Epilepsy Patients’ Conceptions of Epilepsy As a Phenomenon Lena K

Home , Annoyance

Volume 41 & Number 4 & August 2009 201 Epilepsy Patients’ Conceptions of Epilepsy as a Phenomenon Lena K. A. Ra¨ty, Gerry Larsson, Bengt Starrin, Bodil M. Wilde Larsson ABSTRACT This study addressed epilepsy patients’ conceptions of epilepsy as a phenomenon and emotions related to those conceptions. Nineteen outpatients were interviewed, and data were analyzed according to the phenomenographical methodology. Patients described epilepsy in six qualitatively 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. The emotions confidence, happiness, hope, and annoyance were related to epilepsy as an illness or a condition, whereas shame, fear, sorrow, and guilt were related to the other four categories. This study indicated that, to patients, the phenomenon of epilepsy is above all a psychosocial nature and in that dimension closely related to negative emotions.

ccording to literature, the concept epilepsy to psychological distress, lowered self-esteem, a signifies both a medical diagnosis and a social negative conception of self, interpersonal difficulties, Alabel, a status of being ‘‘epileptic’’ (Baker, and a negative attitude toward the condition (Baker Brooks, Buck, & Jacoby, 1999; Baker, Spector, et al., 1999, 2005; Bishop, 2002; Bishop & Allen, McGrath, & Soteriou, 2005; Jacoby, 1992), but what 2003; Ra¨ty, So¨derfeldt, & Wilde Larsson, 2007; does this mean to people living with epilepsy? As part Ra¨ty & Wilde Larsson, 2007; Sillanpaa, Haataja, & of a study designed to explore individuals’ conceptions Shinnar, 2004). Loring, Meador, and Lee (2004) of life with epilepsy, this article describes epilepsy found that depression and seizure worry were the patients’ conceptions of epilepsy as a phenomenon, most important factors affecting QOL in patients what the concept epilepsy stands for and means, and with intractable epilepsy, and Wagner et al. (1995) which emotions are related to identified conceptions. found that physical symptoms in epilepsy also Today, epilepsy care is increasingly focused on correlate with psychological distress and well-being the patient’s own experiences and life situation as a (Wagner et al., 1995). Suurmeijer, Reuvekamp, and result of the increasing understanding of the sig- Aldenkamp (2001) also found that all the variance in nificant impact that social and psychological factors QOL could be explained by psychosocial variables can have on quality of life (QOL) in epilepsy and such as psychological distress, loneliness, adjust- also from a long-term perspective. Patients with ment and coping, and stigma perception. epilepsy may feel particularly vulnerable as Schneider and Conrad (1983) pointed out that epilepsy is an ‘‘invisible’’ condition, which relates 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 dis- Question or comments about this article may be directed to crediting and can reduce the bearer from a whole and Lena K.A. Ra¨ty, RNT MNSc PhD, at [email protected]. She is a senior lecturer at the Faculty of Social and Life Sciences, unique person to a tainted, discounted one. Accord- Department of Nursing, Karlstad University, Karlstad, Sweden. ing to Jacoby (1994), stigma can be either felt or Gerry Larsson, Lic. Psych. PhD, is a professor at the Department enacted or both. Felt stigma concerns a sense of of Leadership and Management, Swedish National Defence shame associated with being ‘‘epileptic’’ and the fear College, Karlstad, Sweden, and at the Department of Psycho- of meeting enacted stigma, that is, meeting discrim- social Science, University of Bergen, Bergen, Norway. ination. In a European sample, Baker et al. (1999) Bengt Starrin, PhD, is a professor at the Faculty of Social and found that 51% of the patients reported that feelings Life Sciences, Department of Social Studies, Karlstad University, of stigma related to negative feelings of life as a Karlstad, Sweden, and at the Faculty of Health and Social Studies, Lillehammer University College, Lillehammer, Norway. whole and worries in relation to the epilepsy. In fear of enacted stigma, the coping strategy Bodil M. Wilde Larsson, RNT PhD, is a professor at the Faculty of Social and Life Sciences, Department of Nursing, Karlstad used first by most people with epilepsy is conceal- University, Karlstad, Sweden, and at the Department of Nursing, ment (Dalrymple & Appleby, 2000; Olsson & Hedmark University College, Elverum, Norway. Campenhausen, 1993; Scambler, 1994), which, how- Copyright B 2009 American Association of Neuroscience Nurses ever, preserves the feelings of stigma. This occurs

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. 202 Journal of Neuroscience Nursing

because patients, by trying to keep the epilepsy a expressions were dominated by the attribution of secret, avoid social situations and keep their distance abnormality. Nijhof suggested that epilepsy has no to others. Such actions increase the risk of social homogeneous meaning but is constructed as a isolation and being an outsider, which in turn leads heterogeneous social phenomenon. to increased feelings of stigma. Another similar way Zhang, Luk, Arthur, and Wong (2001) argued of coping with the epilepsy diagnosis is denial, in that interpersonal understanding is the most impor- which the patient conceals the epilepsy even to him- tant characteristic of good nursing performance. self or herself. Abetz, Jacoby, Baker, and McNulty According to Drew (1986, 1997) and Gustafsson (2000) found that, despite a clinical diagnosis, patients (2000, 2004), a holistic intersubjective approach with newly onset seizures did not regard themselves with the patient’s experiences in focus is necessary as ‘‘having epilepsy.’’ Also, Baker et al. (2005) found to reach confirmation, understanding, and a healing denial of the condition in an adolescent sample. They process in a nurseYpatient relationship. Recent suggest that denial relates to the fact that patients research in neurological nursing has confirmed the ‘‘do not want to know’’ because they fear being importance of establishing an open and supportive stigmatized. nurseYpatient relationship to enhance patients’ well- The role of emotions such as fear and shame in being and QOL. White, White, and Russel (2007) relation to epilepsy has been emphasized in previous found that nurses can help patients with multiple research regarding patients’ experienced QOL and sclerosis to deal with uncertainty and emotional well-being (Ra¨ty & Gustafsson, 2006; Ra¨ty et al., challenges by inquiring about emotions and emo- 2007) using a philosophical approach (Green, 1992; tional well-being. Nurses need to encourage the Po¨rn, 1986, 1988, 1994). From a social psychologi- family toward acceptance and openness in relation cal point of view, stigma and shame are related, and to the epilepsy not only to enhance QOL in patients shame becomes a central possibility when being with epilepsy but also to discourage fear, conceal- stigmatized. Shame may be seen as a class name for ment, secrecy, isolation, and overprotection (Saburi, a large family of emotions and feelings that arise Mapanga, & Mapanga, 2006). through seeing oneself negatively, if even only Understanding what conceptions and emotions slightly negatively, through the eyes of others or in that a particular patient relates to the phenomenon only anticipating such a reaction (Retzinger, 1991; of epilepsy can help the nurse to identify underly- Scheff, 2003; Scheff & Retzinger, 1991, 1997). The ing, less obvious aspects that can have a substantial definition includes many variations from social dis- impact on a patient’s well-being. comfort and embarrassment to humiliation. Scheff No studies were found addressing patients’ view of and Retzinger (1997) made a distinction between the meaning of epilepsy as a phenomenon. Therefore, normal shame and pathological shame. Manifestations the scope of this study was the variation in different of normal shame are, on the one hand, unpleasant but conceptions of epilepsy as a patient-perceived phe- are brief and a natural part of human life. Manifes- nomenon. An additional scope was to identify emo- tations of pathological shame, on the other hand, are tions that were related to the perceived conceptions. persistent and relentless (Scheff & Retzinger, 1997). Epilepsy is a complex condition that contains major According to Baker et al. (2005), an increased psychological and social components that are often knowledge regarding the epilepsy condition can interpreted vaguely and ambiguously (Nijhof, 1998). reduce feelings of stigma. One of the reasons for These are also closely related to the emotions related perceived stigma and denial of the epilepsy is the to experiences in daily life (Ra¨ty et al., 2007). There- conception people with epilepsy have of other peo- fore, it could be assumed that emotions also are re- ple’s attitude to the condition. Nijhof (1998) found lated to patients’ conceptions of the epilepsy concept. diversity in how people with epilepsy interpreted it. In This study aimed to highlight epilepsy patients’ life stories, the condition was interpreted as ‘‘dis- conceptions of epilepsy as a phenomenon and emo- ease,’’ ‘‘normality,’’ and ‘‘abnormality,’’ the latter tions related to those conceptions. formulated vaguely and ambiguously with words taken from everyday language. The choice of concepts used in the stories depended on whether Method the individuals spoke for themselves or if they were Phenomenography is a qualitative explorative ap- spokespersons for others. They referred to themselves proach used to study people’s experiences of the and their lives as normal, and if abnormalizing words world. It explores how people describe their experi- were used, they toned them down. However, when ence of something or how something appears to the informants talked about how ‘‘others’’ (them- someone (Marton & Booth, 2000). In comparison selves included) perceive people with epilepsy, the with the phenomenological method, in which focus

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. Volume 41 & Number 4 & August 2009 203

The interviews, which were conducted in the form Understanding what conceptions of conversations, were tape-recorded and transcribed verbatim by the authors. The participants chose the and emotions that a particular location of the interview, and in most cases (n =9),it was a secluded room at the interviewer’s workplace patient relates to the phenomenon or at the town library (n = 5). Other interviews were of epilepsy can help identify conducted at the hospital (n =2)oratthepar- ticipants’ homes (n = 3). The interviews lasted for the factors that impact a 60Y90 minutes. patient’s well being. Ethics Written and verbal information was given to all potential participants concerning the voluntary is on finding the essence of people’s experiences of nature of participation and their right to withdraw a phenomenon, the focus in the phenomenograph- at any time without needing to provide any ical method is to find the variation of people’s con- explanation. Informed consent was obtained from ceptions of a phenomenon, that is, in what qualitative all participants prior to the study. Confidentiality different ways the phenomenon can be perceived. was assured, which means that the reported data cannot be linked to the individual. This study was Selection of Participants and Data approved by the Research Ethical Committee of Collection Karlstad University, Sweden. The participants were recruited from the neurological clinic at a county hospital or a private out- Data Analysis patient clinic in the area of Sweden where the study Step IVAnalysis According to the was carried out. After oral and written information Phenomenographic Method had been given, 19 outpatients were asked whether The analysis was performed by the study’s inves- they were willing to participate, and all agreed. The tigators. During each phase of the analysis (see the participants were chosen by the nurse at the clinic next paragraphs), differences in opinions were dis- following instructions provided by the researchers. cussed between the authors until an agreement was These instructions were based on the strategic in- reached. The answers were analyzed following the tention of the phenomenographic methodology that guidelines provided by Alexandersson (1994), who, is to reach variation with regard to the participants’ together with Marton and Booth (2000) (referred to background characteristics. Reported seizure fre- earlier), is a member of the research group that origi- quency was from no seizures to over 50 during nally developed the phenomenographical method: the last year. The variations regarding age, gender, living conditions and family situation, occupation, 1. Get familiar with the data and gain an overall year of onset of epilepsy, type of epilepsy, and impression. First, the investigators listened to the medication are presented in Table 1. The patients’ tapes to ensure that the interviews were correctly conceptions of the underlying cause of their epilepsy and accurately transcribed. Thereafter, the tran- varied. The following explanations were given: scribed interviews were read several times to stroke, encephalitis, herpes encephalitis, traffic acci- identify statements related to the questions asked. dent, side effects of medication, stress, brain damage 2. Note similarities and differences in the statements. (unclear reason), severe brain impact due to rapid eye The identified statements were compared with each movement, psychological trauma, assumed trauma in other to observe similarities and differences in the relation to assumed heart attack, and an impact due to ways the participants described their experiences. rapid height growth as a teenager. 3. Determine descriptive categories of conceptions. Face-to-face interviews were conducted by two The identified statements (conceptions) were of the authors (L.R. and B.W.-L.) from June to grouped on basis of interpreted similarity of mean- September 2005. An interview schedule was used ing to obtain an overall picture of what links there with the following main and follow-up questions: might be between them. This resulted in prelimi- ‘‘What is epilepsy?’’ ‘‘What are your feelings nary descriptive categories. regarding epilepsy?’’ Then, individually adapted 4. Examine the underlying structure of the system of open-ended follow-up questions were asked includ- categorization. In this phase, the focus shifted ing, ‘‘What do you mean?’’ ‘‘Can you explain?’’ from the relationship between the identified state- ‘‘Can you give an example?’’ and ‘‘Why?’’ ments (conceptions) to the relationship between

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. 204 Journal of Neuroscience Nursing

the descriptive categories. The latter were scruti- ways: Epilepsy is (a) an illness related to physical nized to ascertain whether they were in agreement disturbances, (b) a condition related to physical with the statements (conceptions) and to confirm disturbances, (c) a mental disturbance related to lack the attributes of each descriptive category. of mental capacity, (d) a handicap related to psychological and/or social aspects, (e) an identity related Step IIVAnalysis of Relationships Between to being an epileptic, and (f) a punishment. These Conceptions of Epilepsy and Emotions descriptive categories describe the participants’ con- Emotions related to epilepsy patients’ conceptions of ceptions. The descriptive categories are presented with epilepsy were identified. The material was read in- quotations illustrating the participants’ conceptions, dependently by two of the investigators (L.R. and each followed by a number that indicates a specific B.W.-L.) to identify patterns relating the conceptions of patient. Emotions related to epilepsy as a phenomenon epilepsy to different emotions. The interpretations were were confidence, happiness, hope, annoyance, shame, compared and discussed until consensus was reached. fear, sorrow, and guilt (Table 2). Found relationships were thereafter described and exemplified by patient statements. Epilepsy as a Phenomenon Epilepsy Is an Illness Related to Physical Disturbances Results Epilepsy is synonymous with an illness that has Regarding the question ‘‘What is epilepsy?’’ the something to do with the brain and has a medical patients described the epilepsy concept in six different explanation. Epilepsy means an illness in the brain

TABLE 1. Demographic Background Reported by Patients With Epilepsy Living With Duration Partner, Alone, of Epilepsy Gender Age Parent/Children Occupation (years) Seizure Type Medical Treatment Female 50 Partner/Yes Invalid pension 2 TC Lamictal Male 44 Partner/Yes Computer systems 23 GPC Lamictal, Keppra programmer, 25% sick leave Female 28 Partner/Yes Student 1 yr TC Lamictal Male 62 Partner/Yes Invalid pension 24 TC, PC Lamictal, Keppra Female 46 Alone/No Invalid pension 33 TC, PC Lamictal, Keppra, Topimax Male 64 Partner/Yes Invalid pension 75% 7 PC Lamictal, Ergenyl Male 58 Alone/No Invalid pension 49 TC, PC Lamictal (surgery 1990) Female 20 Parent/No Student 5 PC Yes, AED unknown Female 25 Partner/Pregnant Working full-time 10 TC Unknown Female 50 Partner/Yes Student 38 TC, PC Lyrica, Iktorivil, Topimax Female 52 Partner/Yes Invalid pension 4 TC Yes, AED unknown Female 25 Partner/No 50% student, 50% work 12 TC Lamictal, Keppra Female 40 Partner/Yes Working full-time 25 PC Lamictal Male 64 Partner/Yes Invalid pension 24 TC, PC Lamictal, Tegretol Female 48 Partner/Yes Student 23 PC Lamictal, Lyrica Female 31 Partner/Yes Working full-time 2 Abscensepilepsy Lamictal Male 48 Partner/Yes Working full-time 32 TC, PC Yes, polytherapy (AED unknown) Female 21 Parents/No Working full-time 5 TC, PC Lamictal, Keppra Male 61 Alone/No Invalid pension 2 Unclear Tegretol

Note. TC = tonicYclonic seizures; GPC = generalized partial complex seizures; AED = antiepileptic drug.

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. Volume 41 & Number 4 & August 2009 205 that is chronic, invisible, nonmalignant, not serious, with having something misplaced in the brain and and terrible. It means that the nerve cells in the brain having something ‘‘wrong in the head.’’ Epilepsy are unbalanced. The brain is occasionally disconnected, further means ‘‘something disgusting,’’ ‘‘to be and one has major or minor seizures, attacks of ab- queer,’’ or ‘‘having lower mental capacity.’’ sence, loss of consciousness, and bites one’s tongue. I feel like a ‘‘mongo,’’ epilepsy is yucky, people I think it is an illness with spasms in the that have it are dirty, like those who are brainIthe electrical currents [power] become to disturbedIand mentally disturbed. (Patient 3) strong (Patient 2) That I had something wrong in the head, that was It is an illnessIto a child, I think I would something I felt when I found out about itIand explain it as a plus-and-minus collision in the perhaps that is the reason why I don’t want to tell brain, something like thunderIand then the people that I have itIIf I had been born earlier, I body reactsI (Patient 12) guess I had been placed in M [the psychiatric hospital] (Patient 15) Epilepsy Is a Condition Related to Physical Disturbances Epilepsy Is a Handicap Related to This category is characterized by the conception that Psychological and/or Social Aspects epilepsy is not an illness but a condition in which the In this category, epilepsy is defined as a handicap that brain disconnects. This is a physical condition with a can be explained either psychologically or socially. It medical explanation. Epilepsy is synonymous with is seen as an obstacle, trouble, worry, or restriction. the epileptic seizures, stated as ‘‘a disturbance in the Epilepsy is synonymous with making a fool of one- head’’ or that ‘‘something is not right in the brain.’’ It self, wanting to escape from socially painful situations. means losing contact with reality or having illusion- It is a social label relating to being different and to be like feelings. It has different causes. seen as an outsider in various social contexts.

Epilepsy is just like the sun-storms on the sun The epilepsy is a handicap, of courseII see you seeI (Patient 14) the obstaclesIand I would never mention it if I was looking for a jobII talked to a manager Epilepsy is a conditionIyou know I can’t say I of an enterpriseIand she said that I would have been illI (Patient 1) never choose you because of all the troubleI everything with insurances and sick leave will be Epilepsy Is a Mental Disturbance Related to expensive, no doubt.I (Patient 15) Lack of Mental Capacity This category is distinguished by the conception that Epilepsy is something related to the socialIalso epilepsy is a mental disturbance. Conceptions found with the computers. I get seizures almost always in this category were that epilepsy is synonymous when I am sitting in front of my computerIand

TABLE 2. Conceptions of Epilepsy as a Phenomenon in Relation to Experienced Emotions Conceptions Emotions Epilepsy is an illness related to physical disturbances and Confidence epilepsy is a condition related to physical disturbances Happiness Hope Annoyance Epilepsy is a mental disturbance related to lack of mental capacity Shame Fear Epilepsy is a handicap related to psychological and/or social aspects Sorrow Guilt Epilepsy is an identity related to being an epileptic Shame Epilepsy is a punishment Sorrow Guilt

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. 206 Journal of Neuroscience Nursing

it is this about the InternetIgetting out, coming seizures would disappear, but at the same time, in contact with othersIbut if you have annoyance was expressed related to disappointment difficulties with that, thenI (Patient 5) as the seizures kept coming back.

Other perceive epilepsy as a handicap regarding Well, at first I thought it was the worst, a tumor possibilities to marry and settle down, experience or somethingIso when I learned it was epilepsy, pregnancy, and be a parent. I thoughtIoh-h it was only thatIand I knew that this was something I could get help and My wife did not get used to the epilepsy, she medication forI (Patient 1) distanced herself from it all from the startIand there were consequencesIdivorceIshe claimed Emotions Related to Epilepsy as a Mental that her worry about my medication was the Disturbance reasonI (Patient 4) One emotion related to the conception that epilepsy is a mental disturbance and to lack of mental capac- It really hurts, knowing that I will never ity was fear, which arose from the possibility of experience pregnancy, I will never have a child being revealed as an epileptic. The patient was of my ownI (Patient 12) consequently worried and nervous regarding participation in social events. Another emotion was Epilepsy Is an Identity Related to Being shame. Shame related to the conception that hav- an Epileptic ing epilepsy was equal to not being entirely sane. In this category, epilepsy meant being an epileptic. Thus, according to the patients, one could not rightly The person is one with his or her epilepsy. The be acknowledged as a satisfactory member of society. epilepsy is internalized within the individual; they cannot be separated. According to the answers in I have cut my epilepsy label into small pieces this category, individuals with epilepsy are a and discarded it into the paper collectionII separate category of people. Furthermore, epilepsy didn’t want anyone to see it. If I would lose my means being abnormal. wallet and somebody would see itIshameful, it would be shameful (Patient 3) There is nothing normal about having epilepsyIit is like belonging to a special people I don’t want anyone to know that I have itIit is (Patient 11) shamefulIand I am afraid that it will come out that I am one of themI (Patient 3) Epilepsy Is a Punishment In this category, epilepsy is equated with a The shame resulted in denial of the condition: punishment for something bad you or your parents have done in the past. This occupies the thoughts of Ino-o I don’t have epilepsy, I don’t think I have the person with epilepsy and means that the person is itII wouldn’t call it seizures what I hadII looking for an explanation for the punishment. faintedITo have epilepsy is to have seizures oftenIthere are poor creatures you know that I think that I got the epilepsy due to the incident have it every dayI (Patient 3) when my boyfriend diedIHe killed himselfI I didn’t follow him home the night it happenedI If I had epilepsy, my God, how I would be andII don’t think that I would have it if I ashamed, but I don’t have it! (Patient 3) hadIandIand then I got my epilepsy 2 weeks laterI (Patient 18) Emotions Related to Epilepsy as a PsychologicalYSocial Handicap Emotions Related to the Conceptions of One emotion related to the conception of epilepsy Epilepsy as a Phenomenon as a handicap related to psychological and/or social Emotions Related to Epilepsy as an Illness factors was sorrow. The answers revealed that the or a Condition epilepsy was a major obstacle in relation to part- Emotions related to the conceptions that epilepsy is nership, pregnancy, and parenthood. an illness or a condition related to physical issues were confidence and happiness because the condi- Iit is not having a family I miss the mostI tion could be treated and it was ‘‘not dangerous.’’ During the time I was fertile, I cried many Hope was expressed related to the wish that the timesII love children, but you have to be two,

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. Volume 41 & Number 4 & August 2009 207

you knowIand as I don’t drink, and I can’t go and emotions related to those conceptions. The out to a pub, disco, or restaurantIit is not easy complexity of the concept and the comprehensive to meet someone (Patient 5) variation of the conceptions of epilepsy were dem- onstrated. To understand epilepsy, it is important to Furthermore, the answers revealed feelings of consider that patients’ attitudes toward the label of guilt related to the epilepsy and the experience epilepsy can affect their experiences of daily liv- causing suffering to parents and friends. ing, perceived stigma, and QOL (Ra¨ty & Gustafsson, 2006; Ra¨ty et al., 2007; Ra¨ty & Wilde Larsson, When my friend witnessed my seizure on the 2007). first day of our trip, she became so afraid that she The results reveal that most conceptions of did not dare to trust me on that it would not epilepsy as a phenomenon do not emphasize epilepsy happen againIso we did not do anything in the as a medical phenomenon, but as a psychological whole weekIand I felt that it was my fault, social one. This finding can be compared with the being an epileptic, that she did not get anything research of Nijhof (1998) who found that disease and out of her vacation (Patient 18) medical designations were initially mentioned but were then of minor importance in the life stories of Feelings of lower human value and shame were patients with epilepsy. The patients tended to also related to epilepsy as a handicap. explicitly distance themselves from a medical inter- pretation using an everyday language where the I I am sure that they will refuse me this insurance it epilepsy related to the patient’s social identity and I is always like that when you have epilepsy you the issue of being normal. In addition to describing are not worth the same as other people (Patient 16) epilepsy as a psychosocial concept using an every- I day language, several patients in this study had every time after a seizure, I fear what I have constructed their own explanation to why their doneIif I have had a seizure in a shop, I will not I epilepsy had emerged. They reassured themselves return to that shop for at least several years that there was nothing wrong with their brain but because I feel that I have made such a fool of I I that the epilepsy had an external cause, which indeed myself and there is lots of shame I want to affected the brain but was not associated with it. disappear, to hide, to be invisible (Patient 13) Making up such explanations can be regarded as a Emotions Related to Epilepsy as an Identity way to establish one’s ‘‘sanity.’’ This explanation The emotion related to the conception that epilepsy is agrees with previous research in which coping an identity was shame. The answers revealed that strategies such as denial of the condition (Baker being an epileptic meant being ashamed of yourself et al., 2005; Ra¨ty & Wilde Larsson, 2007) and other as a different, ‘‘not-normal’’ person, as well as being actions (Ra¨ty et al., 2007; Robinson, 1993) are ashamed of having caused suffering to parents and used to maintain a normal appearance and a positive family just by existing and having epilepsy. self-concept. Patients strive to avoid feelings of stigma and negative emotions directed toward the Being an epileptic is shameful, and I have self (Ra¨ty & Gustafsson, 2006; Ra¨tyetal.,2007). caused much suffering in my family due to itI An unknown cause of the epilepsy could create (Patient 13) feelings of uncertainty and insufficient control, and as experiencing control has been found to be crucial in Emotions Related to Epilepsy as a epilepsy (Faircloth, 1998; Garmy Eklund & Sivberg, Punishment 2003; Jacoby, 1994; Ra¨ty, Hamrin, & So¨derfeldt, Emotions related to the conception that epilepsy is a 1999), this could be another reason for patients to punishment were sorrow and guilt. produce their own answers to why they suffer from the condition. An acceptable explanation can help When it was clear that it was epilepsy, I was the patient to regain the feeling of control and suffering fromIthen I knewII felt it was maintaining self-esteem and a positive self-concept. clearly a punishment you know, that I had got The results show the important and complex role thisII understoodII understood whyII emotions have in relation to the conceptions of meanIthe pain I had causedI (Patient 1) epilepsy as a phenomenon. This was indicated in an earlier study on daily life in epilepsy (Ra¨ty et al., Discussion 2007) in which patients reported that the epilepsy The aim of this study was to illuminate epilepsy had to do with shame, doubt of being normal, and patients’ conceptions of epilepsy as a phenomenon having a human value.

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. 208 Journal of Neuroscience Nursing

Confirming previous research (Ra¨ty & Gustafsson, and discuss emotions improved their empathetic 2006; Ra¨ty et al., 2007), negative emotions dominated behavior, listened, and encouraged patients to tell the participants’ responses, and it was within the about their experiences (Kruijver et al., 2001). psychosocial areas that the patients reported the most Shame seems to be a central emotion for the negative feelings in relation to the epilepsy concept. understanding of having epilepsy. In this study, shame The positive emotions reported were primarily related was mentioned explicitly in three out of six categories. to epilepsy as a physical phenomenon. It seemed to be the core emotion in relation to the Identified emotions and their relationship to the categories of epilepsy as a mental disturbance, conceptions of epilepsy can be discussed in terms of epilepsy as a psychologicalYsocial handicap, and psychological and sociological models of emotion. epilepsy as an identity. The common denominator for Beginning with the former and drawing on the the different expressions of the shame feeling associ- writings of Lazarus (1991a, 1991b, 1991c), cognitive ated with having epilepsy was low worth, including appraisal of meaning (such as conceptions of epi- insecure social bonds (risk of losing friends and lepsy) underlies and is an integral feature of emo- family). The participants felt that epilepsy was tional states. Happiness can serve as an example. associated with stigma, and they felt misjudged and Patients reported this positive emotional reaction rejected by others. To avoid the risk of being excluded when they perceived epilepsy as an illness or con- and stigmatized, they thought that the illness must be dition that can be treated, and one that is ‘‘not concealed. This finding is consistent with the results of dangerous.’’ Using Lazarus’ (1999) framework, hap- previous studies (Ra¨ty & Gustafsson, 2002, 2006; piness has an underlying appraisal pattern or theme, Ra¨ty, So¨derfeldt, Larsson, & Wilde Larsson, 2004). which he summarizes as ‘‘making reasonable progress toward the realization of a goal’’ (p. 96). It can Limitations be assumed that this group of patients felt confident One obvious drawback using a qualitative research in the possibility of reaching complete seizure approach with a limited number of informants is the freedom and had a good hope of reaching the final possibility of neglecting the question of individual goalVthe permanent disappearance of the epilepsy. differences. Although a lack of representativeness is a The suggested connection between conceptions well-acknowledged characteristic of these methods, and emotions may also have therapeutic implica- this aspect needs to be emphasized. Thus, without tions as emotions have been found to be closely reducing the importance of the emotional qualities related to health and well-being (Lazarus, 1991b; identified in this study and given the richness of Todaro, Shen, Niaura, Spiro, & Ward, 2003), and human adaptation patterns to various life circum- emotional status can be seen as resources in stances, it seems reasonable to assume that these adaption and recovery (Anderson, Moyle, & emotional reaction patterns are by no means uniform. McAllister, 2002). Working with a patient’s con- One problem in studying emotions is the lack of ceptions of his or her illness can contribute to a definitional consensus. Studies within the field of reduction of negative emotions and an improved emotional research seldom offer theoretical back- inner well-being. The result reveals how different ground or clear definitions of emotions. This could patients’ conceptions of epilepsy can be. By make comparisons between different studies diffi- addressing the unique patient’s conceptions and cult. Scheff (2007) argued that to understand and emotions regarding epilepsy, the nurse can enable define the core of emotions it is necessary to study and improve his of her ability to support and help verbal and nonverbal indicators of emotions by the individual patient to understand and deal with verbatim recordings of discourse. reactions, negative emotions, and feelings of stigma related to the concept of epilepsy. The nurse will Summary often have to initiate this dialogue, as patients This study was designed to study epilepsy patients’ sometimes will not express conceptions and emo- conceptions of epilepsy as a phenomenon and the tions spontaneously for different reasons. It has, for emotions related to those conceptions. Nineteen example, been indicated that patients conceal issues outpatients were interviewed. To catch the full such as negative emotions in fear of disconfirma- variation of the patients’ conceptions, the participants tion from the caregiver (Ra¨ty & Gustafsson, 2002; differed with regard to age, gender, living conditions, Ra¨ty et al., 1999). Ra¨ty and Gustafsson (2002, family situation, occupation, year of epilepsy onset, 2006) suggested that supporting self-reflection and type of epilepsy, and antiepileptic medication. Sei- helping the patient to cope can make them zure frequency varied from no seizures to over 50 understand their own emotions better. It has also during the last year. Data were analyzed according to been shown that nurses who were trained to handle the phenomenographical methodology.

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. Volume 41 & Number 4 & August 2009 209

The result shows that the informants describe the Dalrymple, J., & Appleby, J. (2000). Cross sectional study of meaning of the concept of epilepsy in six different reporting of epileptic seizures to general practitioners. British Medical Journal, 320,94Y97. ways. Ways of describing the condition of epilepsy Drew, N. (1986). Exclusion and confirmation: A phenomenol- are as follows: Epilepsy is an illness related to physical ogy of patients’ experiences with caregivers. Journal of disturbances, epilepsy is a condition related to physical Nursing Scholarship, 18(2), 39Y43. disturbances, epilepsy is a mental disturbance related Drew, N. (1997). Expending self-awareness through explora- tion of meaningful experience. Journal of Holistic Nursing, to lack of mental capacity, epilepsy is a handicap 15(4), 406Y424. related to psychological and/or social aspects, epilepsy Faircloth, C. A. (1998). Epilepsies, identities, and difference: is an identity related to being an epileptic, and epilepsy Horizons of meaning for individuals with an epilepsy. is a punishment. The positive emotions confidence, Qualitative Health Research, 8(5), 602Y617. Garmy Eklund, P., & Sivberg, B. (2003). Adolescents’ lived happiness, and hope together with annoyance were experience of epilepsy. Journal of Neuroscience Nursing, related to the conceptions of epilepsy as an illness 35(1), 40Y49. related to physical disturbances and epilepsy as a Goffman, E. (1963). Stigma: Notes on the management of spoiled condition related to physical disturbances. The nega- identity. Harmondsworth, United Kingdom: Penguin Books. Green, O. H. (1992). The emotions. Dordrecht, Netherlands: tive emotions shame, fear, sorrow, and guilt were Kluwer Academic Publishers. related to the other four conceptions. Gustafsson, B. (2000). The SAUC model of confirming This study indicates that patients’ conceptions of nursing. Journal of Nursing Theory, 9(1), 6Y21. epilepsy are more often of a psychosocial than of a Gustafsson, B. (2004). Confirming nursing. The SAUC model for medical nature and that negative emotions are closely health and community care. Lund, Sweden: Studentlitteratur. Jacoby, A. (1992). Epilepsy and the quality of every day related to the psychosocial conceptions. Shame lifeVfindings from a study of people with well-controlled seems to be a central emotion for the understanding epilepsy. Social Science and Medicine, 34(6), 657Y666. of epilepsy. Knowledge of the meaning of epilepsy, Jacoby, A. (1994). Felt versus enacted stigma: A concept re- as perceived by patients, is important to caregivers to visited. Evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38(2), 269Y274. better understand patients’ reactions to life with Kruijver, I., Kerkstra, A., Kerssens, J., Holtkamp, C., Bensing, J., epilepsy and adherence to treatment and to further & van de Wiel, H. B. (2001). Communication between understand what can trigger negative experiences and nurses and simulating patients with cancer: Evaluation of a feelings of stigma. However, further research is communication training program. European Journal of Y needed to better understand patients’ conceptions Oncology Nursing, 5(3), 140 150. Lazarus, R. S. (1991a). Cognition and motivation in emotion. and the relationships between conceptions and American Psychologist, 46, 352Y367. emotions in this field. Furthermore, in the light of Lazarus, R. S. (1991b). Emotion and adaption. New York: the results of this study, it would be of interest to Oxford University press. perform in-depth studies of the role of shame in Lazarus, R. S. (1991c). Progress on a cognitiveYmotivationalY relational theory of emotion. American Psychologist, 46, relation to living with epilepsy. 819Y834. Lazarus, R. S. (1999). Stress and emotionVa new synthesis. London: Springer Publishing. References Loring, D., Meador, K., & Lee, G. (2004). Determinants of quality Abetz, L., Jacoby, A., Baker, G. A., & McNulty, P. (2000). of life in epilepsy. Epilepsy and Behavior, 5(6), 976Y980. Patient-based assessments of quality of life in newly Marton, F., & Booth, S. (2000). Om la¨rande [About learning]. diagnosed epilepsy patients: Validation of the NEWQOL. Lund, Sweden: Studentlitteratur. Epilepsia, 41(9), 1119Y1128. Nijhof, G. (1998). Heterogeneity. Qualitative Health Research, Alexandersson, M. (1994). Den fenomenografiska forskningsan- 8(1), 95Y105. satsen i fokus [The phenomenographic research approach in Olsson, I., & Campenhausen, G. (1993). Social adjustment in young focus]. In B. Starrin, & P. Svensson (Eds.), Kvalitativa adults with absence epilepsies. Epilepsia, 34(5), 846Y851. metoder och vetenskapsteori [Qualitative methods and the Po¨rn, I. (1986). On the nature of emotions. In P. Needham & J. theory of science]. Lund, Sweden: Studentlitteratur. Odelstad (Eds.), Changing positions. Uppsala, Sweden: Anderson, C., Moyle, W., & McAllister, M. (2002). Emotion Philosophical Society and Department of Philosophy, and cardiac technology: An interpretative study. Australian University of Uppsala. Journal of Advanced Nursing, 20(2), 27Y33. Po¨rn, I. (1988). Kirkegaard and the study of the self. Inquiry, Baker, G. A., Brooks, J., Buck, D., & Jacoby, A. (1999). The 27, 199Y205. stigma of epilepsy: A European perspective. Epilepsia, 41(1), Po¨rn, I. (1994). Sja¨lvva¨rderande emotioner [Self-evaluating 98Y104. emotions]. In F. F. I. Finland (Ed.), Samlingsvolym om emo- Baker, G. A., Spector, S., McGrath, Y., & Soteriou, H. (2005). tioner. Helsingfors, Finland: Filosofiska fo¨reningen i Finland. Impact of epilepsy in adolescence: A UK controlled study. Ra¨ty, L. K. A., & Gustafsson, B. (2002). The influence of Epilepsy and Behavior, 6(4), 556Y562. confirming and disconfirming healthcare encounters on the Bishop, M. (2002). Barriers to employment among people with self-relation and quality of life of persons with epilepsy. epilepsy: Report of a focus group. Journal of Vocational Journal of Neuroscience Nursing, 34(5), 261Y272. Rehabilitation, 17(4), 281Y286. Ra¨ty, L. K. A., & Gustafsson, B. (2006). Emotions in relation Bishop, M., & Allen, C. A. (2003). The impact of epilepsy on to healthcare encounters affecting self-esteem. Journal of quality of life: A qualitative analysis. Epilepsy and Neuroscience Nursing, 38(1), 42Y48. Behavior, 4(3), 226Y233. Ra¨ty, L. K. A., Hamrin, E., & So¨derfeldt, B. A. (1999). Quality

Copyright @ 2009 American Association of Neuroscience Nurses. Unauthorized reproduction of this article is prohibited. 210 Journal of Neuroscience Nursing

of life in newly debuted epilepsy. An empirical study. Acta Scheff, T., & Retzinger, S. (1997). Shame, anger and the social Neurologica, 100,1Y6. bond: A theory of sexual offenders and treatment. Ra¨ty, L. K. A., So¨derfeldt, B. A., Larsson, G., & Wilde Electronic Journal of Sociology, 3(3), 1198Y3655. Larsson, B. M. (2004). The relationship between illness Schneider, J. W., & Conrad, P. (1983). Having epilepsy: The severity, sociodemographic factors, general self-concept, experience and control of illness. Philadelphia: Temple Uni- and illness-specific attitude in Swedish adolescents with versity Press. epilepsy. Seizure, 13(6), 375Y382. Sillanpaa, M., Haataja, L., & Shinnar, S. (2004). Perceived impact Ra¨ty, L. K. A., So¨derfeldt,B.A.,&WildeLarsson,B.M.(2007). of childhood-onset epilepsy on quality of life as an adult. Daily life in epilepsy: Patients’ experiences described by Epilepsia, 45(8), 971Y977. emotions. Epilepsy and Behavior, 10(3), 389Y396. Suurmeijer, S., Reuvekamp, M. F., & Aldenkamp, B. P. (2001). Ra¨ty, L. K. A., & Wilde Larsson, B. M. (2007). Quality of life Social functioning, psychological functioning, and quality in young adults with uncomplicated epilepsy. Epilepsy and of life in epilepsy. Epilepsia, 42(9), 1160Y1168. Behavior, 10(1), 142Y147. Todaro, J., Shen, B., Niaura, R., Spiro, A., & Ward, K. (2003). Retzinger, S. (1991). Violent emotions. Newbury Park, CA: Sage. Effect of negative emotions on frequency of coronary heart Robinson, C. A. (1993). Managing life with a chronic condition: The disease (The Normative Aging Study). American Journal story of normalization. Qualitative Health Research, 3(1), 6Y28. of Cardiology, 92, 901Y906. Saburi, G., Mapanga, K., & Mapanga, M. (2006). Perceived Wagner, A. K., Keller, S. D., Kosinsky, M., Baker, G. A., family reactions and quality of life of adults with epilepsy. Jacoby, A., Hsu, M. -A., et al (1995). Advances in methods Journal of Neuroscience Nursing, 38(3), 156Y165. for assessing the impact of epilepsy and antiepileptic drug Scambler, G. (1994). Patients perceptions of epilepsy and therapy on patients’ health-related quality of life. Quality of doctors who manage epilepsy. Seizure, 3, 287Y293. Life Research, 4,115Y134. Scheff, T. (2003). Shame in self and society. Symbolic Interaction, White, M., White, C., & Russel, C. (2007). Multiple sclerosis 26(2), 239Y262. patients talking with healthcare providers about emotions. Scheff, T. (2007). A taxonomy of emotions: How do we begin? Journal of Neuroscience Nursing, 39(2), 89Y101. Retrieved July 2, 2007, from http://www.soc.ucsb.edu/ Zhang, Z. -X., Luk, W., Arthur, D., & Wong, T. (2001). faculty/scheff/47.html Nursing competencies: Personal characteristics contribut- Scheff, T., & Retzinger, S. (1991). Violence and emotions. ing to effective nursing performance. Journal of Advanced Lexington, MA: Lexington Books. Nursing, 33, 467Y474.

IMPORTANT MESSAGE

Easily submit and review your manuscripts online with LWW’s Editorial Manager.

This automated Web-based tool simplifies the manuscript submission and review processes and enables users to electronically submit, review, and track manuscripts and artwork online in a few easy steps. We invite authors and reviewers to begin using the Editorial Manager interface today at www.editorialmanager.com/neuronurse/.

Journal of Neuroscience Nursing’s author guidelines are available at www.jnnonline.com.