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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.
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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' wellbeing 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.
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