Traumatic brain injury (TBI) is one of the most common causes of acquired disability in children and adolescents and has resulted in an increasing number of publications in recent years (Ponsford 1995). Difficulties in communication (Lezak 1995, McDonald 2000, Turkstra, McDonald & DePompei 2001) and other cognitive functions such as attention, memory, learning (Chan 2000, Finset & Krogstad 2002, Lezak 1995, Ponsford 1995), executive functions (Hart, Whyte, Kim & Vaccaro 2005, Wood & McMillan 2001) and emotional functioning (Lezak 1995), have been identified as common in TBI. These are often long-term effects of serious brain injuries with fewer neurological after-effects (Bruke, Wesolowski, Buyer & Zawlocki 1990). It is common for adolescents with TBI to need some kind of special educational support as a part of the recovery process (Ewing-Cobbs, Fletcher, Levin, Iovino & Miner 1998, Falk, Cederfjell, Wendt & Klang 2006, Hansen 1994, Miller & Donders 2003, Savage, Depompei, Tyler & Lash 2005, Sharp, Bye, Llewellyn & Cusick 2006, Taylor, Wade, Stancin, Yeates, Drotar & Montpetite 2003). Many of those who have TBI experience long-lasting difficulties which create barriers for their ability to fulfil different social roles, be independent and cope with the demands of life (Wood & McMillan 2001). Previous research suggests that coping skills are crucial for positive development in young people (Thuen & Bru 2004). Finset and Krogstad (2002), Tyler and Mira (1999), and Sharp et al. (2006) emphasise that there is still a need for empirical research on children and adolescents with TBI, despite the fact that this is an important goal for post-acquired brain injury rehabilitation.
According to Myklebust (2007) there are many studies that follow groups of special needs children during their education. However, if searching for empirical research concerning more than two of the following key words: “coping; adolescents; school situation; acquired brain injury/traumatic brain injury”, the resulting list of literature becomes more limited. When discussing the school situation for adolescents with TBI, it can also be useful to look at results from research on adolescents in similar groups, even though the diagnoses are different. Examples of research found relevant to this present study include groups of schoolchildren with congenital physical difficulties (Grue 2001, Jemtå, Dahl, Nordahl & Fugl-Meyer 2007), chronic illness or physical disability (Lightfoot, Wright & Sloper 1999), as well as school children who have recovered from cancer (Tysnes 1997).
Many of the studies on TBI have concentrated on parents whose children have suffered TBI. Bryhn and Hetland (2002) find it striking that no-one seems to have asked the children themselves how they experience the after effects of TBI. However, in 2006 Sharp et al. presented results from an interview study of eight adolescents with acquired brain injury to explore the influence of services and support required for a successful return to school. Sharp et al. Pointed out challenges that the adolescents encounteres when returning to school, but the results were less discussed in a wider theoretical frame work.
So, the aim of the present study was to examine the adolescents’ own experiences in a coping perspective, after being discharged from the rehabilitation hospital. The main research question was:
More precisely the main research question was further clarified by specific questions concerning the academic and social challenges the adolescents met in school, the kinds of coping strategies the adolescents used to deal with these challenges, the factors that were instrumental in coping as well as changes that were experienced over time.
How do adolescents with traumatic brain injury experience and cope with their school situation?
The definition of coping is central to this study. It is based on the work of Lazarus and Folkman (1984), and their process model relating to stress, adaptation and coping. Lazarus and Folkman (1984):141) define coping as “cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person”. In other words, coping comprises a range of actions and reactions to deal with the challenges of living with TBI in school.
This was a retrospective in-depth study. The population was small; it was assumed that 6–10 informants would suffice to ensure anonymity. The criteria for participating were set by an evaluation of those informants who could give the fullest and most detailed overall picture of the study's main theme. Among some of the inclusion criteria were:
- a. severe TBI, defined on the basis of the lowest post-resuscitation Glasgow Coma Scale (Teasdale & Jennett 1974) score < 9;
- b. absence of previous learning disabilities and psychiatric diagnoses;
- c. moderate to mild neuropsychological after effects and good oral communication skills when discharged from the rehabilitation hospital;
- d. a relatively good insight into their own situation and daily functioning (although these are subjective evaluations, they were conducted by an experienced team and supported by parents’ observations);
- e. for practical reasons those selected had to have received their rehabilitation treatment at the same rehabilitation hospital.
Nine adolescents who had received primary rehabilitation at a regional rehabilitation hospital were invited to participate, and six (two female and four male) of those agreed to participate. All of the participants came from the same part of Norway – two from a small village, four from a city/larger village. Age at injury was 13–16 years (M = 14.1). Time from injury until the interview took place was 1.5–6.1 years (M = 4.1). All had been discharged into a traditional school setting. Two had finished school one year previously. These two were still included as informants because they had just completed upper secondary school. In the Norwegian school system, lower secondary school is for children of 13–16 years, while students in upper secondary school are normally 16–19 years old.
The study was reviewed and approved by the Regional Committee for Medical Research. The rights of the informants were protected with regard to anonymity, confidentiality, informed consent and voluntariness. Written consent was obtained from the adolescents themselves, as well from the parents of those who were under 18 years old. A psychologist at the rehabilitation hospital was available for contact with the informants following the interview, in case they needed to talk to a professional.
Design, Data Collection and Analysis
Previously, there has been only limited research done in this field, so an explorative design was chosen for this study. Data were collected through qualitative, semi-structured interviews with adolescents. The interview guide (see Appendix) was developed using the theoretical framework of Lazarus and Folkman (1984). It contained 12 questions concerning three dimensions of the school situation: coping; academic and social aspects; and time. All informants were given questions from all three dimensions. Open-ended questions were used in order to encourage the informants to describe their experiences in their own words. Two pilot interviews were conducted in order to make adjustments to the guide. The collection and analysis of data followed Kvale's (2001) guidelines for qualitative research, which implies a phenomenological-hermeneutic approach to understanding. An understanding was sought from the experiences of the adolescents with TBI and their experiences in school. Each of the interviews was conducted in the informant's home. All the interviews were tape-recorded and then transcribed verbatim.
Kvale's (2001) guidelines for text analysis of the transcribed interview data were followed. The transcribed interviews were read and summarised in a condensed form and then coded. Four major categories were developed from a critical analysis of patterns which emerged from the data and from the research questions: general changes experienced after brain injury; academic experiences and coping; social experiences and coping; and perspectives on the future. Kvale's three levels for interpreting contexts were used to present and to gain a deeper understanding of the transcribed interview: the level of self-understanding, common sense and theoretical understanding. In this study, the level of self-understanding is represented by the presentation of the results. This level is presented in a descriptive way to allow the voice of adolescents to come through. The next two levels are the interpretation and discussion of the results. On the common-sense level, questions such as “what do these experiences tell us?” were asked. On the theoretical level, the results were interpreted in the context of previous findings and theory related to coping.
The results are presented in terms of the four major above-mentioned categories.
General Changes Experienced after Brain Injury
This category deals with the answers provided by the informants when asked to explain what happened to them. Some only had vague memories about being hospitalised; others remembered it well. One of the informants said he experienced the initial period after recovery from coma as being very confusing with big changes in his own behaviour, which also confused the classmates and friends who visited him. Other informants also experienced behavioural changes, but these were less significant. There were frequent expressions concerning loss of cognitive abilities and loss of social networks. All informants talked about compound difficulties. Some explicitly expressed the psychological difficulties caused by the head injury; others mentioned it implicitly: “Things have got better and better over the years, but I've become very handicapped in different ways. And there are many psychological changes that are very, very unpleasant”. All expressed a gradual recovery during hospitalisation and in the time afterwards. Despite recovery, the majority experienced long-lasting changes caused by the head injury. None of the informants described difficulties in reading, writing, arithmetic or making friends at school prior to injury. The majority remembered well what it was like to return to school after discharge from the hospital. A few only had vague memories but could still describe their main impressions.
Academic Experiences and Coping
Despite academic motivation, all informants described many academic challenges, particularly during the initial period. Among the challenges mentioned, the difficulty in being able to pay attention during lessons was the one most frequently expressed. One described it like this: “It went in one ear, and out the other. That is the worst thing I have ever experienced”. In large groups it was an extra challenge not to be distracted by all the other things happening in the classroom. Extended mobilisation of efforts was common, particularly early on. Learning by heart was frequently mentioned. Parental assistance was a crucial factor for success. In the beginning, homework was a difficult and troubling task with the need for rest and the wish to keep up with the rest of the class. Later schoolwork became easier, and all informants described increased motivation after experiencing that they could cope better. The majority received extra help at school such as individual assistance, an extra teacher/assistant, shorter days at school, reduction in number of subjects and reduced expectations from teachers regarding academic school performance. One of the informants only received regular extra group teaching in mathematics along with one extra hour allowed on school tests. One of the informants reported that his teachers did not seem to be sufficiently prepared when he returned to school. In attempts to help him, the informant said, the school started intervention strategies that had not been recommended, and which therefore seemed excessive and unsuitable. Those who received extra individual teacher support, continued with this over a longer period, some for several years. Even though they experienced it as beneficial and helpful, one said: “You get many questions. Why are you out of the classroom? People may think you are stupid, right?”. Some of the informants experienced one-to-one lessons as being demanding and too intense, because the lessons required them to focus even more. Being able to succeed in a particular subject seems to have a positive effect on the student's experience of coping, satisfaction in school, and on the student's self-confidence. About what they experienced as good help and support, one informant said: “I had a maths teacher who was very understanding. He said things like 'Very good, that is very good!” And he was there all the time to help me if I needed it. He made my school day positive'.
The informants described that despite experiencing progress, they had difficulty coping with the academic work, even years later. They also had to deal with the fact that a reduction over time in the number of subjects can have consequences on their further education. Almost all had approximately a full timetable at school one year after injury. High demands and expectations from the teachers were linked to participation in both individual lessons and ordinary class lessons. In contrast, low demands were experienced as the teachers were less strict in marking their homework, compared with the rest of the class, and in allowing them to stay inside during recess, while the others were required to go outside. The material gathered gave the main impression that worries about learning were most often expressed by the upper-secondary students, in particular by those taking the most academically challenging courses. There were few mentions about academic challenges related to graduating from lower secondary to upper secondary school. One reason may be that few experienced this as a problem. One of the informants, however, used a large part of the interview to describe the difficulties she encountered lack of understanding among personnel at the new school, delays in practical accommodations and teachers who forgot appointments.
Social Experiences and Coping
All the informants said that what they most looked forward to was to be with their friends again. As one said: “To be one of the guys again. Great to try to come back to a normal life”. The majority of the informants said that after the first few days and weeks of positive social experiences, followed by a longer period of varying contentment with increasing unhappiness, along with difficulties in establishing and maintaining friendships. Several had little or no contact with classmates after school and expressed feelings of loneliness. Some had experienced difficult periods with crying and disappointment about social underachievement. Some had an opportunity to inform their classes when they came back to school, others told their classmates bit by bit in a natural way. In reviewing the interview material, the impression was that information given to classmates could have been better planned. Several had to do it on the spur of the moment, as one said: “The teachers said I could tell my class what had happened to me. That was ok, that was good. But, they should have prepared me, so my mum and dad could have explained what I should talk about”.
The informants stated that several factors play a major role in how they coped with the social aspects of school. One informant stated that the reason he succeeded socially from the beginning was that he was not that severely injured. This was the same informant who, to a lesser degree, received accommodations in his academic programme. Those who experienced social difficulties mentioned changes in behaviour, such as lack of impulse control, difficulties in comprehending social cues, and difficulties in forming friendships, as the greatest barrier for inclusion. This awareness came gradually. Both those who did experience social difficulties and the one who did not mentioned extra efforts made to cope with social situations.
Some of the informants experienced helpful and supportive teachers. One, however, was exposed to systematic bullying during his last two years of lower secondary school. He said it was difficult to ask the teachers for help. After lower secondary school, the informant could not cope with any more bullying and therefore took an alternative year at a "folk high school". About that year he said: “I felt much better psychologically. I had friends, and not only enemies and difficulties. It was good”. One of those who viewed the initial period after returning to school as being difficult said that, drawing on his own experiences, insight into his own situation was a crucial factor in managing friendships. He also claimed that he was no longer able to cope with social demands, and unfortunate long-term after-effects. Most informants mentioned the long period of absence from their class as contributing to barriers to inclusion and re-establishing contacts. Concerning social challenges, the findings showed that those who had received the most individual teaching were also those who expressed the greatest degree of challenge in their relationship with their teachers. The accident and the increasingly intense relationship which developed between teacher and student also led to undesirable effects and a challenge in an already difficult situation. Some had experienced teachers who cried in sympathy in front of classmates. One informant experienced a few episodes where teachers came up with an unfortunate expression: “While the others made lots of noise in the class, she (teacher) says: ‘You have to be quiet, because (name of the informant) does not understand that much, and now he is not able to work at all’”. Another informant said she wished for a more positive attitude, which would help her maintain hope. Later in the interview she added: “Actually, I think the teachers did as much as they could. Really they need more knowledge about what a head injury is like. For in some ways my situation was pretty unique”. As an answer to what could make the situation easier, several mentioned: “On the social level, it is just important to have the teachers there, and to talk about the problems you have in school.”
There were few reports concerning social experiences of graduating from lower secondary to upper secondary school, but one of the informants said that she was not put into the same class as other friends from her lower secondary class, as she had been promised. This informant had, earlier in the interview, spoken about how difficult it is to live with the invisible injury. As good help and social support, one informant mentioned an excursion they had: “She (the teacher) saw what was difficult. Very clever, made sure I was doing OK”. At the end of the interviews the informants were asked about what they were most proud of having managed. Several said it was the general recovery, and that after a while, they managed reasonably well on an academic level. Some experienced better social relations with classmates and managed to establish a social network.
Perspectives on the Future
The informants reported several ups and downs after re-entry to school, particularly in the beginning. However, there was an impression of slow changes in a positive direction, primarily concerning academic subjects; some also told about better social relations with classmates. The informants expressed this as contributing factors to their expectation of further recovery, and a cautious optimism about the future and how it would all work out. The expressions were characterised by moderation and realism. Some of the informants who struggled believed that the injuries had marked them for the rest of their lives, and said they tried to adjust their expectation about future studies, job opportunities and social networks in the light of this. Thus, not everybody gave an impression of having considered what would be easy or difficult. Some of this could be related to age, but one informant said: “No, I haven't had many thoughts. Since discharged from hospital, I have mostly functioned as I always have”. Another one said: “I take one day at a time. I think that is the best. You never know when you will disappear from the earth's surface”. All informants talked about how important family support was in dealing with difficult situations. Similarly, it also was evident that one informant tried to cope with the situation by redefining it, by extracting meaning from an otherwise meaningless experience. Another informant said he tried to cope with the situation by putting the whole thing behind him, something he considered important in order to be able to get on with life. This participant had experienced fewer cognitive changes.
All informants reported that they were changed by the head injury. Loss of cognitive abilities gave rise to consequences connected with participation in a number of activities, with social implications often being mentioned. The informants expressed that personal coping resources and personal characteristics such as self-confidence, a go-ahead spirit, optimism and the seeking of social support were very important for coping, which is supported by earlier research (Gjærum 1998, Lazarus 1999, Lazarus & Folkman 1984). All informants mentioned parental motivation and support as the most important factor for coping, and some also mentioned certain teachers. This confirms earlier research which emphasises support from significant others in the environment as very important for enabling a person to use his/her own personal coping resources (Gjærum 1998, Jemtå et al. 2007, Lightfoot et al. 1999).
Cognitive consequences were major barriers for coping academically. These types of consequences are quite common after a head injury (Chan 2000, Finset & Krogstad 2002, Lezak 1995, Ponsford 1995), and the results of this study do not differ in this respect from other studies in the same field. This study also supports earlier reports that TBIs have special educational needs, extending beyond the first months after their injury (Ewing-Cobbs et al. 1998, Falk et al. 2006, Hansen 1994, Miller & Donders 2003, Savage et al. 2005, Sharp et al. 2006, Taylor et al. 2003). The majority were positive towards receiving individual lessons and towards having an extra teacher in the classroom. This seems to be in contrast to the study of Tysnes (1997), where the students wanted to avoid individual tutoring. In her study, there seemed to be a close connection between the fear of stigmatisation from other students, and the wish to normalise their school day. According to Myklebust (2007), the programmes where students alternate between the general education class and the special class are less effective in attaining competence. It is, however, an important pedagogical task to achieve a good balance between academic support and allowing the students to experience coping by themselves. In order to improve coping skills, it is also important that the support provided is adequate, both in type and content (Gjærum 1998, Lazarus & Folkman 1984). Some of the experiences may confirm that problems connected with the transmission of information create barriers for adjustment (Savage et al. 2005, Tyler & Mira 1999, Ylvisaker, Todis, Glang, Urbanczyk, Franklin, DePompei, Feeney, Maxwell, Pearson & Tyler 2001). These can also be a consequence of the school's actions being based on its own past experiences (Tyler & Mira 1999). The organisation of school return after brain injury needs to be carefully arranged to reflect individual needs and school requirements (Sharp et al. 2006). Bryhn and Hetland (2002) and Keefe, Moore and Duff (2006) emphasise the importance of listening to the students’ experiences in creating the best educational services. Keefe et al. (2006) see this as central aspects of having autonomy and control, something which is important for any individual.
When the first experiences of academic underachievement had gradually faded, the social challenges became more explicit and demanded more of the individual students’ attention. Because of cognitive changes, it is reasonable to assume that some adolescents with TBI return to school without adequate social skills. This is supported by findings in this study: informants mention this as a considerable barrier. Turkstra et al. (2001), McDonald (2000), and Ylvisaker, Turkstra, Coehlo, Yorkston, Kennedy, Sohlberg and Avery (2007), argue that TBI can lead to difficulties in socially appropriate behaviour such as impaired social perception and social expression. Lezak (1995) points out that many with TBI strive to utilise feedback from the surroundings. Frostad and Pijl (2007) emphasise that having age-group-appropriate social skills is an important condition for developing positive relationships with peers. Those who experienced underachievement gave the impression that this was a factor for which they were not prepared. Social isolation is a major problem following TBI (Prigatano & Gupta 2006): the interviews revealed that the majority struggled for a long period to establish friendships. Social support from peers is an important aspect for adolescents experiencing difficulties at school. So, teaching should also focus on fostering good peer relations in the class (Allodi 2000, Lightfoot et al. 2009). Inclusive education poses a major challenge to teachers’ practice (Hutzler, Zach & Gafni 2005). Lazarus and Folkman (1984) point out that difficulties experienced over a period of time tax or exceed a student's personal resources and weaken his/her expectations of coping. In her study of children and adolescents who had cancer, Tysnes (1997) found that they did not have much difficulty getting socially included after their illness. This suggests that it could be more difficult for a student with TBI to get included, which underlines the necessity of fostering a good, inclusive psychosocial environment at school. Skårbrevik (2005) suggests that more focus should be directed towards the use of educational programmes as a tool for developing social inclusion and friendships.
Gjærum (1998), Lazarus and Folkman (1984), and Sommerschild (1998) emphasise the importance of being flexible in choosing alternative courses as a personal coping resource. In an attempt to cope with their difficulties in school, the informants made considerable use of personal and socio-ecological resources. Access to these resources is important in the choice of coping strategy, according to Jemtå et al. (2007). It seems that actively involved teachers are an important socio-ecological resource, acting as a buffer in difficult situations, particularly in the early stages. Despite the indications of the increased number of stress factors in the close teacher-student contact, the individual teaching arrangements continued over a long period. Probably it would be more stressful not to receive this kind of help. Academic coping should be viewed in a context where the wish for general cognitive recovery and the re-establishment of academic and social self-awareness (Skaalvik & Skaalvik 1996) is high. Another aspect of this is whether extensive and long-term use of individual teaching creates barriers for social inclusion in the class. Probably there is no simple answer to this, because the group of TBIs is too heterogenic. One of the informants in this study did not experience much difficulty with friendship and explained this by saying he had a milder cognitive injury. This is in agreement with the findings of Tysnes (1997), where the children, despite long periods of absence, did not have much trouble settling in upon their return. The most positive aspect of the present study was that all informants mentioned something that they were proud of having managed. Positive coping experiences have a favourable effect on an individual's self-awareness. One of the informants demonstrated the connection between academic coping and the experience of social coping, something several researchers emphasise (Grue 2001, Ogden 2001, Skaalvik & Skaalvik 1996).
As the adolescents get older, not only will the developmental tasks which they meet change, but so will the social conditions under which they live (Lazarus 1999). The adolescents in this study have to various extents considered the future, but all mentioned it. Moreover, it seems that some only take one day a time. Lazarus and Folkman (1984) emphasise emotion-focused strategies such as positive thinking, getting sympathy and understanding from others. The strategy of “trying to forget the whole thing” is an important part of the coping process. At the same time, denial can be less favourable in the long run if there are alternative courses of action (Lazarus & Folkman 1984). A coping process can be hard and long-lasting for adolescents with TBI. This underlines the necessity of experiencing positive help and support in order to sustain coping efforts and is vital in maintaining a belief in one's opportunities. The informants’ perspectives on their future can be summarised in two main expectations, where one is tied to belief of recovery and the other is related to personal expectations of their ability to cope with future demands.
The adolescents in this study all experienced changes and compound difficulties as a consequence of the traumatic brain injuries. This affected their cognitive functioning and academic learning abilities, but several could also report social difficulties. The main impression is that academic difficulties can be easier to deal with than social difficulties, probably because the latter concern fundamental needs such as safety and dependence. In the initial period after the adolescents return to school, individual teaching and the teachers’ involvement are very important for coping with the school situation. However, as described, there are also challenges when there is prolonged extra support. The results show that there are several factors which contribute to academic and social coping. All the adolescents in this study talked about the future and expressed a careful optimism regarding employment and social network.
Limitations of this study
The number of informants in this study was small. The method of approach was qualitative, and the focus was on the informants’ own experiences and coping processes. It is well-known that making generalisations from studies of this kind can be problematic, which is a limitation in this study. The aim of this study was not to make generalisations about the population as a whole, as the problems concerning both head injuries and other individual and environmental factors are too compound. The aim was to shed light on the school situation of a small group of students, discovering their experiences and coping strategies. The results have provided answers to the research question regarding some of the experiences adolescents with TBI encounter when they return to school. The results have also pointed out some factors which may be considered as supportive or restraining in connection with coping.
The aim of acquiring this knowledge was to examine the adolescent's own experiences in a coping perspective, and this study points to some possible ways to improve routines regarding cooperation between the rehabilitation hospital and the local schools. This present study is based on a small number of informants, thus, the findings could indicate the necessity for further research using a larger group of subjects.