Epilepsy patients’ conceptions of epilepsy as a phenomenon
Journal of Neuroscience Nursing, August, 2009 by Lena K.A. Raty, 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.
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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
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