Stigma, Quality of Life in Epilepsy MSc Level

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Is Perceived Stigma Related to Quality of Life in Individuals with Epilepsy? _____________________________________________________________________________ Epilepsy is a common neurological disorder that has often been misunderstood and subsequently feared. These misconceptions can, and have led to stigmatisation for those individuals who have epilepsy. Stigma is often a daily companion and can negatively affect an individuals' quality of life (QOL). This investigation aimed to identify if there was a relationship between stigma and QOL in people who have epilepsy. Further aims were to identify other factors, which may contribute to QOL outcome, and attempt to gain a better understanding of epilepsy through a content analysis of an open-ended questionnaire. The results showed a significant relationship between stigma perception and QOL. A large proportion of respondents in the open-ended questionnaire also reported stigma. The results show a negative impact of stigma and suggest avenues for further research in this domain. ________________________________________________________________________ Introduction Epilepsy is the world's most common neurological disorder, affecting roughly 50 million people worldwide (Jacoby, 2001). A diagnosis of epilepsy has been found to carry with it; concerns about seizures, the burden of having to take medication, and the fears of others reactions. A psychosocial burden has been uncovered (Baker, 2002); which suggests that people with epilepsy suffer as much from a social disease as a neurological disorder (Masia et al, 1999).

Individuals with the disorder report a significant impact of epilepsy in terms of reduced social and leisure opportunities, and poor self esteem (Collings, 1990) compared with individuals without the condition (Jacoby et al, 1996). Misconceptions & Stigma "To have epilepsy is to open oneself to the full force of past and contemporary social prejudice and misunderstanding." Trostel (1997). Historically, epilepsy has been considered a curse of the gods, 'demonic possession,' and a form of madness, consequently epilepsy is a condition that has been feared and rejected. Misconceptions have led to social isolation for the individual with epilepsy and in many cases, for his or her family also (Masia et al, 1999). It is therefore no great surprise that the myths and prejudice that have surrounded epilepsy has resulted in the stigmatisation of people with the disorder (Morrell et al, 2000). Lay perceptions of epilepsy Research in contemporary societies suggests lay perceptions of epilepsy are often inaccurate, this can be a contributing factor to stigmatisation. There are three erroneous beliefs that are said to epitomize public ignorance and misconceptions. Firstly, there is the example that the lay public tend to classify epilepsy in terms of tonic clonic (grand mal) seizures, when in fact there are many different forms of epilepsy. Secondly there is the classification of epilepsy as a 'mental disorder' rather than a physical one. Finally there is the association of epilepsy with the possession of numerous negative and varied anti-social personality traits (Scambler, 1983). Stigma & the stigmatised identity There are many implications of a stigmatised identity for individuals' self-image, self-esteem, and self-respect (Ablon, 2002).

Investigations have shown those who feel stigmatised due to their epilepsy also report problems such as anxiety, depression and decreased life satisfaction (Arnston et al, 1986; Jacoby et al, 1996). Stigmatising conditions, such as epilepsy may also involve some degree of guilt and shame for those affected by them (Das, 2001). This 'shame' had been documented by Schneider et al (1981) who noted that many of his informants in his investigation were distressed by their diagnosis of epilepsy, as; in their view it transformed them from 'normal to epileptic.' There is no doubt then, that stigma can affect an individual's quality of life (QOL) and social interactions. Epilepsy usually has no visual characteristic, which would immediately identify an individual as 'different'. Individuals with epilepsy are therefore in a position whereby they must 'manage' information about their condition, deciding what information they will disclose and to whom. However, as epilepsy's physical manifestations are transient, if the individual does conceal their condition there is the possibility that in the future they may be discovered (for example by others witnessing them having a seizure). Stigma can therefore embrace a double perspective, with individuals either being 'discredited' or 'discreditable' Goffman (1963). People with epilepsy are potentially 'discreditable,' having to manage information about their condition; it is this 'management' of information that can be a potential source of anxiety and stress.

Schneider & Conrad (1981) found their participants contended with the problem of being discredited by employing elaborate procedures for information control, the main method being secrecy and selective disclosure. Planning to avoid high-risk situations that could lead to disclosure was also a key coping mechanism individuals employed to manage information. Previous research It is impossible to quantify the amount of stigma people with epilepsy encounter however, investigations suggest that perceptions of stigma are quite common. Roughly 50% of people with epilepsy report feelings of stigma, with about 15% reporting feeling highly stigmatised due to their epilepsy (Hayden et al, 1992; Baker et al 1997; Choi et al, 2001). The high prevalence of stigma provides ample justification for investigations into its phenomenon. It is suggested that the identification of factors that contribute to stigma among people with epilepsy may yield a better understanding of the conditions that foster its development and perpetuate its existence (Dilorio et al, 1996). Epilepsy & QOL Stigma has been found to adversely affect individuals QOL (Suurmeijer et al, 2002). Epilepsy is a chronic illness, therapy may be prolonged and a cure not often attainable. QOL is therefore an important health care outcome (Jacoby et al, 1992). This notion has been readily accepted, and has resulted in an increased amount of research investigations into QOL in epilepsy (Bishop, 2000). QOL is a key issue, and yet the 'concept' of QOL, remains vague and relatively ill defined; Anderson (1988) argues that the QOL measure "draws attention to the significance in chronic illness of living every day with an impairment that may have consequences for social, emotional, working and family life." Katz (1987) argues that QOL is subject to multiple viewpoints, since "good quality has different meanings for different people in different places and at different times." QOL is therefore generally conceptualised as a multidimensional construct.

In the field of epilepsy, QOL research has usually focussed on the health related QOL model (HRQoL). This term has also been subject to numerous attempted definitions, but there is core agreement that HRQoL generally includes the three principal components of physical, mental and social health (Devinsky et al, 1997). Vickrey et al (1992) has defined HRQoL as encompassing three major domains: physical, mental and social functioning 'including how well an individual functions in daily living (role functioning), as well as specific disease manifestations.' This investigation aims to address functioning in all of these domains. The impact of epilepsy on QOL QOL can be affected by psychological stress caused by stigma and worry. Epilepsy is also associated with increased morbidity, both as a result of seizure-related accidents and injuries (Buck et al, 1997), as an outcome of the effects of antiepileptic medication, and as a result of psychological distress (Shorvon, 1998). The prevalence of psychological morbidity has been shown to be substantially higher among people with epilepsy than those without (Jacoby, 2001). Psychological morbidity includes increased anxiety and depression, social withdrawal and isolation (Lechtenberg, 1984) and a reduced sense of mastery and control (Matthews & Barabas, 1981). One specific area, which may be particularly stigmatising, is within employment. Research has documented individuals suggesting they have been unfairly treated and stigmatised within employment (Jacoby, 1994). Since employment is such a key area in western contemporary societies, it is one where individuals with epilepsy may feel particularly stigmatised. This is due to both legitimate stigmatisation (for example due to health and safety reasons) and other stigmas (such as lay misconceptions).

Aims and objectives ? The main aim of the research is to identify if there is a relationship between the level of stigma an individual feels (as measured by a stigma scale) and their QOL (as measured by the Epilepsy Surgery Inventory QOL measure).

? A further aim is to identify other aspects that may affect QOL in individuals with epilepsy; this will be achieved through content analysis of an open-ended questionnaire. The objective is to identify issues from the perspective of the individual with epilepsy, to gain a thorough understanding of how epilepsy can impact on individuals QOL.

? A final aim is to quantify those factors identified in the content analysis and along with the stigma scale identify which variables contribute more to the outcome of QOL. Study 1 Study 1 aimed to assess the relationship between stigma and QOL. In this first Study respondents' opinions about epilepsy and how the disorder impinges on their QOL was also assessed through content analysis.

The aim was to elicit variables, which may confound the relationship between stigma and QOL. Participants 37 participants took part in Study 1. Respondents were recruited via an advert placed on the Epilepsy Action website. Thus, the sample was self-selected. The ages of participants varied between 18 and 60+ (grouped into 5 classes), with the majority of respondents in the 18-29 and 30-39 age ranges (12 participants in each class). The inclusion criteria incorporated individuals over the age of 18, as the investigation sought to identify QOL issues with adults, inclusion of under 18's was beyond the scope of the investigation.

Design The method of postal questionnaires was chosen to collect the data. The questionnaire is an important instrument of research and a good tool for data collection. This was adopted as it is a relatively low cost method, it means the avoidance of interviewer bias and postal questionnaires have the ...