Conclusions, Implications, Recommendations and Further Research
Conclusions and Implications
The results of the survey indicated some surprising conclusions. Although the literature points to the necessity for psychological, especially neuropsychological, testing after TBI, many individuals are not receiving it. When looking at the results of the study in terms of who has not recommended such testing, doctors and schools certainly stand out. Both doctors and schools are ostensibly in the business of assessing cognitive abilities, albeit for different reasons and from different perspectives. It is suggested that they both routinely and consistently recommend neuropsychological evaluations after TBI. The study results concurred with earlier studies which have reported higher frequencies of problems after TBI in the areas of memory, concentration and word-finding or talking. However, the findings in this study also demonstrated that many PostConcussional symptoms cited as of short duration (<6 months or <1 year) in some of the literature linger on longer. Also, some symptoms cited as PostConcussional in other studies were reported, not just by PostConcussional or mild or moderate TBI patients, but by participants with more severe head trauma. PostConcussional trauma has been placed in a separate category from severe head injury trauma in some psychological and medical studies. The recovery period from PostConcussional trauma had also been arbitrarily set at 6 months in some sources and 1 year in others. This study showed that some individuals with mild or PostConcussional injurreported longer time frames of symptomatology.
This study also showed that the symptoms between various degrees of brain trauma are often similar. The study showed that the symptoms reported by mild, moderate and severe head trauma survivors included those reported under PostConcussional studies. The categories overlap. PostConcussional and mild injury survivors should be told that symptoms can and do last longer than arbitrary 6 month or 1 year time frames. Moderate and severe injury survivors may be counseled that measurable improvements in symptom severity in some categories are reported post-two-years TBI by this and other newer studies.
Eighty percent felt changed by their TBI. This change in self-image can be very upsetting for the survivor. The survivor and his personal network of family, friends, coworkers, etc. should be prepared by counselors and others for these personality modifications since adjustments are required by everyone. There was no surprise in the finding that most of the survivors reported challenging emotional reactions (such as sadness, confusion, anger, fear, shame and guilt) to the TBI event itself. But families, friends, doctors, and co-workers should also not be surprised if a survivor has a “no feeling” reaction or euphoric reaction to TBI. The detachment or elation reaction is a potential mechanism for coping,too. However, individuals emitting this reaction may also have undergone a severe emotional trauma from the TBI event. Others should be counseled that an attitude of complacency or elation on the part of the survivor may in fact mask brain injury, or more frightening emotional reactions going on internally or unconsciously for the survivor. The emotional response to the trauma may ultimately surface in other ways. The survivor himself, his loved ones, and other interested parties may not connect the TBI trauma and the subsequent unusual behaviors the survivor may manifest, such as withdrawal, anger,sadness, etc. Therefore, counselors should address these issues with the survivor, his or her family, and other interested parties.
There was a large array of both positive and negative responses to emotionally cope with th post-TBI period. People, including survivors, are different. Some respond more positively. Some respond more negatively. Everything must be done to identify those who continue to suffer because of negative coping skills. Sometimes profoundly disabled TBI survivors have happier, more optimistic outlooks on life than relatively more mildly disabled survivors who are completely emotionally immobilized because of TBI.
This is why it is important for TBI survivors to be advised of the numerous sources of emotional support available. It should be standard procedure that hospitals, rehabilitation centers, doctors, teachers, counselors, psychologists and schools advise survivors as to sources of emotional support.
Sources of emotional support.
This study indicated that, as expected, the family was a great source of emotional support for many of the survivors. People with spiritual conviction were blessed to also know that God (or other Higher Power) provided emotional support. Support groups were helpful to a majority. Unfortunately, the medical community, doctors, hospitals, schools, and teachers rated much lower in the area of emotional support. However there were some all the support needed ratings, which presumably reflected that there were some teachers and doctors who were kind, sympathetic, caring individuals.
Treatment and information.
This study found that several theoretically very good sources of treatment and information were not getting high ratings. Institutions such as hospitals, schools, and special education classes did not rate as highly as families, counselors, psychologists, and support groups. Doctors and teachers, paid for their expertise, also rated lower. Books and magazines rated very low. An alternative explanation for low ratings is that many of these sources, for example, books and magazines, are being underemployed by the TBI survivor community. Reading difficulties may prevent many survivors of TBI from utilizing books and magazines. Survivors should beinformed of and given useful publications. Alternative sources such as audio and visual materials should be produced and provided to survivors of TBI. Doctors, hospitals, support groups, and teachers should be informed andinformative as to materials produced about TBI for the survivor and his or her family. Teacher and schools need further training on TBI so they can pass along helpful data to survivors and their families.
Coordination and cooperation.
A noticeable minority reported no cooperation between school and hospital or between school and rehabilitation center. This finding is new. It is imperative that professionals improve the coordination and cooperation efforts for the well-being of the survivors.
Not all who needed school accommodations received them. In fairness to the school system, some of the individuals making these assessments of the school system were in school years ago. They reported an uncaring school system which was uninformed as to TBI. One individual described a school district that had no adaptive PE. Because of his TBI, he was unable to take regular PE. The high school counselor informed him that because hewas one unit short in physical education, he wasn’t going to be able to graduate from high school. The survivor and his family fought this decision and he was allowed to graduate. The system that made such rigidity in thinking possible no longer exists.
Schools are now making accommodations and modifications as a routine matter. Once schools are informed as to TBI-engendered deficits, they often make many attempts to accommodate survivors. The key point is that schools need to be knowledgeable as to TBI-engendered deficits so that the correct curriculum and other modifications may be implemented for the survivor. The survivor often isn’t going to know all of his own needs, so it is the responsibility of the schools and their assessment teams to figure out what is needed. On the other hand, sometimes the survivor or his family or doctor will know exactly what limitations there are. When limitations are reported to the school, modifications should be made.
Survivors’ helpful devices.
The survivors reported utilizing many helpful devices such as diaries, memory systems, palmtop computers, and memory logs. The devices used are the same types of devices any organized, efficient individual would use to stay on top of things. Therefore, it might be of benefit to analyze what successful workers, executives, professionals, etc. use to organize and manage their lives. This information could then be converted into structures, strategies, procedures, and habits that survivors of TBI could emulate.
Much information regarding TBI has come to light in recent years. However, there are countless individuals who sustained TBI years ago sequestered away in nursing homes and group homes. There are injured adult survivors living at home with their aging parents. Survivors and families that have given up hope or just choose to accept the limitations of years ago may not know of the inroads that are being made into the rehabilitation from TBI. Efforts should be made by survivor support groups and concerned professionals and other individuals to reach out to these forgotten survivors of TBI. These individuals and their families should be welcomed to support groups. Support groups should make sure that someone in the group is responsible for communicating the latest medical, technological, educational, and rehabilitative advances to them. More support groups need to be formed. Survivors and their families, teachers, and other concerned individuals should be encouraged to access the myriad of books and magazines available on the subject of TBI.
Professionals, such as doctors, psychologist, counselors, and teachers, need to be informed and to share new developments and resources with their clients. Professionals should prepare and maintain resource lists of information and support that they hand out to any survivor with whom they interact. It may not have occurred to the survivor or to his or her family that support groups or materials exist. Therefore, professionals need to be proactive by providing this information whether asked for it or not. If the survivor is too cognitively impaired, or too emotionally inflexible due to TBI to accept resource material, the professional should seek out the survivors’ loved ones and provide them with the material. (A time may come when the survivor is ready to attend support group meetings or read magazines about TBI.)
Recommendations Regarding the School System and TBI
In the average metropolitan school district, 90 to 100 students a year will suffer significant traumatic brain injuries (Kalsbeeck, 1980). By age 15, 3% of all students have sustained a head injury. Prior to the IDEA Act of 1990, students with TBI were given labels of other handicapping conditions and often placed in categories not well suited to their rapidly changing needs. IDEA made TBI a category by itself. However, placement of the TBI survivor varies. For example, Donders (1992) studied the academic placement of 87 6-to-16 year olds who had sustained brain injuries with documented loss of consciousness. Forty-five returned to regular programsand 21 moved to regular education with special education support less than 50% of the school day (resource, tutor, teacher consult). The remaining 21 were placed in special education for more than 50% of their school day.
Transition planning from hospital, rehabilitation center, and home to school requires coordination between all involved professionals and the family of the survivor. A designee from the school should coordinate all communications. Therapies initiated in the rehabilitation network should be continued in the school system as much as possible.
Community professionals who may evaluate the student include the neurologist, neuropsychologist, physical and occupational therapist, audiologist, and ophthalmologist. The school diagnostic team includes the school psychologist, administrator, special education teacher, resource teacher, school nurse, and general education teacher. Based on various assessments, a student study team will determine the special needs of the student.
Making the transition back into school can be facilitated by preparing the survivor, the family, the school, the class, and the teachers for reentry. The family and school personnel expected to interact with the student should be educated about TBI. Educators who knew the student before must be advised of how the student will now be different.
If necessary, an individualized education plan (IEP) will be proposed and implemented for the student. The goal of the IEP meeting should be to identify the unique educational needs of the student with TBI and to marshal necessary school resources to meet those needs (Mira, Siantz & Tyler, 1991). Frequent reevaluations and changes in IEP’s are necessary. Recovery may be rapid, so IEP goals and objectives will need to be revised more often than is the norm in other special education programs. Since each traumatic brain injury is unique, it is essential that each student’s individual needs be considered.
Various guidelines have been established to determine when a child is ready to come back to school after a TBI (Mira & Siantz Tyler, 1991; Pieper, 1991). Their recommendations as to what the student should be capable of doing prior to reentering the school included the following:
- sustain attention to a task 10-15 minutes
- tolerate 20 to 30 minutes of normal class stimulation (movements, distractions, noises) without a break
- follow simple directions
- function in a group of two or more students
- give evidence of meaningful communication
- interact with the environment
Often the student starts back to school in a homebound instruction program. Ideally, the home-school teacher should be knowledgeable about TBI and able to adjust materials to fit the unique needs of the student with TBI. The student may be encouraged to make trips to visit school prior to return to the classroom.
Teachers should keep a watchful eye out for TBI. Teachers should particularly keep TBI in mind when dealing with students who previously were victims of child abuse or student athletes who are involved in contact sports. There may have been TBI recently or in the past that has never been diagnosed. At other times evidence of TBI in the student’s remote past is buried deep in the student’s cumulative school record, forgotten by the student, his family, and other school personnel. Teachers can provide an important function in this regard, because they may be the only person to ever “spot” the problem.
Complaints teachers may hear that could signal TBI include dizziness, headache, or tiredness. If TBI is expected, assessments for changes in sensory function (hearing, smell, taste, touch, vision) and fine and gross motor problems should be made. A student may complain that he or she can’t see, hear, or taste correctly, or is having trouble feeling hot or cold. Parents might report that the student is having sleep problems, is bed wetting, is having trouble getting going, or is getting lost a lot. A student may have trouble with attention, concentration, short-term and long-term memory, processing speed, or response time. A student might exhibit emotional lability or disinhibition. His or her performance and attitude might have suddenly changed. Of course, all of these symptoms could be caused by other things, such as learning disabilities, problems at home or theflu, but it is important that the teacher keep TBI in mind as a possibility. Teachers should report any unresolved suspicions to the principal, nurse, and psychologist, and the student should be referred for appropriate assessment. When TBI is expected, the student’s family must be advised so that appropriate medical treatment may be initiated.
Environmental modifications may be required and accessibility issues may need to be addressed. Modifications, accommodations, and adaptations may need to be made to the school environment, the curriculum, the form of instruction, and the schedule. These will be discussed in the IEP. Examples of time modifications include reducing the length of the class day or the class time, extending the school year, and delaying graduation. Content modifications include altering the types of classes taken, the curriculum required, and the instruction given. Location modifications include extending transition times and providing home schooling.
Allowing modifications and accommodations may be necessary because the student with TBI may have problems such as fatigue, anxiety, or agitation. Loud noises, crowds, long bus rides, and standing may be tiring, overstimulating, or stressful for the student with TBI. Providing frequent rest periods and allowing the student a quiet place, such as the nurse’s office, where he or she can lie down and rest during breaks may be indicated.
Accommodations that may be made include providing extra time on exams, adaptive physical education, and the use of adaptive computers. Other people may be utilized as tray holders at lunch, note-takers in class, and as escorts for survivors around the school and to classes. Additional accommodations include providing for early seating of the student and beginning and ending school in a particular spot, for example, the resource room. Allowing for survivors to have an extra set of school books at home may also be helpful.
Curriculum may need to be modified. Concepts may need to be retaught. The survivor may have retained some higher level cognitive abilities, but lost some lower level abilities. Survivors’ problems in the following areas must be addressed:
interpretation of abstract language
comprehension of figurative language
organization of ideas
specific study skills
Special adaptation for visual perceptual difficulties include the use of arrows, cue words, color coding, large print books, books on tape, and a white cardboard with a cut-out window to expose one line at a time. Special adaptations for fine motor problems include using a felt tip pen, word processor, clipboard to stabilize paper, tape recorder to record lectures, and a note taker using carbon paper. Other adaptive equipment may also be needed.
Teachers can provide valuable functional training to help survivors plan for career, social, and other life goals. Teachers can help survivors deal with living, medical, leisure, and transportation issues. They may also be involved in the transition from school to other community-based agencies such as the rehabilitation department.
In-service education and staff development.
It is recommended that teachers and other school personnel receive appropriate in-service training regarding traumatic brain injury. It is recommended that teachers keep the following in mind when interacting with the survivor of TBI (Hultberg, 1996):
- Acknowledge the seriousness of injury and potentiality for permanency of some deficit areas.
- Stress to the survivor of TBI that he or she has both long-term (years) and short-term (months) rehabilitative capabilities.
- Recognize that the most common cognitive sequelae of TBI are problems with attention and memory, and slower processing speeds.
- Recognize that, along with instruction and rehabilitation, there may be some spontaneous remission for deficits as a result of the natural brain healing process.
- Determine the survivor’s cognitive, behavioral, emotional, executive, and physical strengths and weaknesses.
- Recognize that the survivor may or may not have retained all or portions of his or her pre-TBI knowledge base. (This includes learned words, skills, concepts, routines, strategies, procedures, organizations, and principles (Ylvisaker and Szekeres, 1989).
- Teach to the TBI’s new learning style and pattern.
- Teach to restore where physiologically possible.
- Teach to internalize compensatory strategies for what is not restorable.
- Start with specific tasks and generalize to functional tasks.
- Provide positive support to help the survivor deal with his or her new situation.
Cognitive and curricular.
In the area of reasoning, one must take into account the developmental level of the survivor both before and after the brain trauma. The teacher must ask what developmental level (based on age, schooling, and other factors) the survivor was at before the trauma. The teacher may ask what Piagetian stage of development (sensorimotor, operational, concrete, or formal) the survivor previously attained based on his or her age, school, and other records. The teacher must then determine at what level the survivor was immediately after the TBI and at what level the survivor is presently. In this way, the level of continuum of improvement, a helpful indicator, might be ascertained. Neurological reports, neuropsychological evaluations, reports of rehabilitative specialists and therapists, formal and informal teacher assessments, and parental interviews will assist in providing the teacher with this information.
If there are deficits in the area of reasoning, Henry (1983) recommended the teaching of associations, comparisons, and categories. Judgment includes issues such as self-awareness, reaction time, distractibility, impulsiveness, and decisiveness. Henry recommended that, when needed, the survivor carry simple cue cards. He suggested that the survivor should be taught to habituate safety messages. For example, at street crossings, he or she should internalize the thought, “Should I go ahead now?”
Closely related to judgment is the issue of problem-solving ability. The teacher should ask whether or not the survivor of TBI can solicit, process, and act on new information. According to Ylvisaker and Szekeres (1989), the absence of problem-solving ability was characterized by random behaviors. Simple problem-solving ability was exemplified by utilization of the trail-and-error method. Selecting a viable solution and trying it out was characteristic of concrete-operational problem-solving. The highest form of problem-solving thinking was hypothetico-deductive. Using this process, the thinker considered a number of possible solutions, selected the best alternative, and implemented it. Ylvisaker and Szekeres recommended that the survivor be prompted to think out loud during problem solving tasks so that his or her problem-solving abilities might be assessed.
Pieper (1991) found the following materials to be useful in working with survivors of TBI:
Short series of individual process cards
Simplified flow charts
Special clock cards
Bookmarks with time and date due written thereon
Color-coded assignment logs
Videotapes of the survivor (which he or she watches)
Old fashioned children’s games
Computer software within his or her limitations.
Survivors of TBI will need instruction to relearn information that has been lost, restore cognitive processes, and compensate for lost and unretrievable skills. At the same time that they are reassimilating pre-learned data, they will be learning new information. Survivors will require prompts and cues, but will also need to be challenged so that they may increase self-engendered abilities to process and store information. The teacher must balance these requirements of survivors. A teacher should help the survivors internalize helpful strategies. The teacher should brainstorm with the survivors about their strengths and weaknesses and encourage them to take an active role in the implementation of their own recovery.
In the area of attention, the survivor needs to learn how to maintain attention, to switch attention, and to screen out unimportant information (Henry, 1984). Mateer and Sohlberg (1988) recommended a retraining approach. They found that compensatory training aids, such as the maintenance of a memory book and attention process training (APT), helped the survivor to sustain attention and switch attention between stimuli. Henry (1984) recommended teaching the use of habitual self-instruction. He suggested that the student be educated to ask “Am I paying attention? Do I need to look? Do I need to listen?” (p. 201).
In the area of orientation, the survivor must be able to orient to himself, others, times, locations and routines. Henry (1984) recommended the survivor be taught to refer to written or picture cues and to scan the immediate environment for needed cues. He also suggested that the survivor should have a mini-guide with photos and vital personal information on it.
Self-inhibition deficits may appear as socially inappropriate behavior or rigid, inflexible thinking. Teachers can utilize activities in which the survivor must learn to wait such as turn-taking art projects or group puzzles. Another technique is to practice acceptable behaviors by role-playing or writing down tactful responses to confrontational situations.
Problems in the area of self-initiation may manifest themselves as problems in starting activities, trouble interacting with others, or difficulty acting spontaneously. Activity may be triggered by using alarm watches, by positioning the survivor around other people, or by rewarding the survivor for initiating activity.
Self-monitoring and self-evaluating deficits may be compensated for by teaching the use of such self-tracking devices as graphs, charts, daily logs, and daily posted reminders. The teacher might help the student survivor make realistic self-assessments. The teacher may ask the survivor to assess how he or she thinks he or she did on an assignment. The teacher and the survivor may then compare the survivor’s self-evaluation with the actual results.
In the area of language disorders attributable to TBI, Schwartz-Cowlet and Stepanik distinguished between early (sensori-motor stimulation), middle (basic auditory and visual comprehension), and late (attention and memory compensatory strategies) states of recovery therapies for the rehabilitation of TBI survivors. They recommended that speech pathologists commence interventions during the acute stage of TBI (at the hospital), although they acknowledged that whether or not this early intervention is beneficial needs to be evaluated in controlled studies.
In the area of receptive language processing, the teacher should ask how long, how accurately, and how quickly the survivor can process communications. Can he or she concentrate on, understand, and remember oral or written communications? Can he or she understand idiomatic language? Can he or she tune out distractions when reading or listening? Speakers may need to slow down, restate, or clarify their utterances for a survivor to process their communications effectively.
Strategies in the area of receptive language include teaching the survivor to seek clarification of unclear information. If the speed of input (the speed of the speaker) is too fast, the survivor should be advised to interject questions to slow the pace. The survivor might also try repeating or summarizing what he or she has heard as a way to help the input process. Tape recording data for later review is another strategy. The survivor might also be taught to scan the face of the speaker for visual cues of meaning. Lastly, the survivor and teacher might agree upon the use of a prearranged signal which the survivor may use in class which signifies content overload.
In the area of expressive communication, the teacher should ask whether or not the student expresses thoughts clearly. Does the survivor student have word-finding or naming problems? The survivor should be taught to make word associations, to use gestures, or to draw concepts where possible. There are also strategies in the area of written expression. Milton (1988) gave a good example of a memo-writing strategy. His student was a working individual who had to prepare many memos. He counseled him to:
- Mark where each sentence ends.
- Evaluate the length of each sentence.
- Evaluate if each sentence clearly conveys his or her thoughts.
- Make changes.
- Reread after making changes.
Schwartz-Cowlet and Stepanik (1989) pointed out that injury from focal (localized brain damage) may require different language-processing strategies than diffuse brain injury. Dennis (1992) speculated that utilizing learning disability strategies might be a successful plan of action, but conceded that studies are required to best ascertain what strategies are truly the most effective in the area of language deficits.
Executive function issues.
Executive dysfunction is manifested as the inability to initiate, plan, organize, or follow through on activities or goals. According to Ylvisaker and Szekeres (1989), there has been insufficient development and assessment of strategies to deal with executive dysfunction. They recommended using metacognitive strategies to assist the survivor to facilitate his own learning and relearning. For example, they advised the survivor be taught to systematically rehearse steps required in an activity. Also the survivor should be taught to consciously select between strategies to complete a task. They also counseled that schools not over program and structure the affairs of students to such an extent that they are not allowed to develop their own executive-functioning skills. Survivors of TBI need to be given opportunities to make their own choices, formulate their own goals, and plan their own activities, and make their own decisions whenever possible.
Recommendations for Further Research
Much of the qualitative material extrapolated in this study should be focused upon in a more quantitative fashion. A study might be undertaken in which a post hoc analysis of the severity of medical condition based on medical records is correlated with many of the research outcomes addressed in this study. Results could then be quantified based on injury severity variables.
Subsequent research could show differences in results between injury severity groups. For example, is there a statistical connection between injury severity or nature and time off of work? Are emotional reactions to TBI different between PostConcussional, mild, moderate, and severely injured individuals? Are the PostConcussional or minor head injury survivors being identified for school accommodations and modifications with the same frequency as the severely injured survivors? What rehabilitative strategies have been shown to be most successful in helping people with mild, moderate, or severe TBI’s return to work? What kind of medical rehabilitative and other forms of follow-up have assisted survivors in returning to more normal lives? Does anything in particular better prepare survivors to return to a more normal life? What strategies are most effective in rehabilitating various TBI deficit areas?
There are also some areas that could benefit from more qualitative research. So often researchers decide on what issues are of significance to the scholarly, academic, or medical community. Survivors should be asked what issues are of significance to them. Survivors should also be given the opportunity to voice their own concerns. The best format for this sort of research would probably be the interview methodology.