According to literature, the concept epilepsy signifies both a medical diagnosis and a social label, a status of being "epileptic" (Baker, Brooks, Buck, & Jacoby, 1999; Baker, Spector, McGrath, & Soteriou, 2005; Jacoby, 1992), but what does this mean to people living with epilepsy? As part of a study designed to explore individuals' conceptions of life with epilepsy, this article describes epilepsy patients' conceptions of epilepsy as a phenomenon, what the concept epilepsy stands for and means, and which emotions are related to identified conceptions.
Today, epilepsy care is increasingly focused on the patient's own experiences and life situation as a result of the increasing understanding of the significant impact that social and psychological factors can have on quality of life (QOL) in epilepsy and also from a long-term perspective. Patients with epilepsy may feel particularly vulnerable as epilepsy is an "invisible" condition, which relates to psychological distress, lowered self-esteem, a negative conception of self, interpersonal difficulties, and a negative attitude toward the condition (Baker et al., 1999, 2005; Bishop, 2002; Bishop & Allen, 2003; Raty, Soderfeldt, & Wilde Larsson, 2007; Raty & Wilde Larsson, 2007; Sillanpaa, Haataja, & Shinnar, 2004). Loring, Meador, and Lee (2004) found that depression and seizure worry were the most important factors affecting QOL in patients with intractable epilepsy, and Wagner et al. (1995) found that physical symptoms in epilepsy also correlate with psychological distress and well-being (Wagner et al., 1995). Suurmeijer, Reuvekamp, and Aldenkamp (2001) also found that all the variance in QOL could be explained by psychosocial variables such as psychological distress, loneliness, adjustment and coping, and stigma perception.
Schneider and Conrad (1983) pointed out that the history of epilepsy is in a sense the history of stigma, using Goffman's (1963) concept. The stigma of epilepsy refers to an attribute that is deeply discrediting and can reduce the bearer from a whole and unique person to a tainted, discounted one. According to Jacoby (1994), stigma can be either felt or enacted or both. Felt stigma concerns a sense of shame associated with being "epileptic" and the fear of meeting enacted stigma, that is, meeting discrimination. In a European sample, Baker et al. (1999) found that 51% of the patients reported that feelings of stigma related to negative feelings of life as a whole and worries in relation to the epilepsy.
In fear of enacted stigma, the coping strategy used first by most people with epilepsy is concealment (Dalrymple & Appleby, 2000; Olsson & Campenhausen, 1993; Scambler, 1994), which, however, preserves the feelings of stigma. This occurs because patients, by trying to keep the epilepsy a secret, avoid social situations and keep their distance to others. Such actions increase the risk of social isolation and being an outsider, which in turn leads to increased feelings of stigma. Another similar way of coping with the epilepsy diagnosis is denial, in which the patient conceals the epilepsy even to himself or herself. Abetz, Jacoby, Baker, and McNulty (2000) found that, despite a clinical diagnosis, patients with newly onset seizures did not regard themselves as "having epilepsy." Also, Baker et al. (2005) found denial of the condition in an adolescent sample. They suggest that denial relates to the fact that patients "do not want to know" because they fear being stigmatized.
The role of emotions such as fear and shame in relation to epilepsy has been emphasized in previous research regarding patients' experienced QOL and well-being (Raty & Gustafsson, 2006; Raty et al., 2007) using a philosophical approach (Green, 1992; Porn, 1986, 1988, 1994). From a social psychological point of view, stigma and shame are related, and shame becomes a central possibility when being stigmatized. Shame may be seen as a class name for a large family of emotions and feelings that arise through seeing oneself negatively, if even only slightly negatively, through the eyes of others or in only anticipating such a reaction (Retzinger, 1991; Scheff, 2003; Scheff & Retzinger, 1991, 1997). The definition includes many variations from social discomfort and embarrassment to humiliation. Scheff and Retzinger (1997) made a distinction between normal shame and pathological shame. Manifestations of normal shame are, on the one hand, unpleasant but are brief and a natural part of human life. Manifestations of pathological shame, on the other hand, are persistent and relentless (Scheff & Retzinger, 1997).
According to Baker et al. (2005), an increased knowledge regarding the epilepsy condition can reduce feelings of stigma. One of the reasons for perceived stigma and denial of the epilepsy is the conception people with epilepsy have of other people's attitude to the condition. Nijhof (1998) found diversity in how people with epilepsy interpreted it. In life stories, the condition was interpreted as "disease," "normality," and "abnormality," the latter formulated vaguely and ambiguously with words taken from everyday language. The choice of concepts used in the stories depended on whether the individuals spoke for themselves or if they were spokespersons for others. They referred to themselves and their lives as normal, and if abnormalizing words were used, they toned them down. However, when the informants talked about how "others" (themselves included) perceive people with epilepsy, the expressions were dominated by the attribution of abnormality. Nijhof suggested that epilepsy has no homogeneous meaning but is constructed as a heterogeneous social phenomenon.
Zhang, Luk, Arthur, and Wong (2001) argued that interpersonal understanding is the most important characteristic of good nursing performance. According to Drew (1986, 1997) and Gustafsson (2000, 2004), a holistic intersubjective approach with the patient's experiences in focus is necessary to reach confirmation, understanding, and a healing process in a nurse-patient relationship. Recent research in neurological nursing has confirmed the importance of establishing an open and supportive nurse-patient relationship to enhance patients' well-being and QOL. White, White, and Russel (2007) found that nurses can help patients with multiple sclerosis to deal with uncertainty and emotional challenges by inquiring about emotions and emotional well-being. Nurses need to encourage the family toward acceptance and openness in relation to the epilepsy not only to enhance QOL in patients with epilepsy but also to discourage fear, concealment, secrecy, isolation, and overprotection (Saburi, Mapanga, & Mapanga, 2006).
Understanding what conceptions and emotions that a particular patient relates to the phenomenon of epilepsy can help the nurse to identify underlying, less obvious aspects that can have a substantial impact on a patient's well-being.
No studies were found addressing patients' view of the meaning of epilepsy as a phenomenon. Therefore, the scope of this study was the variation in different conceptions of epilepsy as a patient-perceived phenomenon. An additional scope was to identify emotions that were related to the perceived conceptions. Epilepsy is a complex condition that contains major psychological and social components that are often interpreted vaguely and ambiguously (Nijhof, 1998). These are also closely related to the emotions related to experiences in daily life (Raty et al., 2007). Therefore, it could be assumed that emotions also are related to patients' conceptions of the epilepsy concept.
This study aimed to highlight epilepsy patients' conceptions of epilepsy as a phenomenon and emotions related to those conceptions.
Method
Phenomenography is a qualitative explorative approach used to study people's experiences of the world. It explores how people describe their experience of something or how something appears to someone (Marton & Booth, 2000). In comparison with the phenomenological method, in which focus is on finding the essence of people's experiences of a phenomenon, the focus in the phenomenographical method is to find the variation of people's conceptions of a phenomenon, that is, in what qualitative different ways the phenomenon can be perceived.
Selection of Participants and Data Collection
The participants were recruited from the neurological clinic at a county hospital or a private outpatient clinic in the area of Sweden where the study was carried out. After oral and written information had been given, 19 outpatients were asked whether they were willing to participate, and all agreed. The participants were chosen by the nurse at the clinic following instructions provided by the researchers. These instructions were based on the strategic intention of the phenomenographic methodology that is to reach variation with regard to the participants' background characteristics. Reported seizure frequency was from no seizures to over 50 during the last year. The variations regarding age, gender, living conditions and family situation, occupation, year of onset of epilepsy, type of epilepsy, and medication are presented in Table 1. The patients' conceptions of the underlying cause of their epilepsy varied. The following explanations were given: stroke, encephalitis, herpes encephalitis, traffic accident, side effects of medication, stress, brain damage (unclear reason), severe brain impact due to rapid eye movement, psychological trauma, assumed trauma in relation to assumed heart attack, and an impact due to rapid height growth as a teenager.
Face-to-face interviews were conducted by two of the authors (L.R. and B.W.-L.) from June to September 2005. An interview schedule was used with the following main and follow-up questions: "What is epilepsy?" "What are your feelings regarding epilepsy?" Then, individually adapted open-ended follow-up questions were asked including, "What do you mean?" "Can you explain?" "Can you give an example?" and "Why?"
The interviews, which were conducted in the form of conversations, were tape-recorded and transcribed verbatim by the authors. The participants chose the location of the interview, and in most cases (n = 9), it was a secluded room at the interviewer's workplace or at the town library (n = 5). Other interviews were conducted at the hospital (n = 2) or at the participants' homes (n = 3). The interviews lasted for 60-90 minutes.
Ethics
Written and verbal information was given to all potential participants concerning the voluntary nature of participation and their right to withdraw at any time without needing to provide any explanation. Informed consent was obtained from all participants prior to the study. Confidentiality was assured, which means that the reported data cannot be linked to the individual. This study was approved by the Research Ethical Committee of Karlstad University, Sweden.
Data Analysis
Step I-Analysis According to the Phenomenographic Method
The analysis was performed by the study's investigators. During each phase of the analysis (see the next paragraphs), differences in opinions were discussed between the authors until an agreement was reached. The answers were analyzed following the guidelines provided by Alexandersson (1994), who, together with Marton and Booth (2000) (referred to earlier), is a member of the research group that originally developed the phenomenographical method:
1. Get familiar with the data and gain an overall impression. First, the investigators listened to the tapes to ensure that the interviews were correctly and accurately transcribed. Thereafter, the transcribed interviews were read several times to identify statements related to the questions asked.
2. Note similarities and differences in the statements. The identified statements were compared with each other to observe similarities and differences in the ways the participants described their experiences.
3. Determine descriptive categories of conceptions. The identified statements (conceptions) were grouped on basis of interpreted similarity of meaning to obtain an overall picture of what links there might be between them. This resulted in preliminary descriptive categories.
4. Examine the underlying structure of the system of categorization. In this phase, the focus shifted from the relationship between the identified statements (conceptions) to the relationship between the descriptive categories. The latter were scrutinized to ascertain whether they were in agreement with the statements (conceptions) and to confirm the attributes of each descriptive category.
Step II-Analysis of Relationships Between Conceptions of Epilepsy and Emotions
Emotions related to epilepsy patients' conceptions of epilepsy were identified. The material was read independently by two of the investigators (L.R. and B.W.-L.) to identify patterns relating the conceptions of epilepsy to different emotions. The interpretations were compared and discussed until consensus was reached. Found relationships were thereafter described and exemplified by patient statements.
Results
Regarding the question "What is epilepsy?" the patients described the epilepsy concept in six different ways: Epilepsy is (a) an illness related to physical disturbances, (b) a condition related to physical disturbances, (c) a mental disturbance related to lack of mental capacity, (d) a handicap related to psychological and/or social aspects, (e) an identity related to being an epileptic, and (f) a punishment. These descriptive categories describe the participants' conceptions. The descriptive categories are presented with quotations illustrating the participants' conceptions, each followed by a number that indicates a specific patient. Emotions related to epilepsy as a phenomenon were confidence, happiness, hope, annoyance, shame, fear, sorrow, and guilt (Table 2).
Epilepsy as a Phenomenon
Epilepsy Is an Illness Related to Physical Disturbances
Epilepsy is synonymous with an illness that has something to do with the brain and has a medical explanation. Epilepsy means an illness in the brain that is chronic, invisible, nonmalignant, not serious, and terrible. It means that the nerve cells in the brain are unbalanced. The brain is occasionally disconnected, and one has major or minor seizures, attacks of absence, loss of consciousness, and bites one's tongue.
I think it is an illness with spasms in the brain[horizontal ellipsis]the electrical currents [power] become to strong (Patient 2)
It is an illness[horizontal ellipsis]to a child, I think I would explain it as a plus-and-minus collision in the brain, something like thunder[horizontal ellipsis]and then the body reacts[horizontal ellipsis] (Patient 12)
Epilepsy Is a Condition Related to Physical Disturbances
This category is characterized by the conception that epilepsy is not an illness but a condition in which the brain disconnects. This is a physical condition with a medical explanation. Epilepsy is synonymous with the epileptic seizures, stated as "a disturbance in the head" or that "something is not right in the brain." It means losing contact with reality or having illusion-like feelings. It has different causes.
Epilepsy is just like the sun-storms on the sun you see[horizontal ellipsis] (Patient 14)
Epilepsy is a condition[horizontal ellipsis]you know I can't say I have been ill[horizontal ellipsis] (Patient 1)
Epilepsy Is a Mental Disturbance Related to Lack of Mental Capacity
This category is distinguished by the conception that epilepsy is a mental disturbance. Conceptions found in this category were that epilepsy is synonymous with having something misplaced in the brain and having something "wrong in the head." Epilepsy further means "something disgusting," "to be queer," or "having lower mental capacity."
I feel like a "mongo," epilepsy is yucky, people that have it are dirty, like those who are disturbed[horizontal ellipsis]and mentally disturbed. (Patient 3)
That I had something wrong in the head, that was something I felt when I found out about it[horizontal ellipsis]and perhaps that is the reason why I don't want to tell people that I have it[horizontal ellipsis]If I had been born earlier, I guess I had been placed in M [the psychiatric hospital] (Patient 15)
Epilepsy Is a Handicap Related to Psychological and/or Social Aspects
In this category, epilepsy is defined as a handicap that can be explained either psychologically or socially. It is seen as an obstacle, trouble, worry, or restriction. Epilepsy is synonymous with making a fool of oneself, wanting to escape from socially painful situations. It is a social label relating to being different and to be seen as an outsider in various social contexts.
The epilepsy is a handicap, of course[horizontal ellipsis]I see the obstacles[horizontal ellipsis]and I would never mention it if I was looking for a job[horizontal ellipsis]I talked to a manager of an enterprise[horizontal ellipsis]and she said that I would never choose you because of all the trouble[horizontal ellipsis]everything with insurances and sick leave will be expensive, no doubt.[horizontal ellipsis] (Patient 15)
Epilepsy is something related to the social[horizontal ellipsis]also with the computers. I get seizures almost always when I am sitting in front of my computer[horizontal ellipsis]and it is this about the Internet[horizontal ellipsis]getting out, coming in contact with others[horizontal ellipsis]but if you have difficulties with that, then[horizontal ellipsis] (Patient 5)
Other perceive epilepsy as a handicap regarding possibilities to marry and settle down, experience pregnancy, and be a parent.
My wife did not get used to the epilepsy, she distanced herself from it all from the start[horizontal ellipsis]and there were consequences[horizontal ellipsis]divorce[horizontal ellipsis]she claimed that her worry about my medication was the reason[horizontal ellipsis] (Patient 4)
It really hurts, knowing that I will never experience pregnancy, I will never have a child of my own[horizontal ellipsis] (Patient 12)
Epilepsy Is an Identity Related to Being an Epileptic
In this category, epilepsy meant being an epileptic. The person is one with his or her epilepsy. The epilepsy is internalized within the individual; they cannot be separated. According to the answers in this category, individuals with epilepsy are a separate category of people. Furthermore, epilepsy means being abnormal.
There is nothing normal about having epilepsy[horizontal ellipsis]it is like belonging to a special people (Patient 11)
Epilepsy Is a Punishment
In this category, epilepsy is equated with a punishment for something bad you or your parents have done in the past. This occupies the thoughts of the person with epilepsy and means that the person is looking for an explanation for the punishment.
I think that I got the epilepsy due to the incident when my boyfriend died[horizontal ellipsis]He killed himself[horizontal ellipsis]I didn't follow him home the night it happened[horizontal ellipsis]and[horizontal ellipsis]I don't think that I would have it if I had[horizontal ellipsis]and[horizontal ellipsis]and then I got my epilepsy 2 weeks later[horizontal ellipsis] (Patient 18)
Emotions Related to the Conceptions of Epilepsy as a Phenomenon
Emotions Related to Epilepsy as an Illness or a Condition
Emotions related to the conceptions that epilepsy is an illness or a condition related to physical issues were confidence and happiness because the condition could be treated and it was "not dangerous." Hope was expressed related to the wish that the seizures would disappear, but at the same time, annoyance was expressed related to disappointment as the seizures kept coming back.
Well, at first I thought it was the worst, a tumor or something[horizontal ellipsis]so when I learned it was epilepsy, I thought[horizontal ellipsis]oh-h it was only that[horizontal ellipsis]and I knew that this was something I could get help and medication for[horizontal ellipsis] (Patient 1)
Emotions Related to Epilepsy as a Mental Disturbance
One emotion related to the conception that epilepsy is a mental disturbance and to lack of mental capacity was fear, which arose from the possibility of being revealed as an epileptic. The patient was consequently worried and nervous regarding participation in social events. Another emotion was shame. Shame related to the conception that having epilepsy was equal to not being entirely sane. Thus, according to the patients, one could not rightly be acknowledged as a satisfactory member of society.
I have cut my epilepsy label into small pieces and discarded it into the paper collection[horizontal ellipsis]I didn't want anyone to see it. If I would lose my wallet and somebody would see it[horizontal ellipsis]shameful, it would be shameful (Patient 3)
I don't want anyone to know that I have it[horizontal ellipsis]it is shameful[horizontal ellipsis]and I am afraid that it will come out that I am one of them[horizontal ellipsis] (Patient 3)
The shame resulted in denial of the condition:
[horizontal ellipsis]no-o I don't have epilepsy, I don't think I have it[horizontal ellipsis]I wouldn't call it seizures what I had[horizontal ellipsis]I fainted[horizontal ellipsis]To have epilepsy is to have seizures often[horizontal ellipsis]there are poor creatures you know that have it every day[horizontal ellipsis] (Patient 3)
If I had epilepsy, my God, how I would be ashamed, but I don't have it! (Patient 3)
Emotions Related to Epilepsy as a Psychological-Social Handicap
One emotion related to the conception of epilepsy as a handicap related to psychological and/or social factors was sorrow. The answers revealed that the epilepsy was a major obstacle in relation to partnership, pregnancy, and parenthood.
[horizontal ellipsis]it is not having a family I miss the most[horizontal ellipsis]During the time I was fertile, I cried many times[horizontal ellipsis]I love children, but you have to be two, you know[horizontal ellipsis]and as I don't drink, and I can't go out to a pub, disco, or restaurant[horizontal ellipsis]it is not easy to meet someone (Patient 5)
Furthermore, the answers revealed feelings of guilt related to the epilepsy and the experience causing suffering to parents and friends.
When my friend witnessed my seizure on the first day of our trip, she became so afraid that she did not dare to trust me on that it would not happen again[horizontal ellipsis]so we did not do anything in the whole week[horizontal ellipsis]and I felt that it was my fault, being an epileptic, that she did not get anything out of her vacation (Patient 18)
Feelings of lower human value and shame were also related to epilepsy as a handicap.
I am sure that they will refuse me this insurance[horizontal ellipsis]it is always like that when you have epilepsy[horizontal ellipsis]you are not worth the same as other people (Patient 16)
[horizontal ellipsis]every time after a seizure, I fear what I have done[horizontal ellipsis]if I have had a seizure in a shop, I will not return to that shop for at least several years[horizontal ellipsis]because I feel that I have made such a fool of myself[horizontal ellipsis]and there is lots of shame[horizontal ellipsis]I want to disappear, to hide, to be invisible (Patient 13)
Emotions Related to Epilepsy as an Identity
The emotion related to the conception that epilepsy is an identity was shame. The answers revealed that being an epileptic meant being ashamed of yourself as a different, "not-normal" person, as well as being ashamed of having caused suffering to parents and family just by existing and having epilepsy.
Being an epileptic is shameful, and I have caused much suffering in my family due to it[horizontal ellipsis] (Patient 13)
Emotions Related to Epilepsy as a Punishment
Emotions related to the conception that epilepsy is a punishment were sorrow and guilt.
When it was clear that it was epilepsy, I was suffering from[horizontal ellipsis]then I knew[horizontal ellipsis]I felt it was clearly a punishment you know, that I had got this[horizontal ellipsis]I understood[horizontal ellipsis]I understood why[horizontal ellipsis]I mean[horizontal ellipsis]the pain I had caused[horizontal ellipsis] (Patient 1)
Discussion
The aim of this study was to illuminate epilepsy patients' conceptions of epilepsy as a phenomenon and emotions related to those conceptions. The complexity of the concept and the comprehensive variation of the conceptions of epilepsy were demonstrated. To understand epilepsy, it is important to consider that patients' attitudes toward the label of epilepsy can affect their experiences of daily living, perceived stigma, and QOL (Raty & Gustafsson, 2006; Raty et al., 2007; Raty & Wilde Larsson, 2007).
The results reveal that most conceptions of epilepsy as a phenomenon do not emphasize epilepsy as a medical phenomenon, but as a psychological social one. This finding can be compared with the research of Nijhof (1998) who found that disease and medical designations were initially mentioned but were then of minor importance in the life stories of patients with epilepsy. The patients tended to explicitly distance themselves from a medical interpretation using an everyday language where the epilepsy related to the patient's social identity and the issue of being normal. In addition to describing epilepsy as a psychosocial concept using an everyday language, several patients in this study had constructed their own explanation to why their epilepsy had emerged. They reassured themselves that there was nothing wrong with their brain but that the epilepsy had an external cause, which indeed affected the brain but was not associated with it. Making up such explanations can be regarded as a way to establish one's "sanity." This explanation agrees with previous research in which coping strategies such as denial of the condition (Baker et al., 2005; Raty & Wilde Larsson, 2007) and other actions (Raty et al., 2007; Robinson, 1993) are used to maintain a normal appearance and a positive self-concept. Patients strive to avoid feelings of stigma and negative emotions directed toward the self (Raty & Gustafsson, 2006; Raty et al., 2007).
An unknown cause of the epilepsy could create feelings of uncertainty and insufficient control, and as experiencing control has been found to be crucial in epilepsy (Faircloth, 1998; Garmy Eklund & Sivberg, 2003; Jacoby, 1994; Raty, Hamrin, & Soderfeldt, 1999), this could be another reason for patients to produce their own answers to why they suffer from the condition. An acceptable explanation can help the patient to regain the feeling of control and maintaining self-esteem and a positive self-concept.
The results show the important and complex role emotions have in relation to the conceptions of epilepsy as a phenomenon. This was indicated in an earlier study on daily life in epilepsy (Raty et al., 2007) in which patients reported that the epilepsy had to do with shame, doubt of being normal, and having a human value.
Confirming previous research (Raty & Gustafsson, 2006; Raty et al., 2007), negative emotions dominated the participants' responses, and it was within the psychosocial areas that the patients reported the most negative feelings in relation to the epilepsy concept. The positive emotions reported were primarily related to epilepsy as a physical phenomenon.
Identified emotions and their relationship to the conceptions of epilepsy can be discussed in terms of psychological and sociological models of emotion. Beginning with the former and drawing on the writings of Lazarus (1991a, 1991b, 1991c), cognitive appraisal of meaning (such as conceptions of epilepsy) underlies and is an integral feature of emotional states. Happiness can serve as an example. Patients reported this positive emotional reaction when they perceived epilepsy as an illness or condition that can be treated, and one that is "not dangerous." Using Lazarus' (1999) framework, happiness has an underlying appraisal pattern or theme, which he summarizes as "making reasonable progress toward the realization of a goal" (p. 96). It can be assumed that this group of patients felt confident in the possibility of reaching complete seizure freedom and had a good hope of reaching the final goal-the permanent disappearance of the epilepsy.
The suggested connection between conceptions and emotions may also have therapeutic implications as emotions have been found to be closely related to health and well-being (Lazarus, 1991b; Todaro, Shen, Niaura, Spiro, & Ward, 2003), and emotional status can be seen as resources in adaption and recovery (Anderson, Moyle, & McAllister, 2002). Working with a patient's conceptions of his or her illness can contribute to a reduction of negative emotions and an improved inner well-being. The result reveals how different patients' conceptions of epilepsy can be. By addressing the unique patient's conceptions and emotions regarding epilepsy, the nurse can enable and improve his of her ability to support and help the individual patient to understand and deal with reactions, negative emotions, and feelings of stigma related to the concept of epilepsy. The nurse will often have to initiate this dialogue, as patients sometimes will not express conceptions and emotions spontaneously for different reasons. It has, for example, been indicated that patients conceal issues such as negative emotions in fear of disconfirmation from the caregiver (Raty & Gustafsson, 2002; Raty et al., 1999). Raty and Gustafsson (2002, 2006) suggested that supporting self-reflection and helping the patient to cope can make them understand their own emotions better. It has also been shown that nurses who were trained to handle and discuss emotions improved their empathetic behavior, listened, and encouraged patients to tell about their experiences (Kruijver et al., 2001).
Shame seems to be a central emotion for the understanding of having epilepsy. In this study, shame was mentioned explicitly in three out of six categories. It seemed to be the core emotion in relation to the categories of epilepsy as a mental disturbance, epilepsy as a psychological-social handicap, and epilepsy as an identity. The common denominator for the different expressions of the shame feeling associated with having epilepsy was low worth, including insecure social bonds (risk of losing friends and family). The participants felt that epilepsy was associated with stigma, and they felt misjudged and rejected by others. To avoid the risk of being excluded and stigmatized, they thought that the illness must be concealed. This finding is consistent with the results of previous studies (Raty & Gustafsson, 2002, 2006; Raty, Soderfeldt, Larsson, & Wilde Larsson, 2004).
Limitations
One obvious drawback using a qualitative research approach with a limited number of informants is the possibility of neglecting the question of individual differences. Although a lack of representativeness is a well-acknowledged characteristic of these methods, this aspect needs to be emphasized. Thus, without reducing the importance of the emotional qualities identified in this study and given the richness of human adaptation patterns to various life circumstances, it seems reasonable to assume that these emotional reaction patterns are by no means uniform.
One problem in studying emotions is the lack of definitional consensus. Studies within the field of emotional research seldom offer theoretical background or clear definitions of emotions. This could make comparisons between different studies difficult. Scheff (2007) argued that to understand and define the core of emotions it is necessary to study verbal and nonverbal indicators of emotions by verbatim recordings of discourse.
Summary
This study was designed to study epilepsy patients' conceptions of epilepsy as a phenomenon and the emotions related to those conceptions. Nineteen outpatients were interviewed. To catch the full variation of the patients' conceptions, the participants differed with regard to age, gender, living conditions, family situation, occupation, year of epilepsy onset, type of epilepsy, and antiepileptic medication. Seizure frequency varied from no seizures to over 50 during the last year. Data were analyzed according to the phenomenographical methodology.
The result shows that the informants describe the meaning of the concept of epilepsy in six different ways. Ways of describing the condition of epilepsy are as follows: Epilepsy is an illness related to physical disturbances, epilepsy is a condition related to physical disturbances, epilepsy is a mental disturbance related to lack of mental capacity, epilepsy is a handicap related to psychological and/or social aspects, epilepsy is an identity related to being an epileptic, and epilepsy is a punishment. The positive emotions confidence, happiness, and hope together with annoyance were related to the conceptions of epilepsy as an illness related to physical disturbances and epilepsy as a condition related to physical disturbances. The negative emotions shame, fear, sorrow, and guilt were related to the other four conceptions.
This study indicates that patients' conceptions of epilepsy are more often of a psychosocial than of a medical nature and that negative emotions are closely related to the psychosocial conceptions. Shame seems to be a central emotion for the understanding of epilepsy. Knowledge of the meaning of epilepsy, as perceived by patients, is important to caregivers to better understand patients' reactions to life with epilepsy and adherence to treatment and to further understand what can trigger negative experiences and feelings of stigma. However, further research is needed to better understand patients' conceptions and the relationships between conceptions and emotions in this field. Furthermore, in the light of the results of this study, it would be of interest to perform in-depth studies of the role of shame in relation to living with epilepsy.
References