Adolescents' lived experience of epilepsy.
Literature addressing adolescents with epilepsy often focuses on problems strictly due to the disease itself (Dunn, Austin, & Huster, 1999; Howe, Feinstein, Reiss, & Molock, 1993; Viberg, Blennow, & Polski, 1987). To improve the well-being of adolescents with epilepsy, research on coping with the problems caused by the disease is needed. After working with adolescents with epilepsy on a pediatric neurology ward, one of us (Eklund) became interested in investigating their lived experience and coping strategies. The other (Sivberg) worked with children with autistic spectrum disorders. The purpose of this study was to describe the lived experience of adolescents with epilepsy and how they cope with the disease.
The self-image of the adolescent undergoes profound modifications (Erikson, 1977). Adolescents have many thoughts about their bodies because of the physical changes associated with puberty, and many adolescents worry about not being seen as a normal person (Erikson, 1994). A seizure, like any other traumatic event occurring to the adolescent body, takes on an amazing significance. An adolescent often experiences a seizure as a form of physical suffering, which is difficult both to convey and to understand. At the same time, it is loaded with deep significance about body image (Rossi, Bonfiglio, Veggiotto, & Lanzi, 1997).
Adolescents with epilepsy report that they feel discriminated against in school (Galletti, Rinna, & Acquafondata, 1998). Even if society's view of epilepsy has improved, there is still a great need for more knowledge (Jenson & Dam, 1992). Societal attitudes can cause more pain for the adolescents than the seizure itself (Gordon & Sillanpaa, 1997).
Health-related quality of life is a broader concept than personal health status, and takes social well-being into account as well. There is no consensus about defining quality of life (Dunn et al., 1999). In this study, we defined it as the participants' general sense of social well-being. Several authors have investigated the psychodynamic problems in persons suffering from epilepsy (Hoare & Kerly, 1992; Krakow, Buhler, & Haltenhof, 1999). Adolescents with epilepsy had symptoms of depression to a greater extent than other adolescents (Dunn et al., 1999; Viberg et al., 1987). Yet, when quality of life was investigated in a group of people with epilepsy, the majority of whom had been free from seizure during the last 2 years, the reported quality of life was high (Jacoby, 1992). Similar results were reported in a study in which well-being in children with controlled epilepsy was compared with that of healthy children (Norrby, Carlsson, Beckung, & Nordholm, 1999). The results showed that the perceived well-being of the group of children with controlled epilepsy did not differ significantly from that of the age-matched control group.
Studies have reported that quality of life seems to be scored as a continuum in relation to seizure frequency (van Hout et al., 1997; Malmgren, Sullivan, Akstedt, Kullberg, & Kumlien, 1997). However, another study with adolescents showed that quality of life is connected more with the participants' experience of the epilepsy than with the objective symptoms (Galletti et al., 1998). The adolescents' attitudes toward having seizures and their satisfaction with family relationships were associated with significant depression (Dunn et al., 1999). In contrast, most of the adolescents Westbrook, Bauman, and Shinnar (1992) investigated did not appear to feel stigmatized by their epilepsy. A majority (69%) said that having epilepsy did not affect whether they were invited to go out on dates or their willingness to attend a party, and 89% believed that people with epilepsy could have sexual relationships just like people without epilepsy. But adolescents with epilepsy who felt stigmatized by their disorder were more likely to report low self-esteem than adolescents who did not feel stigmatized (Westbrook et al.).
Coping is a way of handling stress and can involve problem solving, emotional coping, or both. Lazarus (1981) developed a cognitive model of stress and coping in which the individual appraisal of the stressful situation is central. The interpretation of what is stressful depends on previous experiences. Lazarus and Folkman (1984) constructed the Ways of Coping Questionnaire with the intent of studying coping processes. They discerned eight coping dimensions: confrontation, distancing, self-control, social support, acceptance of responsibility, escape, problem solving, and reappraisal. A rigid or selective use of coping behaviors usually inhibits functional coping. Although we did not use an instrument in this study because of the small number of participants, we focused on the adolescents' use of coping behaviors.
Antonovsky's (1987) Theory of Sense of Coherence, which has been applied to adolescents with epilepsy involves three core dimensions: comprehensibility, manageability, and meaningfulness. Comprehensibility is the tendency to expect the world to be ordered, structured, and clear. Manageability involves not only expecting the demands posed by problems to be manageable but also searching out appropriate resources. Meaningfulness, which Antonovsky considered to be the most important component, is the tendency to see life as being meaningful, which can encourage an individual to confront problems. It is likely that an individual's sense of coherence can affect his or her level of coping and choice of coping strategies.
Temkin and Davis (1984) showed a strong association between daily stressful events and perceived stress levels and greater seizure frequency. People with epilepsy have consistently reported the importance of lifestyle in the precipitation of seizures; 80%-93% stated that emotional stress precipitated their seizures (Legion, 1991). Deviation from healthy routines was cited by 42%. Conversely, when people were asked when they would not have seizures, the most important factor mentioned was lack of stress. Physical activity and stimulating occupation often reduced seizures (Aquilonius & Fagius, 1997). Controlled experiments with relaxation training for people with epilepsy yielded a seizure reduction in the range of 49%-66% (Dahl, Melin, & Lund, 1987; Whitman, Dell, Legion, Eibhlyn, & Statsinger, 1990). This finding suggests that behavior patterns in general and stress in particular are important seizure-inducing factors. Alcohol also may increase risk of seizures. The interaction between alcohol and antiepileptic drugs and epilepsy is complex and hard to predict (Hedstrand, 2002). Some adolescents believed it was dangerous to combine medication with alcohol and passed one or two doses in order to drink (Dehlin, 2000).
Side effects of antiepileptic drugs, such as fatigue, anxiety, and difficulties with concentration or disturbances in behavior, affect many children (Dehlin, 2000). Taking medications regularly was a burden for people with epilepsy, regardless of their age (Galletti et al., 1998; Krakow et al., 1999).
Berg Kelly (1998) suggested it was, in a sense, healthy that older adolescents experimented with their treatment. When they tried to end the medication, some found that they coped without the medication and that they felt fine. However, for a larger group the disease was too disturbing, and they went back to the medication and were motivated to continue treatment.
Epilepsy is neither visible nor noticeable in social interactions--as long as no conspicuous seizures occur. Therefore, people with epilepsy can control whether and how to inform others about their disease, in contrast with people who have visible impairments. The circle of informed persons around the adolescent tended to be very limited (Troster, 1997). The diagnosis was generally known only in the close family setting and among a few trusted friends. People with epilepsy appeared to be very careful in selecting those whom they informed about their disease, and they strove to keep this group as small and manageable as possible.
During puberty it is important to be like one's peers and to do the same things that others of the same age are doing. Some adolescents had problems telling their friends because they were afraid of losing their position in the group (Dehlin, 2000). When Westbrook et al. (1992) investigated 64 adolescents, a majority of them (78%) said that at least some of their friends knew they had epilepsy. Voluntary disclosure appeared to be the most common way of telling others (65%). Only 19% reported that they disclosed their epilepsy because they had a seizure in public and had to explain what happened, and only 16% said that someone else usually informed about the disease. Most of them (70%) rarely or never talked to others about their epilepsy (Westbrook et al.).
The prevalence of epilepsy in children in Sweden is 5 per 1,000 children, and epilepsy is more common in males. The prognosis is often good, and in 70%-80% of the cases the epilepsy disappears during the adolescent period. About one in three children with epilepsy is mentally retarded, and every fourth child has cerebral palsy. In those cases the epilepsy was often intractable (Aquilonius & Fagius, 1997).
Epilepsy has been surrounded with prejudices and legal restrictions. As late as 1969 there was a law in Sweden that forbade people with epilepsy to marry. At this time it was also common for people with epilepsy to be institutionalized (Lindberg & Lagercrantz, 1999).
Sample and Setting
Thirteen adolescents, 13-19 years old, who had been diagnosed with epilepsy for at least 1 year and were on antiepileptic drug therapy participated in the study. Exclusion criteria were adolescents with mental retardation or cerebral palsy. Primarily generalized epilepsy was present in eight and localized epilepsy in five of the adolescents. Ten of the participants were girls. Characteristics of the study participants are shown in Table 1. Because it is not uncommon for an individual with epilepsy to have more than one type of seizure, participants were categorized according to the most frequent seizures experienced. The study was performed in southern Sweden at the pediatric department at a university hospital. Letters were sent to all adolescents who fulfilled the criteria and also had an appointment with the pediatric epilepsy nurse at the pediatric department during the first quarter of 2001. The adolescents were requested to respond with an enclosed stamped letter. This procedure was offered to 20 adolescents, 13 of whom chose to participate.
An interview manual with 12 open-ended questions was developed and reviewed by the pediatric epilepsy nurse and two pediatric nurses. The manual covered questions that caught the adolescents' lived experiences of epilepsy; how they coped with different leisure activities, their sleep rhythm, alcohol use, school work, and medication; and informing others about the disease. Some examples of questions included, "What is it like to have epilepsy?" "Are you able to do what you want?" "What may happen during a seizure?" Semistructured interviews (Polit & Hungler, 1999) were conducted from September to November 2001 and tape-recorded. Two pilot interviews were performed to increase validity and reliability. Both adolescents who participated in these were informed of the purpose of the test interviews, and they were encouraged to give their thoughts about the content and setting of the interview. The interview manual did not change after the pilot interviews. Each interview lasted 30-60 minutes. The interviews were performed in the home of the adolescent in seven cases and at the hospital in six cases. The adolescents chose the location. The whole text of each recording was transcribed verbatim and contained not only the interviewees' statements but also laughter and pauses, among other things.
The strength of a qualitative approach is that it often generates discoveries in few but well-penetrated cases (Kvale, 1997). Because the purpose of this study was to describe lived experience of epilepsy in adolescents and their coping with the disease, a qualitative approach was preferred (Dahlberg, 1997) to produce a detailed and systematic recording of the themes and issues addressed in the interviews and to link them within a reasonably exhaustive category system with content analysis (Burnard, 1996). In manifest content analysis the researcher looks for words, phrases, descriptions, and terms in the transcript that are important to the context (Field & Morse, 1998). Latent content analysis means that each passage is reviewed within the context of the entire text to identify the major intents and significant meanings (Woods & Cantanzaro, 1988). In this study, we used both latent and manifest content analyses, because they complemented each other. Latent content analysis demands the preunderstanding of the researcher. Eklund's preunderstanding was related to having conducted the interviews and having 3 years' experience working as a registered nurse with adolescents with epilepsy on a pediatric neurology ward. She is also engaged in the pediatric department's cross-professional network with the aim of improving the care of adolescents at the hospital. Sivberg has experience in the field of epilepsy connected to children with autistic spectrum disorders.
Stages of Analysis
Transcripts were analyzed according to the 14 stages described in Burnard (1991).
Stages 1-3. Notes were made after each interview about the topics talked about in the interview. Transcripts were read through several times and notes made, throughout the reading, on general themes. Headings were written down to describe all aspects of the content. This stage is known as "open coding" and is described in Table 2.
Stages 4-5. The list of headings is surveyed and grouped together under higher order categories. The texts were read through several times to get a sense of the whole and to apprehend essential features of the texts. The major intents and the significant meanings were interpreted.
Stage 6. Two colleagues with more than 10 years of experience working as pediatric nurses with adolescents with epilepsy were invited to generate category systems from two interview transcripts, independently and without seeing the researchers' list. The codes immediately converged on the three lists. The lists of headings and categories had to be discussed before final agreement was reached. The model (Fig 1) was developed during those discussions. The aim of this stage was to attempt to enhance the validity of the categorizing method and to guard against researcher bias.
[FIGURE 1 OMITTED]
Stages 7-10. Transcripts were reread alongside the final agreed upon list of categories and headings to establish the degree to which the categories cover all aspects of the interviews.
Stage 11. Two respondents were asked to check the appropriateness of the category system by listening to their own transcripts. Eklund asked, "Does this quotation fit into this category?" Both respondents accepted the category system, and they said, "This is exactly the way it is."
Stages 12-14. During the write-up process we referred to the original tape recordings and to the "complete" transcripts of the interviews. In this way, it was possible to stay closer to original meanings and contexts.
Prospective participants were sent letters with information about the purpose of the study, and the adolescents were asked to give their consent to participate in an interview. For the adolescents younger than 18 years the approval of the parents was also needed (Beauchamp & Childress, 2001). No medical records were used. The study was approved by the Research Ethics Committee of the medical faculty, Lund University (LU 311-01).
The adolescents described strains due to the epilepsy and strategies to cope with those strains. The lived experiences of strains influenced the coping strategies and vice versa.
Experience of Strains
All the respondents described strains that they believed to be linked with their epilepsy. The strains were seizures, limitation of leisure activity, side effects of medication, and feelings of being different.
Though most of the adolescents were sad when they learned of the diagnosis, some of them were relieved to have a label on what they had experienced. Two girls with absence seizures experienced seizures 1-3 years before they were diagnosed, and said they wished that they had been diagnosed earlier.
They told me not to daydream. I didn't know what they had talked about, it was terrible...I was afraid of making a fool of myself, you know, it must look stupid. I almost thought it was embarrassing because I didn't remember anything of what they talked about. --Interview 4, female 17 years The adolescents vividly expressed their seizure experiences, though several adolescents said seizures were hard to describe to those who did not have epilepsy. I get absolutely stiff, it turns into dark, and I can't breathe. --Interview 2, female 15 years I was talking and suddenly my arms started to shake and I fell off the chair on the floor. It turned dark and I don't remember anything more until I woke up at the hospital. It was horrible. --Interview 13, male 14 years
The adolescents had to deal with several difficult situations linked with seizures. They described anxiety about experiencing seizures in the future, about embarrassing themselves during seizure, getting hurt during seizure, and losing control of the body.
I disgrace myself during the seizures. That is awkward. Throwing things around, not being conscious about it, and saying strange things. It's no fun to have fits among others. --Interview 8, female, 18 years
After a generalized seizure, the respondents described an enormous tiredness, muscular pain, and headache. They may have saliva running, bitten their tongue, and hurt their body in a fall. After absence seizures it was often difficult to concentrate and understand what was going on. It was described as a bad and strange feeling of not knowing what had happened.
All the adolescents knew that there was a chance that the epilepsy might disappear in adolescence, and all of them wished this would happen. Some of them had already learned that the epilepsy had not disappeared, which was very disappointing.
Side Effects of Medication
The adolescents were aware of the good effects of the antiepileptic drugs. Most of them found it important to take the medication regularly, because they knew it decreased the risk of seizures. However, several adolescents described side effects from the medications, such as tiredness, a sleeping disorder, concentration difficulties, and memory impairment. A girl said that it was as if she had been asleep during all her primary school years. But sometimes it was not clear whether the symptoms were caused by the epilepsy or by the medication.
Some adolescents had the feeling that they just had to accept the side effects, and that they could not do anything about it.
Sometimes I sleep a lot and then I'm too tired to do anything. It is especially at school I sometimes feel tired, ! would like to go home to bed. But I go on working. I can't do anyth46ing else. --Interview 5, male, 13 years
Both appetite change and weight gain were described. The adolescents also expressed having a problem regulating the dose of the antiepileptic drugs during adolescence.
I got one antiepileptic drug the first 1 1/2 years. But it had too many side effects, you get very hungry, and I gained 28 pounds. It was very hard. Then we changed to another one a year ago. When I started with this one, once at work, everything started to turn around and my eyes were bloodshot and everything turned strange and I have never felt it like that before. And we went to the hospital and another doctor decreased it to the half of the dose, and it disappeared. The dose had been too high. --Interview 7, female, 17 years
Other respondents reported hair loss, breathlessness, visual disorder, and dizziness. One female wondered about fertility in relation to the medication and another wondered whether her late menarche had anything to do with the medication.
Limitation of Leisure Activities
All adolescents described limitations of leisure activity. They talked about the need to take care of themselves (e.g., taking their medication regularly, maintaining regular sleeping habits and meals, and not being alone in situations that may be risky). They also described frustration about not being able to do things their peers do, such as driving a moped or obtaining a driver's license.
One girl claimed that she was never allowed to be alone, though most of the adolescents reported special events, such as swimming, when they chose not to be alone because of the epilepsy. Several adolescents reported that they more commonly had seizures when they drank alcohol or when they were exposed to flashing lights, such as at a disco or in front of the television or the computer. Some of them refrained from going to discos or drinking alcohol, but none of them ceased watching television or working with the computer.
The adolescents reported limitation of special activities that affected them, for example, avoiding swimming competitions, bathing alone, riding on horseback, cycling without a helmet, or going skiing. Some of them also reported that they are not allowed to stay outdoors as long as their friends.
I am not allowed to go out by myself, not even with friends, Mum wants to come with us. And I am not allowed to bike without a helmet so that I won't fall in the middle of the street. --Interview 2, female, 15 years I think of the driving license most of all. It will take a long time before I'll get my driving license. And I'm not allowed to have driving practice like everybody else. But I go with my dad to car races. I do the repair work on the car. --Interview 10, male, 18 years
Feelings of Being Different
Though most adolescents wanted to be seen like any other teenager, all expressed feelings of being different. Some adolescents thought they would have made friends more easily if they did not have epilepsy. Several of them pondered the hereditary nature of epilepsy. Feelings of injustice about having contracted epilepsy were common. There were also adolescents who felt discriminated against at school because they thought the teachers were afraid of the seizures.
And if you had been away from school, ill or something like that, all the teachers ask, "Has it to do with your epilepsy?" I have to tell them it's all right. It is as if they became scared. They don't have to be. It is as if they didn't get enough information about it. I suppose it would be easier if they had more information, the school nurse could inform them. --Interview 4, female, 17 years
Several interviewees expressed hope that the epilepsy would disappear. Some had been informed that the epilepsy would not disappear, invoking a great strain on them.
Several adolescents expressed how difficult it was to tell their schoolmates and teachers about their epilepsy. Several respondents also said that one reason for the experience of being different was the general lack of knowledge about epilepsy in society. The adolescents reported anxiety about having seizures at school, because there was a risk of embarrassing oneself.
Taking medication may also be a sign of being different, according to some adolescents. It was a burden to take the medication for a whole lifetime and also a burden to be forced to take care of oneself and to think about one's health more than other peers of the same age do. Fear of future seizures caused sleeping disturbances and anxiety for some respondents. One female did not tell her mother when she got the seizures, because she found it embarrassing, and another girl thought she was stupid before she understood it was absence seizures.
Some of the respondents had thoughts about what they would have been like without the epilepsy.
I think it is more difficult for those who have diseases to make friends, they feel more alone and as invisible persons. --Interview 2, female, 15 years The son of a friend of my father has epilepsy. But the boy doesn't seem to have any seizures. I think that's unfair. He doesn't have seizures, but I have. He can never understand my situation. He seems to live a normal life. --Interview 12, female, 15 years
All the respondents used strategies to cope with the strains. The strategies described were about finding support, feelings of control, and experimenting.
The largest amount of interview data was about support, including emotional and practical support from parents, siblings, teachers, health professionals, other adults, but, in particular, peers. The adolescents had different strategies for getting help from the people around them. The adolescents spent most of the time at school, where people knew of their epilepsy.
There were several ways in which other people found out about the epilepsy: through voluntary disclosure, by witnessing a seizure, or by someone else informing them about it (e.g., mother, teacher, school nurse, pediatric epilepsy nurse). Besides the diagnosis, information was given about what to do in case of a seizure. The adolescents wanted people around them to stay during a seizure and to give shelter. One boy wanted someone to call for an ambulance immediately. All the adolescents knew that it was not recommended to put anything in the mouth during a seizure. It gave them a sense of relief to know that most of the people around them had cell phones. Only one participant wore the symbol of epilepsy, the burning light.
My mother always wanted to keep it in the family. She didn't want the school to know. But to me it wasn't hard. I think it's better people know. So I told my teacher at school. --Interview 6, female, 19 years I talked to my friends and tried to make them understand. But it is hard when you don't know what to say. It is hard to explain. But they were always there, in some way. They tried to understand. They listened. --Interview 7, female, 17 years Grandmother visits us almost every day. But she hardly ever has seizures. But we talk about it a lot. She is the only one who knows how it feels. She and I understand each other, because we have the same experiences. --Interview 8, female, 18 years
Being in Control
A feeling of being in control was important for reducing anxiety. The adolescents had sufficient knowledge of the importance of taking medication regularly and sleeping enough. Several adolescents also experienced a link between seizure frequency and stress and diet. Some adolescents actively searched for information and wrote papers at school about epilepsy. These activities seemed to increase their self-confidence because they spoke proudly about it. Most of the adolescents had little or no knowledge of epilepsy when they received the diagnosis, but none of them wished that they had known earlier. A positive attitude strengthened the feelings of control, such as, "I'm like everybody else. I take my epilepsy medication while others take aspirins."
I won't get seizures when I'm active. --Interview 10, male, 18 years
Some adolescents discovered new things, which they would not have done without the epilepsy; this gives a feeling of meaning.
I have learned not to judge people too fast, my teachers for example .... I've got such a perspective about what is important in life. --Interview 3, female, 17 years
Routines helped to maintain a feeling of control, such as installing an alarm on the cell phone as a reminder to take the medication.
I take my medication without thinking. That has been a habit. ! carry it with me in my daily life. --Interview 7, female, 17 years
Relating to others who may have more severe diseases also makes the feeling of control stronger.
I have the bigger seizures once a month. I have four or five smaller ones every day. People think that is a lot, but I think that it's medium. Sometimes I have a lot and sometimes I have a few. I think it's quite a little, but the health professionals think it's quite a lot. --Interview 12, female, 15 years
A feeling of having possibilities of influencing the situation was also important.
I have changed doctors now. We didn't get on very well, I told my mother. My mother is a nurse, and he only talked to her and used hospital language, and I sat there and didn't understand a thing. --Interview 7,female, 17 years I'm often tired at school. I try to lean against the wall. I tell the teacher and ask if I can bring the school work home with me. --Interview 13, male, 14 years
The adolescents described how they skipped medication, drank alcohol, or slept or ate too little. They experienced having too much stress and of being at a disco with flashing lights and traveling with friends. All the boys and some of the girls said they knew that playing with the computer too many hours may cause them seizures, but they still wanted to play. By testing, they learned the effects. The results differed. Adolescents who got difficult seizures after skipping medication said that they handled the pills perfectly now. Most of the older teenagers said that they drank alcohol, but they had learned to drink moderately and to take the medication as usual. Some had experienced seizures linked to alcohol.
I drink like everybody else .... I try to sleep quite a lot. But this weekend I had a friend visiting, and I have slept 4 hours every night, but I try to compensate for it and sleep a lot now instead. --Interview 6, female, 19 years I couldn't watch television or play games on the PC too long. I knew that ! would get seizures. But I did it anyway. --Interview 10, male, 18 years I hadn't been taking my medication for a while. My parents were away and they used to remind me. I forgot to take it for 1 1/2 days. And I didn't sleep much, and I didn't eat well. I'd been out the night before. In the morning I got an epileptic seizure. I was completely out and shaky. It was a major seizure. It felt as if it was my own fault. If I had taken good care of myself, it wouldn't have happened. Now I'm very careful. --Interview 11, female, 18 years
Relationship Between Strains and Coping
The lived experiences of strains influenced the coping strategies and vice versa. The coping strategies influenced each other as well, as shown in Fig 1. With great experiences of strains, the feeling of control decreased. The adolescents who reported a low feeling of control also said that they wished for more support. Adolescents who frequently talked about anxiety and shame about their seizures also said that they wished they had more friends. In some cases adolescents were exposed to harassment. For those adolescents adults were very important. They mentioned parents, teachers, other significant adults, and health professionals. The pediatric epilepsy nurse was often mentioned, not only as a direct support to the adolescents, but also as informative support to the teachers. The adolescents who said they felt that they had good support from the people around them also indicated a high feeling of control. They had peers with whom they felt confident, but they also experienced support from adults.
The adolescents who experimented with their coping strategies often had a feeling of control. At an appropriate dose, their experimenting with coping strengthened the feeling of control, because the adolescents actively investigated how they were influenced by the different coping behaviors.
Adolescents reported how they were shocked and afraid when they discovered what happened when they skipped medication or drank alcohol, but they also reported they had learned something important from the situation. But if the experimenting went too far, the feeling of control was lost, and the strains of epilepsy they experienced became severe.
Experimenting was also connected with support. The most important support came from parents and friends. If parents had exercised most of the control of the epilepsy treatment during childhood, it was natural that this responsibility was transferred during the adolescent period. To understand what this new responsibility for themselves meant, they experimented. It was also a way of separating from their parents.
To be accepted by a group of friends was important, as was participating in the kinds of activities in which their peers engage. This also led to experimenting behaviors, such as drinking alcohol or staying out late.
Those adolescents who had sufficient support from friends and adults, and who had experimented with the treatment and learned from the consequences, tended to have the fewest experiences of strains. They experienced a high feeling of control. They had accepted that in some situations they had to adapt to the epilepsy, and they felt like any other teenager. They had the ability to relate their own situation to that of others, and to say to themselves that it could have been worse. The frequency and type of seizure were often, but not always, important. Infrequent and minor seizures invoked fewer experiences of strains than frequent, major seizures.
Though epilepsy is more common in males (Aquilonius & Fagius, 1997), in this study only three of the 13 participants were male. However, this was the case in the included group, because only four of the 20 adolescents who had contact with the pediatric epilepsy nurse during the first quarter of 2001 were male. Of the seven adolescents who did not participate, five were 17-18 years old, one was 12, and one was 14. They did not give a reason why but one female wrote that she was going abroad for 1 year and therefore could not participate and another female could not participate for family reasons. Reasons for the other five not participating may have been personal. It may be asked whether the 13 participants were representative of adolescents with epilepsy and whether the transferability (Guba, 1981) of the result was limited by this fact. Still, the participants gave a rich variety of experiences of epilepsy. Talking about the lived experiences of epilepsy may be a coping strategy in itself.
Sexuality is a main issue in adolescence. However, this issue was not included in the interview manual, because the interview setting offered only one appointment. None of the adolescents spontaneously spoke about sexuality. Also, none of the six adolescents with generalized seizures mentioned experiences of getting medication rectally or wetting themselves during seizures, which may be especially harmful in adolescence; this experience may be considered too embarrassing to speak about.
Galletti et al. (1998) found that Italian adolescents with epilepsy experienced discrimination at school. In this study, adolescents thought that teachers should be more understanding and that the school should be better adjusted to them, providing, for example, a relaxing room. The findings also correspond to those of earlier studies about negative societal attitudes and the need for extended knowledge in society (Gordon & Sillanpaa, 1997; Jensen & Dam, 1992).
The findings of this study correspond with those in the literature about seizure frequencies and lifestyles (Aquilonius & Fagius, 1997; Legion, 1991; Temkin & Davis, 1984). The majority of the adolescents in this study were aware of the link between seizure on one hand and stress, physical activity, alcohol, sleep, and diet on the other hand. For further investigation it would be of interest to examine the effect of relaxation training (Dahl et al., 1987; Whitman et al., 1990) in adolescents.
Experimenting behavior may be healthy according to both Berg Kelly (1998)and this study. Berg Kelly wrote that someone who has not experimented with the medical treatment has not fully understood the treatment.
Most participants experienced a concordance between the severity of the seizures and their well-being. This finding was also the case in the studies of van Hout et al. (1997) and Malmgren et al. (1997). Surprisingly some participants did not have this experience. Despite the severity of their seizures, they had a fairly high sense of well-being because of their attitudes to the disease. These attitudes included, "My situation is better than many others and I get support from my friends." This kind of reappraisal was also found in the study of Galletti et al. (1998).
The findings of Troster (1997) that adolescents with epilepsy strove to keep the circle of informed persons small and manageable correspond quite well to the findings in this study, but the adolescents here had different strategies to inform others about the epilepsy. Most of them told their closest friends, but those who suspected that the whole class would know anyway because of frequent seizures often informed their classmates. Voluntary disclosure was most common both here and in Westbrook's study (1992).
The eight coping dimensions mentioned by Lazarus and Folkman (1984) were identified in the findings. The most frequently mentioned coping strategy was finding support, which corresponds well with Lazarus and Folkman's dimension of social support.
The dimensions of confrontation, distancing, problem solving, and escape correspond with experimenting in the findings here. To confront the disease means to challenge it and to learn the consequences of juggling the treatment. Problem solving is, for example, how to inform others of the epilepsy. Distancing is a mental strategy of pretending as if one does not have epilepsy, and escape may be to drink alcohol and forget the disease.
Finally, self-control, acceptance of responsibility, and reappraisal correspond with feelings of being in control. Self-control is a set of functional routines, such as how to medicate. Accepting responsibility is taking care of oneself (e.g., eating and sleeping regularly). Reappraisal means relating oneself to others and understanding that others may have a worse situation, and that though the situation is difficult, one has the possibility to cope with it.
All the adolescents said the experience of being like anyone else and being seen as a normal person was important, though all of them also described feelings of being different. They spoke a lot about, on the one hand, having a disease that demanded restrictions and, on the other hand, having the feeling of invulnerability, which is common in adolescence. The adolescents tried to find meaningfulness corresponding to the Theory of Sense of Coherence (Antonovsky, 1987). The adolescents strove to make their situation comprehensible and manageable by talking about it. This means that they have a great need for social support, especially from their peers, but also from parents, teachers, and health professionals. Some adolescents had found a meaning in the experience of epilepsy, because they had gained valuable insights and found themselves more mature than peers of the same age.
This sample was too small to allow an empirical examination of the effect of different types of coping strategies on self-esteem. However, this would be an interesting task for a future investigation. Living with epilepsy means living with risks. Seizures are hard to predict, and even if medication and lifestyle influence seizure frequency, the risk of having a seizure is still present. Therefore, more research about functional coping is needed to give relief to adolescents with epilepsy.
Implications for Practice
Adolescents who had sufficient support from friends and adults tended to experience less strain. This indicates that support from health professionals and teachers is very important to increasing the adolescent's feeling of control. In this case, the pediatric epilepsy nurse and the school nurse are very important. The pediatric epilepsy nurse should make contact with the school and inform teachers and classmates about epilepsy. Another recommendation is to arrange camps at which adolescents with epilepsy have the chance to meet and learn from one another; this would lessen the feeling of being different.
All the adolescents described strains due to the epilepsy, and all had developed strategies to cope with the strains. The strains were about having seizures, limiting leisure activity, experiencing side effects of medication, and feeling different. The coping strategies described were finding support, feeling in control, and experimenting. The adolescents gave proof of great creativeness and inner strength in the way they met those difficult situations.
Table 1. Characteristics of Study Participants Absence Generalized Seizures Seizures Characteristic (n = 5) (n = 8) Gender Female 4 6 Male 1 2 Duration of epilepsy 1-5 years 2 5 6-10 years 1 1 > 10 years 2 2 Seizure frequency Frequent (several per month) 2 1 Moderate (several per year) 0 4 Infrequent ([is less than or equal to] 2 per year) 3 3 Table 2. Open Coding Extract from Interview 3 Codes All of those seizures I had during my Didn't dare to leave the period, so next month during my period I house didn't dare to leave the house. But I felt such a relief when my period was over and I hadn't had any seizures. Now I have it under control. If I eat Knowledge about seizure properly and sleep and don't rush, control and lifestyle I'll be spared from seizures. But then I was to go on vacation with my Worries about spoiling friends last summer, and I was worried a trip with friends and thought that I would spoil the trip. But they said, of course, you should Friends encourage me come with us. to join them I was afraid that I couldn't be with them; Worries about not being I had to sleep a lot and not drink, able to be together with friends But I rested a lot in the daytime, and Sleeping in the daytime went out with the others at night, and instead of at night that went well. Extract from Interview 3 Headings All of those seizures I had during my Limitation of activity period, so next month during my period I didn't dare to leave the house. But I felt such a relief when my period was over and I hadn't had any seizures. Now I have it under control. If I eat Feeling of control properly and sleep and don't rush, I'll be spared from seizures. But then I was to go on vacation with my Feeling of being different friends last summer, and I was worried and thought that I would spoil the trip. But they said, of course, you should Support come with us. I was afraid that I couldn't be with them; Feeling of being different I had to sleep a lot and not drink, But I rested a lot in the daytime, and Experimenting went out with the others at night, and that went well.
We thank Anita Mandahl, RN, Birgitta Qvarnstrom, RN, and Eva Dehlin, RN, pediatric epilepsy nurse, for their comments on this article. This project was supported by grants from Sodra Sveriges Sjukskoterskehem.
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Questions or comments about this article may be directed to: Pernilla Garmy Eklund, MPH RN, by phone at 46 46 178062 or by e-mail at Pernilla.Garmy@lund.se. She is a registered nurse in the department of pediatrics, neurology section, at Lund University Hospital, Lund, Sweden.
Bengt Sivberg, PhD, is an associate professor in the department of nursing at Lund University.
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|Title Annotation:||neuroscience nursing research; includes statistical tables|
|Author:||Eklund, Pernilla Garmy; Sivberg, Bengt|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Feb 1, 2003|
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