Child and Youth Rehabilitation, Östersunds Hospital, Sweden.
Vilans - Dutch centre of expertise for long term care, The Netherlands.
BrainProject - Innovation in care for people with brain injury
Holland Bloorview Kids Rehabilitation Hospital, Canada.
Family and school are the environments in which children and adolescents spend by far most of their time. After a traumatic brain injury (TBI) the student returns to school with reduced abilities. It is well documented that a TBI can negatively affect school performance (1-4). After a TBI, school is also one of the main arenas where recovery and development can be promoted. To be able to offer educational settings adjusted to the changed needs of the child, to support the well-being of the child and promote recovery, schools have to have knowledge about the injury and how an adjusted school setting can be helpful for the student. However, this is often not the case. In this paper we have brought together some important notions on school reentry after TBI. Furthermore we have described recent developments in the school systems of the countries in which the authors are professionally employed.
Recovery after a TBI
Recovery after a TBI in childhood is most noticeable during the first year after injury, seen at injury ages between 4 months and 7 years (5) as well as between 6 and 12 years (6). Recovery of the brain is understood within the concept of plasticity, working through complex processes as changes in the strength of synapses and through reorganization of neural circuits (7). In the early stage after a brain injury efforts should be made to promote recovery. Beaulieu (8) states that while neural plasticity offers the potential for reorganization, it is the behavioral demands of everyday life that allows the organism to take advantage of this potential and to maximize recovery.
Returning to School after a TBI
Most injuries are mild after which the child often experiences “invisible” problems with attention, speed of information processing, headache, fatigue and irritability (9). When returning to school, noisy settings become problematic due to an inability to inhibit disturbing information. Complex tasks become
s hard to follow, which are compounded with demands for speed. The child may have missed some education during the period of injury and must meet the demands of catching up whilst also following ongoing lessons, in the presence of reduced cognitive functions[M3] .
After severe injuries, early consequences of a pediatric TBI are often seen in a wide range of areas, including problems with gross and fine motor functions, dysarthria, cognitive impairments and behavior (10). When starting school the child is likely to perform at different levels, depending on the nature and complexity of the tasks and the settings. Concrete situations requiring only minor cognitive or emotional demands can be relatively easy to accomplish. However, the child’s behavior or the efficiency of information processing may deteriorate with increased cognitive demands or psychosocial stress (11). Larger adjustments to the individual capabilities of the student can be necessary.
When dysfunction remains, adjustments in school should also be made on a long-term basis. After the period of marked recovery, changes in cognition still takes place. Some individuals seem to be catching up on the development of peers, while others have a risk of long-term poor development (12). Increased demands at school can highlight new difficulties. Dysfunctions may become more evident when developing functions are hampered by dysfunctional brain structures, for example executive functions depend on the integrity of frontal regions of the brain and are often injured by head trauma.
Interventions for Students with TBI
Ongoing scolastic succes for the student depends in part upon past experience of the teachers. If they have taught previous students with TBI, then current students tend to do better (13). This is underscored by a recent UK survey of educational professionals in Northern Ireland and the low preparedness reported by teachers to deal with the returning of a student with TBI (14). Those that knew a person with brain injury or had taught a child with brain injury knew more about the nature of the disability long term and none who had responded had any formal training regarding brain injury as an educator.
Despite the persisting hurdles for students with TBI there are succesful strategies that have shown to be helpful. First and foremost we must consider the reduction of the academic course load upon return, whether this is in the total number of courses taught, the balancing of more intense academic subjects with those which are less taxing, or the reduction of class work demands. This strategy has been described by the team at Alder Hey in the UK ((15), p. 213). The authors developed a graduated reintroduction protocol for school re-entry using the acute rehabilitation team and experienced educator. This re-entry to scholastics is often assisted by the judicious use of special education resources including remedial teaching and the use of educational assistents (16).
The appropriate provision of compensatory technologies for certain memory deficits –through the use of agenda’s and digital prostheses is also effective. Smart phones and iPod™ touches are examples of equipment that have proven useful (17-19).
Attempts at ongoing cognitive remediation in the community continue through formal therapy and tutorial support, but now technology offers additional stimulation through computer based “game” trainers such as Lumosity™. Such tools are being assessed against formal attention process training as by S. Zickefoose and colleagues (20). It appears that training within the game modules themselves is clearly evident but the issue of generalisability of the successful training has yet to be established.
Now rehabilitation programs worldwide are being examined to establish consistency in the delivery of inpatient therapy for pediatric patients. This is to ensure that medical/scientific evidence is used to maximize the quality of care and ultimately the functional outcomes for children returning to school (21).
Also of interest is the recent review of parental perception of school based support for their children with TBI. An interview based study showed that the participants received relatively few school based supports for their learning (22). This study was recently conducted in the U.S.A. with over a decade’s history of federal legislation identifying the need and eligibility of students with TBI for accommodations in their schooling.
A recent literature review regarding “The Student Perspective” in returning to school after TBI by Mealings and colleagues (23) focuses on the student experience. They selected 8 key articles reporting the students’ perspective on cognitive, emotional, physical and psychosocial challenges post TBI. There was, as expected, a wide range of experiences relating to these issues, and feedback on what was and was not helpful for these students. Again the themes of the lack of understanding by educators and the community about the effects of TBI surfaced. Their final conclusion centered on the need of the student to reconstruct their identity post TBI as they returned to the community. This is a theme that has resonated through other disability literature and the writings of Al Condeluci (24) about the route back to community and the interdependence, one upon another ((25), pp. 46-48).
Experiences from the School System in Canada
Rehabilitation specialists must catalogue and describe the new changes in function that the student has undergone, but also the student’s ongoing strengths and residual skills that can help them re-enter school and begin to compensate for new challenges. A number of authors have provided templates to follow in this process of evaluation and elucidation of issues (16, 25, 26). In Ontario, Canada, experiences are described in “Head Injury in Children & Adolescents”, Educational Outcomes, by Pam Speed (16). Each province however is responsible for the educational system within their region and this means that regional variation is significant. Only British Columbia and Newfoundland have formal learning exceptionalities defined for students after traumatic brain injury within their systems (27).
The greater challenge occurs for the student as he or she returns to school. Each school has a varied experience and level of expertise in working with a TBI survivor. A clear lack of understanding of the cognitive challenges that persist after significant TBI exists in many schools and in the teachers themselves (14). In the province of Ontario, Canada, despite efforts to the contrary, there is not a learning exceptionality for a student with acquired brain injury. The student can be identified through the current system if their learning deficits meet other diagnostic requirements (communication disorder, learning disability, a special sensory impairment), or if they demonstrate a significant behavior disorder. Only in British Columbia and Newfoundland have formal learning exceptionalities for students with TBI been developed.
The concept of invisible disability is another challenge. As described for individuals with milder injuries, most students return to school with no visible physical evidence of change after they finish early intensive rehabilitation. Teachers often remember them for the student that they used to be, and then assign motivational reasons to their academic failure when the student falls behind[M6] . This often occurs when a formal structure has not been put into place for the student in year two post discharge or more, as they progress in school. The students themselves are often loath to self identify their learning differences (23). Since there is an inability to identify the learning exceptionality for these students within the educational system, it is difficult to build the proper structure for the individual student. In Ontario, the lack of formal identification of TBI and non-traumatic brain injury as a learning exceptionality means that the issues of brain injury effects on the student are not addressed in the undergraduate educator training curriculum. Only the teacher with advanced training in special education, or those that take outside courses become familiar with the issues and challenges posed by the student with such a learning palette.
An additional quirk of our system is the process of educational program and technology planning for those with exceptionalities. It uses a scholastic year timetable, assuming the predictability of needs for the students from year to year. There is little ability to budget and respond mid scholastic year to the new needs of any student. Challenges in finding resources for educational assistants, new technology and appropriate classroom sizes are significant.
Identifying Students with Brain Injury in The Netherlands
By far most students with a TBI have sustained a mild TBI (28), defined by a score on the Glasgow Coma Scale between 13 and 15. In our observation these children usually return to their old regular school without any notification from the hospital or from parents that the student has had a brain injury. In our experience, in Dutch regular schools the overall level of expertise in working with students with TBI is very low, and most likely this will be the situation in many other countries as well. This in fact is very alarming since schools may not be able to recognize students with deficits resulting from TBI, and thus the educational needs of these students will not be met once the student falls behind.
To improve this situation, a Dutch group developed a protocol for school teachers and school psychologists (29) with a twofold aim:
- to help them identify students with symptoms of possible TBI
- to provide them with basic information on TBI and ways to treat students with a brain injury in everyday situations in the classroom
The protocol was tested during six months in four regional pilots in The Netherlands. To form a pilot region, participation of at least one school for special education was required, together with a number of regular schools. The reason for this requirement was that special schools usually have reasonable expertise on TBI. Furthermore, they operate in a regional network of schools by which they transmit their knowledge to regular schools and function as a centre of expertise for regular schools.
In three pilots the number of students identified with deficits resulting from TBI increased significantly as a result of the use of the protocol. In two of these three pilots this number doubled, compared to average periods of six months preceding the pilot. In the third region this number increased threefold. In spite of these results there remains plenty of room for further increase of identification of students with TBI. In each of the pilot areas at most seven regular schools were involved while the total number of schools in each area was a multiple of seven. In one pilot the number of students identified with TBI did not change. We are not yet sure how this finding can be explained.
The protocol was received as a very helpful tool by teachers, school psychologists and ambulant support workers in schools, resulting in improved self reported knowledge on brain injury by these professionals. Our next step will be to implement the protocol throughout the country.
Disseminating Information to Teachers in Sweden
Teachers in Sweden appear to lack the knowledge to make adjustments to the school environment which would support children with TBI, and may encounter children who have not yet been identified as having TBI. This occurs most often for mild TBI, but also after more serious TBI (30). Based on the belief that the process of information must start in the healthcare system, the place where the TBI for most children actually are identified, a regional information initiative was started in the county of Jämtland. The surgical department at the local hospital, seeing most of the pediatric patients, 0-18 years of age, received information from the pediatric rehabilitation team about TBI consequences and how recovery can be promoted. It resulted in an increase of referrals of patients with mild TBI to the rehabilitation unit. Following this, more children and adolescents, their parents and teachers, received support in how the school reintegration of the individual child could be achieved. Suggestions to teachers are at a first level based on general knowledge of how to reintegrate students after a TBI. At the second level, interventions are also based on formal assessments of the individual patient. Although referrals to rehabilitation now are more common in the county, they still rest on the personal knowledge of the professionals. The challenge is now to formulate official healthcare routines describing which patients in the large group of mild TBI should be referred to ongoing support within the health care system, and among the rest, how general information about adjustments can reach their schools.
We have stated that school is one of the main arenas for promoting recovery and development after TBI in childhood, and that adjustments of the everyday school setting are important for academic success. General and/ore individual TBI consequences must be described to teachers, both on short and long-term basis. There is knowledge in the literature of how to reintegrate the student in school, but unfortunately this information does not reach the teachers, nor the information of a student having had a TBI. Examples are given of how to inform teachers of their students having had a TBI, and how to adjust the educational settings. In both cases, these initiatives start from groups with TBI expertise. Worldwide, there are large variations between countries concerning the nature of the populations, their healthcare and school system. Methods of informing teachers must be organized differently depending on the specific situation. However, the child with TBI is best seen within the healthcare system in each country. The responsibility of informing the teachers on the consequences of TBI, and how to cope in everyday situations in school, must lie with healthcare professionals.
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