burgeoning mTBI literature so that patient education and other treatment would continue to be evidence-based (30, 31). The purpose of education in such programmes was described as helping to prevent misattribution of everyday cognitive slips to the TBI, and to prevent catastrophizing symptoms.

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).

About 40% (n=22) of the moderate/ severe articles were descriptive reports, often quite brief, of programmes that included family (more rarely, family + patient) education without evaluative data. Nine of these were published in the 1980s or 1990s (48–56), when specialty TBI programmes were relatively new; thus the purpose of such papers appeared to be the sharing of ideas and models for assisting family members to understand and cope with the injury. While undoubtedly useful at the time, these articles may now have limited utility; for example, one suggests the practice of videotaping to supplement discharge instructions (56), which is now commonplace. Others included bibliographies (52, 53), now outdated, that were intended to be shared with patients or family members.

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.

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).

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).