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Epilepsy Patients’ Conceptions of Epilepsy As a Phenomenon Lena K

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Epilepsy Patients’ Conceptions of Epilepsy As a Phenomenon Lena K 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
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