STIGMA TOWARD EPILEPSY

University of Southampton, 2016

Gumru Sharifova

(Kumru Şerifova)

Table of Contents

Abstract……………………………………………………………………………. 5

Introduction………………………………………………………………………… 6

Literature Review……………………………………………………………………8

Epilepsy: Definition, statistics, and associated difficulties……………………8

Self-stigmatization in epilepsy……………………………………………11

Other people’s stigmatization towards epilepsy…………………………13

Self-Regulatory model and illness perceptions………………………….16

The present study…………………………………………………………18

Method ……………………………………………………………………………..21

Participants…………………………………………………………………21

Design……………………………………………………………………..22

Measures…………………………………………………………………. 22

Procedure………………………………………………………………… 25

Results……………………………………………………………………………. 26

Discussion………………………………………………………………………… 36

Conclusion………………………………………………………………………… 41

References…………………………………………………………………………43

Appendices……………………………………………………………………….. 50

Appendix A………………………………………………………………50

Appendix B……………………………………………………………….52

Appendix C……………………………………………………………….62

Appendix D……………………………………………………………….64

Appendix E………………………………………………………………….67

Appendix F………………………………………………………………….69

Abstract

The research highlights the importance of positive attitudes toward people who suffer from epilepsy; as stigmatization has an adverse impact on individuals who suffer from epilepsy in a sense that they cannot find jobs, maintain their treatment, start a family and so on. These kinds of problems decrease the quality of their life. It is important to eliminate the stereotyping of “mental illnesses” or “cognitive dysfunction” about epilepsy and educate people so that they can understand epilepsy well. As people who suffer from epilepsy are struggling with a severe neurological disease, the negative attitude toward them may result in serious problems as well. Besides all these reasons, the study aims to determine awareness and knowledge regarding epilepsy and stigma. It plans to detect whether there is any association between epilepsy and people’s negative attitudes toward it. It also plans to identify whether there is an association between SES (Socioeconomic status) and people’s attitude toward epilepsy.

The survey includes three parts: demographic questions which are related to age, gender, SES, Revised Illness Perception Questionnaire (IPQ-R) for healthy individuals, which have two sections and assess healthy people’s views about epilepsy, and Reaction to Epilepsy in the Workplace’s survey, which consists of a vignette. The vignette includes eight questions that aim to gather information on how comfortable people feel when interacting with someone who suffers from epilepsy.

Keywords: epilepsy, stigma, quality of life, epilepsy awareness, epilepsy knowledge,

Stigma towards epilepsy

Introduction

The overreaching prevalence of chronic illnesses is recognized as one of the most unsettling modern problems (Earnshaw & Quinn, 2011). Despite the lack of prevalence statistics for the experience of chronic illnesses globally, it has been argued that many individuals are affected by such illnesses (World Health Organisation, 2009). Recent estimates reveal that approximately 65% of deaths occur due to a presence of chronic illness, with this percentage expecting to increase by up to 20% by 2020 (World Health Organisation, 2013). The notion that chronic illnesses represent a major risk factor for the overall mortality rates is also evident in the finding that approximately 50% of people live with a chronic condition at present times (Wu & Green, 2014).

One such chronic illness that represents a worldwide concern is epilepsy, a common neurological condition that is characterized by the occurrence of epileptic seizures, or the sudden excessive discharges of electrical activity in the brain (McNamara, 1994). These seizures can be either undetectable or can occur in a prolonged manner, characterized by the episodes of intense physiological shaking. In order to get diagnosed with epilepsy, the requirement is that seizures occur recurrently, with at least two unprovoked seizures occurring within more than 24 hours (Flink et al., 2002). According to the World Health Organization’s (WHO, 2016) reports, there are approximately 87 people who are diagnosed with epilepsy every day and around 50 million people who are diagnosed with epilepsy in the world. A recent meta-analysis indicates that the prevalence of epilepsy in developed countries is 5.8 per 1000 individuals, and 15.4 per 1000 individuals in underdeveloped countries, thus concluding that epilepsy is a quite wide-spread condition (Bate et al., 2007).

Importantly, it is estimated that 60 to 90 percent of people do not seek treatment for epilepsy due to experienced stigma and/or inadequate health care resources, which results in not receiving a sufficient treatment that would increase these individuals’ quality of life (Jacoby, 1995; Marinas et al., 2011). This is why it is commonly proposed that investigating stigma towards chronic conditions such as epilepsy is of crucial importance (Schneider & Conrad, 1980). In order to contribute to the general knowledge of epilepsy stigmatization, the present research was set onto investigating epilepsy-related perceptions, held by individuals without epilepsy, and how these perceptions impact attitudes towards working with people with epilepsy. It is hoped that such an investigation will contribute to the literature by demonstrating the link between lower levels of perceptions of identity, causes, timelines, and consequences of epilepsy, and lower attitudes towards working with people with epilepsy. If such findings are demonstrated, interventions can be crafted to increase positive perceptions of epilepsy so that individuals have more positive attitudes towards working with people with epilepsy.

In order to present its argumentation and review the literature on the topic, the paper initially focuses on outlining information regarding epilepsy, by focusing on its definition, incidence, prevalence, risk factors, and associated prognosis, comorbidity, and cognitive and behavioral problems. The focus then moves on discussing self-stigmatization that is experienced by epileptic patients, and how this stigmatization acts as a function of other people’s perceptions of their illness. Following this, the focus moves on discussing the Self-Regulatory model, which was posed by Leventhal and colleagues (1997) and which is used as a cornerstone for the present investigations on others’ perceptions of epilepsy. The literature review forms the basis for introducing the present research, which is discussed before moving to describe the research’s methodology and results.

Literature review

Epilepsy: Definition, statistics, and associated difficulties

As mentioned previously, epilepsy is considered as a neurological condition that is characterized by recurrent epileptic seizures, which lead individuals to experience short or prolonged vigorous bodily shaking (McNamara, 1994). This shaking can be localized, and thus involve merely one part of the body, or can be generalized, thus involving the whole body. In case of severe seizures, these can result in physical injuries and/or broken bones, loss of consciousness, and temporarily diminished bowel or bladder function (World Health Organisation, 2016). As for the nature of seizures, these are considered to act as a function of excessive electrical discharge in brain cells, which can either last shortly, becoming undetectable or can last for a prolonged period of time (Hauser & Hesdorffer, 1990). In some circumstances, seizures can occur rarely (e.g., once per year) or can occur rather frequently (e.g., multiple times per day) (McNamara, 1994). The diagnosis of epilepsy does not occur when individuals had experienced merely one epileptic seizure during their lifetime, as these can occur even in the non-epileptic populations. Instead, the diagnosis requirement is that individuals have experienced at least 2 unprovoked seizures within a period of 24 hours (Flink et al., 2002).

When it comes to the incidence of epilepsy, research reports that the condition affects approximately 40 to 70 people per 100,000 people annually (MacDonald, Cockerell, Sander, & Shorvon, 2000). There are also indications that epilepsy is more likely to affect children than adults (Blumer, Wakhlu, Davies, & Hermann, 1998). According to the World Health Organization’s (2016) reports, epilepsy is more common in underdeveloped than in developed countries. The common explanation for this finding is that underdeveloped countries lack sufficient proper health delivery, which may increase the incidence of epilepsy (Sander, 2003). Moreover, in relation to the prevalence of epilepsy, statistics indicate that approximately 5.8 per 1000 individuals in developed countries and 15.4 per 1000 individuals in underdeveloped countries develop epilepsy (Bate et al., 2007). It is a well-recognized fact that epilepsy increases individuals’ mortality rate, therefore contributing to the seriousness of the condition (Hesdorffer, Benn, Cascino, & Hauser, 2009).

Research also recognizes a wide variety of risk factors that are linked to the development of epilepsy. In case of young individuals, the most prevalent risk factors refer to genetic factors, and in the case of older individuals, the most prevalent risk factor is the existence of a cerebrovascular disease (Phillips et al., 1998). Other prominent risk factors include head trauma, infections of the central nervous system, tumours, and parasitic conditions (de Boer, Mulla, & Sander, 2008). In any case, it is argued that epilepsy is mostly a genetic condition, the expression of which is increased with certain environmental and experiential factors, which include those described above (Duncan, Sander, Sisodiya, & Walker, 2006).

When it comes to epilepsy remission, research indicates that approximately 68% of individuals who attend treatment reach remission, although these statistics apply merely for developed countries (Sander, 2003). Factors that seem to be predictive of remission include the early onset of epilepsy, low number and frequency of seizures, and responses to AEDs – devices that check the heart rhythm and restore this rhythm by sending an electric shock to the heart (Kwan & Sander, 2004). Higher rates of remission in developed countries are usually attributed to the prevalent use of AEDs, although this does not imply that patients in underdeveloped countries do not reach remission due to other reasons (de Boer et al., 2008). In relation to life prognosis of patients with epilepsy, it has been argued that mortality is additionally increased due to comorbid conditions. These comorbid conditions can include other neurobiological disorders, such as learning disabilities, speech disabilities, and cognitive failures, as well as other physical conditions, such as physical disability and paralysis (Titlic, Basic, Hajnesk, & Lusic, 2009). Even in cases when epileptic patients do not have comorbid conditions, it is expected that epilepsy reduces life expectancy by up to 18 years (Gaitatzis, Trimble, & Sander, 2004).

The final point worth discussing regarding epilepsy relates to the cognitive functioning and behavioral problems that are characteristic of epileptic patients. According to de Boer and colleagues (2008), epilepsy is commonly characterized by a variety of learning impairments, the most common of which involves memory. These memory impairments can be either mild, encompassing loss of concertation, or can be severe, encompassing complete disorientation (Aikia, Kalviainen, Mervaala, & Reikkenen, 1999). Learning impairment act as an additional cognitive dysfunction in epileptic patients, occurring due to reduced concentration, disorientation, and problems with memory storage (de Boer et al., 2008). These cognitive problems may be especially problematic in children, therefore interfering with their learning in educational settings (Austin, Huberty, Huster, & Dunn, 1994). Finally, as for the associated behavioral and psychiatric problems, research recognizes that epileptic patients are commonly a subject of social discrimination (Jacoby, 1995). This is because these individuals may experience a seizure in public settings, followed by potential injuries, all of which leads to the experiences of social embarrassment. This often results in a reduced mood in epileptic patients, which affects their behavioral patterns (de Boer et al., 2008). In some instances, these experiences of social discrimination can lead to the development of psychiatric problems, including depression and anxiety disorders (Altshuler, Devinsky, Post, & Theodore, 1990). Due to the possible detrimental effects of social discrimination, research has placed a great focus on investigating stigma of epilepsy, both from the perspective of epileptic patients themselves as well as other people (Schneider & Conrad, 1980; Jacoby & Austin, 2007; de Boer et al., 2008). Therefore, the self-stigmatization of epileptic patients is the next focus of the present literature review.

Self-stigmatization in epilepsy

Apart from experiencing physical difficulties that occur due to an illness, people with chronic illnesses are also prone to self-stigmatization. This phenomenon occurs in a variety of chronic illnesses (Mittal, Sullivan, Chekuri, Allee, & Corrigan, 2012), and is especially likely to occur in patients with epilepsy (de Boer et al., 2008). Self-stigmatization refers to the process whereby individuals internalize negative stereotypes regarding the illness, further affecting their own functioning. In particular, it has been argued that self-stigmatization consists of three subprocesses (Corrigan & Watson, 2002). The first is labeled as awareness, referring to epileptic individuals’ awareness of the stereotypes that others hold of epilepsy. The second sub-process of self-stigmatization is agreement, whereby epileptic individuals display a tendency to agree with the perceived stereotype; and the third subprocess is an application, which occurs when individuals with epilepsy apply the perceived stereotype to themselves. Application of the stereotype to themselves lead epileptic patients to experience a wide range of negative outcomes, including reduced hope, self-esteem, self-efficacy, and quality of life (Schneider & Conrad, 1980; Jacoby, Snape, & Baker, 2005). Equally importantly, self-stigmatization may reduce epileptic patients’ help-seeking behavior, as well as treatment adherence, both of which reduce the chances of remission (Mittal et al., 2012). Epileptic individuals who experience self-stigmatization may be also less likely to seek employment and have a fulfilling social life (de Boer et al., 2008).

According to Earnshaw and Quinn (2012), it is possible to differentiate between three types of self-stigmatization. The first of these refers to the internalized stigma, relating to the degree to which epileptic patients internalize and apply the stigma to themselves. These internalizations may include the beliefs that patients themselves are responsible for the illness, and that their condition should make them feel embarrassed, guilty, or unworthy (Kilinc & Campbell, 2009). The second type of stigma is an experienced stigma, which refers to the extent to which epileptic patients believe that other people discriminate against them due to the epilepsy condition. Thus, whereas internalized stigma occurs at the personal level, experienced stigma occurs at the interpersonal level (Earnshaw & Quinn, 2012). This type of stigma is commonly experienced in educational, health, and work settings (Hamilton-West & Quine, 2009). Finally, the third type of stigma is referred to as anticipated stigma, relating to the extent to which individuals with epilepsy anticipate that others will stereotype against them in the future (Earnshaw & Quinn, 2012). This type of stigma acts as a result of the internalized and experienced stigma, therefore being based both on the personal perceptions and interpersonal reactions. That is because they have experienced stigma, individuals with epilepsy often internalize the stigma and suspect that they will be stigmatized in the future. Importantly, all types of stigma have been related to high levels of personal distress, often acting as a stepping stone for the development of depressive and anxiety symptomatology (Altshuler et al., 1990). Finally, what can be concluded from this brief review is that the degree of self-stigmatization, which has adverse effects on epileptic patients’ quality of life (Marinas et al., 2011), often acts as a result of other people’s stereotyping. For this reason, the following section addresses the topic of stigmatization towards people with epilepsy.

Other people’s stigmatization towards epilepsy

Stigma is a universal concept that occurs across culture, history, social norms, and language, defined as a tendency to hold negative and unfair attitudes towards a specific occurrence, such is a disease or particular population, such are individuals with a disease (Lim, Li, Cassanova, & Tan, 2012; Jacoby & Austin, 2007). Stigma and discrimination that occur in response to mental and health conditions act as global phenomena and are recognized to occur in response to epilepsy as well (Schneider & Conrad, 1980). The most detrimental effect of stigmatization of people with epilepsy is that they are being discriminated against, which is demonstrated in the notion that epileptic individuals tend to be a target of prejudice in various life spheres. As it was pointed out by Kale (1997), “the history of epilepsy can be summarised as 4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma” (p. 2).

According to Shibre and colleagues (2006), an experience of stigma is so prevalent in individuals with epilepsy that it commonly results in them focusing more on their psychological problems associated with stigma rather than on the effects of the disorder itself. According to Fernandes et al. (2007), the magnitude of stigma in epilepsy is greater than that of other chronic diseases such as diabetes. In fact, epilepsy is one of the most stigmatized neurological conditions that affect individuals’ aspects of lives, including career, and personal and educational life, which further leads to poor quality of life (Fisher, et al., 2000). The psychosocial effect of others’ stigma causes patients’ loss of self-esteem, social withdrawal, and isolation (Link, Struening, Neese-Todd, Asmussen, Phelan, 2001). Additionally, stigmatization has an adverse effect on people’s quality of life, as well as the quality of lives of their family members (World Health Organisation, 2016).

According to Jacoby and Austin (2007), people who are suffering from epilepsy feel embarrassed and think that she/he may disturb other people following the seizure. After they experience a public seizure, they start experiencing stigmatization (Sanjeev & Aparna, 2011). This is because other individuals may end up believing that an epileptic attack occurred due to fragility, impotence, or mental retardation, further not wanting to witness or deal with an epileptic attack (Falavigna et al., 2007). This may lead to epileptic people avoiding to go outside unless somebody accompanies them, or to being afraid of others’ reactions if they witness an epileptic seizure. Because of such stigmatization, epileptic individuals have lowered self-perception and more negative views of their abilities, such as seeking employment, developing a career, driving, or having a family and/or children. All these difficulties, as well as negative views held by both others and epileptic individuals themselves, lead to lack of unemployment, social isolation (Baskind & Birbeck, 2005), depression (Kwon & Park, 2013), anxiousness (Aydemir, Jacoby & Ozkara, 2012), and increased frequency of seizures (Bruno et al., 2015).

Finally, discrimination against people with epilepsy is evident in many cross-national findings relating to the outcomes of others’ stigmatization. For instance, findings from Africa indicate that individuals with epilepsy tend to be socially excluded, experiencing difficulties with finding housing and employment (World Health Organisation, 1999). In the Netherlands, children with epilepsy have lower school attendance, which is usually attributed not to their learning impairments but to the presence of discrimination (World Health Organisation, 1999). In China, individuals with epilepsy experience difficulties in finding a partner, mostly because others believe that epileptic patients should feel disgrace due to their condition (Parker & Smith, 2003). In Canada, epileptic individuals have a lower income than non-epileptic individuals, presumably because they have difficulties in finding employment (Wiebe, Bellhouse, Fallahay, & Eliasziw, 1999). In the United Kingdom, up to 36% of individuals with epilepsy experience a refusal for getting various types of insurance (Jacoby & Jacoby, 2005). Discrimination is likewise prominent in healthcare settings and by healthcare workers (Earnshaw & Quinn, 2012). These types of discriminatory behaviors may have an overreaching impact on epileptic patients because they may find it hard to obtain resources that are necessary for easing their condition and living functional and fulfilling lives.

Importantly, and despite the existence of the above-mentioned findings, not much research exists regarding stigmatization of epilepsy in work-related settings. Although it is known that epileptic individuals may find it difficult to find employment opportunities due to discrimination (World Health Organisation, 1999; Baskind & Birbeck, 2005), no research focused on the extent to which stigmatization impacts other people’s attitudes towards working with people with epilepsy. This is an important research question in so far that there is a possibility that, after finding employment, epileptic patients find it difficult to stay at their workplace – not because of their impairments and actual condition, but because others may hold negative attitudes towards collaborating with epileptic individuals. Thus, the present research aims to investigate whether epilepsy-related illness perceptions, which can be conceptualized as the degree of stigmatization held by other individuals, predicts attitudes towards working with people with epilepsy. In order to set the present research into an already existing framework, the following section focuses on outlining the Self-Regulatory model (Leventhal et al., 1997) that has been used to study epilepsy-related illness perceptions.

Self-Regulatory model and illness perceptions

In order to explain how individuals with chronic illnesses incorporate their beliefs about the illness to inform their health-related behaviors and decision-making, researchers have postulated a wide variety of models. Some of these models include the Theory of Reasoned Action (Fishbein, 1979), Theory of Planned Behaviour (Ajzen, 1985), Health Belief Model (Rosenstock, 1974), and Self-Efficacy model (Bandura, 1977). The focus of all these models is on explaining how individuals’ cognition impacts adjustment to the illness. In recent decades, and for the purpose of reaching a more in-depth understanding of the link between illness representations and coping, research started relying on the Leventhal and colleagues’ (1980; 1997) Self-Regulatory model, which quickly achieved overreaching application. The basic premise of this model is that patients themselves create internal models that are used to represent their own illness. In particular, individual with chronic illnesses are expected to have developed ideas regarding identity, causes, timeline, consequences, and cure and controllability of the illness. These, in turn, are thought to influence the ways individuals cope with their illness, which then impacts the appraisal of associated outcomes. Importantly, the model also holds that coping strategies that individuals select to use on the basis of their illness representations further impact the outcome of the illness (Levanthal et al., 1980; 1997).

The recognized benefit of relying on the Self-Regulatory model is that it allows the exploration of representations of the illness from various standpoints (O’Connor, Jardine, & Millar, 2008). These various standpoints are described by Weinman, Petrie, Moss-Morris, and Horne (1994). For example, the identity component of the illness perception refers to individuals’ beliefs about the label they have due to the experienced chronic condition, as well as about the related symptoms and the link between the identity and symptoms. The casual component relates to patients’ ideas in relation to the likely causes of their condition, and the timeline component focuses on the perceptions of how long the illness will last. Furthermore, the consequences component incorporates individuals’ beliefs regarding the most likely outcomes of their illness, both in relation to their health and to their psychological, emotional, and social functioning. Finally, the cure component refers to ideas regarding the possibility of their illness being cured or at least controlled. Moreover, research indicates that these various components of illness representations are distinct from each other, in so far that they relate to different concepts, yet are also closely interrelated, in so far that one illness perception may influence another illness perception (Levanthal et al., 1980).

In regards to the research of illness perceptions of epilepsy that are held by epileptic patients themselves, research reveals that patients may often hold beliefs that are at odds with actual medical knowledge (Goldstein, Holland, Soteriou, & Mellers, 2005). Further studies reveal that individuals with epilepsy often experience confusion regarding their condition and that they are uncertain of its cause (Green, Payne, & Barnitt, 2004). When these confusions occur, patients are further uncertain regarding the timeline of the illness and the possibility for control or cure. There are also findings that act as confirmatory evidence for the applicability of Levanthal’s Self-Regulatory model with epileptic patients. For example, Goldstein and colleagues (2005) found in a sample of 43 adults with epilepsy that negative illness perceptions predict the engagement in maladaptive coping strategies, including detached and anxious-avoidant copying. The reliance on these strategies, in turn, was found to predict epileptic individuals’ mood, and anxiety and depression levels. These findings contribute to the idea that the reliance on the Self-Regulatory model and the assessment of illness perceptions prove useful in determining important health-related outcomes in general, and in epileptic patients in particular.

What is important to be mentioned at this point is that, although there is research on epileptic patients’ illness representations and their consequences, no research investigated the epilepsy-related illness representations held by other individuals and their associated consequences. It is hereby argued that as epileptic individuals’ illness representations act as a predictor of their coping mechanisms and mood-related outcomes, so others’ representations of epilepsy should affect their tendency to have positive versus negative views about epilepsy. Said differently, other people can likewise hold beliefs regarding the identity of epileptic patients, the causes, consequences, and timeline of their illness, and the possibility for cure or control. Given that no research focused on the role of others’ illness perceptions on attitudes towards epilepsy, the present research aims to act to this perceived gap in the literature. The following section of the paper briefly summarizes the main goals of the research and their relation to the reviewed literature.

The present study

In the above-presented literature review, two perceived gaps were identified. The first was that, although various studies investigated the consequences of stigmatization of people with epilepsy, thus recognizing that stigmatization can result in discrimination in employment, housing, and the provision of insurance settings (World Health Organisation, 1999; Baskind & Birbeck, 2005; Earnshaw & Quinn, 2012), no research has focused on the discrimination in workplace settings. Given that people with epilepsy, like any other individuals, need a stable job on which they will both be happy and be positively supported by their colleagues, this area of research is deemed as highly important. Second perceived gap in the literature relates to the notion that, although studies focused on investigating illness perceptions of people with epilepsy themselves, thus recognizing that such perceptions impact their coping and recovery (Green et al., 2004; Goldstein et al., 2005), no empirical research focused on investigating epilepsy-related illness perceptions held by other people. This area of research is important because negative perceptions of illness perceptions held by other individuals may reveal a degree to which the general public is aware of causes, consequences, timelines, controllability, and cure of epilepsy. Driven by these recognized gaps in the literature, the present study aims to investigate other people’s perceptions of epilepsy and attitudes towards epilepsy, and how these influence people’s attitudes towards working with people with epilepsy. For exploratory purposes, the study also investigates how people’s attitudes towards epilepsy influence attitudes towards working with people with epilepsy. It is hoped that such an investigation will shed lights regarding the extent to which the generally held beliefs and attitudes about epilepsy lead to discrimination in the workplace.

At this point, it is necessary to establish the reasoning that guided the formation of hypotheses in the present research. There are few reasons why, first of all, it is logical to assume that individuals may perceive epilepsy either negatively or inaccurately, therefore holding general negative attitudes towards epilepsy and negative attitudes towards working with people with epilepsy. Research indicates that people may often believe that epileptic individuals demonstrate a lack of problem-solving behavior, emotional instability, and introverted personality, which then presumably makes them less competent for work (Lee, Yoo & Lee, 2005). Moreover, people with epilepsy may interject others’ views stemming from stigmatization and act accordingly, therefore exhibiting the prejudiced behaviors (Lim & Tan, 2014). This may further increase the stigmatization in the workplace. There is also evidence that people’s views of chronic illnesses are commonly at odds with medical knowledge, thus resulting in negative attitudes (Goldstein et al., 2005). If this happens with epilepsy as well, then it may happen that people, for example, think that epilepsy is caused by epileptic individuals themselves, or that their condition cannot be controlled, thus further developing negative attitudes towards epilepsy and towards working with people with epilepsy. For instance, they may either think that people with epilepsy are not reliable as colleagues or may be afraid that they need to provide some support in case of seizures, which they may not be willing to do for a variety of reasons. Importantly, such stigmatization is hereby believed to be less likely to occur if individuals perceive epilepsy in a positive light, therefore possessing more epilepsy-related knowledge. When this is the case, people are expected to have more positive attitudes towards people with epilepsy. On the basis of this reasoning, the following hypotheses are formed:

H1. More positive perceptions of epilepsy (i.e., awareness of various aspects of epilepsy) will be positively related to and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H1a. Higher scores on the symptomatology subscale of the Illness Perception Questionnaire (i.e., awareness of symptoms) will be positively related to, and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H1b. Higher scores on the timeline subscale of the Illness Perception Questionnaire (i.e., awareness of epilepsy-related timelines) will be positively related to, and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H1c. Higher scores on the causes subscale of the Illness Perception Questionnaire (i.e., awareness of epilepsy-related causes) will be positively related to, and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H1d. Higher scores on the consequences subscale of the Illness Perception Questionnaire (i.e., awareness of epilepsy-related consequences) will be positively related to, and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H1e. Higher scores on the cure and controllability subscale of the Illness Perception Questionnaire (i.e., awareness of epilepsy-related possibilities for cure and controllability) will be positively related to, and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy.

H2. More positive attitudes towards epilepsy will be positively related to and will furthermore predict more positive attitudes towards working with people with epilepsy.

Method

In the present section, the methodology used in research will be described in depth. The first focus is on describing the sample used in research, followed by the explanation of the employed design and in-depth explanation of employed measures. The section concludes by outlining the study’s procedure.

Participants

The sample in the present research consisted of a total of 172 participants, out of which 54 (31.4%) were male and 118 (68.6%) were female. Their age ranged from 16 to 71 (M = 34.19, SD = 14.14), and they belonged to different educational groups. In particular, 30 participants (17.4%) completed secondary school, 62 (36%) completed college, and 80 (46.5%) completed a university education. Importantly, the present sample originates from an already existing (i.e., provided) data set, and thus no actual recruitment procedures were conducted.

Design

The study was designed as a correlational study. The purpose of the study was two-fold. First of all, the study investigated the extent to which perceptions of epilepsy (i.e., perceptions of symptoms, time-lines, causes, consequences, cure, and controllability) (IVs) predict attitudes towards epilepsy and attitudes towards working with people with epilepsy (DVs). Moreover, the study investigated the degree to which attitudes toward epilepsy (IV) predict the attitudes towards working with people with epilepsy (DV). In order to fulfill these research aims, the employed analyses consisted of correlations and linear regression analyses. In all regression analyses, participants’ age, gender, and educational level acted as controlled variables. To complete all statistical analyses, the guidelines used were those put forward by Field (2009).

Measures

Data collection was completed by using an online cross-sectional questionnaire. This questionnaire contained three parts, assessing (1) demographics of the sample, (2) epilepsy-related illness perceptions, (3) attitudes towards epilepsy, and (4) attitudes towards working with people with epilepsy. Each of these measures will now be described in detail.

Demographics. To assess the characteristics of the sample, participants were asked to indicate their age, gender, and educational level (i.e., secondary school, college, or university).

Epilepsy-related illness perceptions. In order to assess participants’ perceptions of epilepsy, the employed measure was an adaptation of the Illness Perception Questionnaire (IPQ-R; Figueiras & Alves, 2007). In general, this measure is used to assess the perceptions of illness of patients themselves – however, the adapted version focuses on laypersons’ perceptions of epilepsy. The additional adaptation made in the present research was that every time a word “my illness” was mentioned, this was rephrased into “epilepsy” (e.g. “the negative effects of my illness can be prevented by treatment“ became “the negative effects of epilepsy can be prevented by treatment”).

The questionnaire had several subscales. The first subscale focused on epilepsy-related symptomatology. Here, participants were presented with a total of 17 symptoms (e.g., loss of consciousness, temporary confusion, memory difficulties), for which they were asked to indicate whether they do or do not occur as a part of epilepsy. Most of the presented symptoms were actually symptomatic of epilepsy and were thus given a code of 1. Symptoms that were not symptomatic of epilepsy (e.g., sore throat) were given a code of 0. The final score on this subscale was calculated by summing up the number of correct answers.

The second subscale assessed epilepsy-related time-lines, compromising 8 statements, an example of which is “I expect epilepsy to last for the rest of person’s life”. Participants were asked to indicate the extent to which they agree with these statements, on a scale that ranged from 1 (strongly disagree) to 5 (strongly agree). Some items needed to be reverse-scored so that higher scores indicate more accurate perceptions of epilepsy-related time-lines. The final mean score on this subscale ranged from 1 to 5. Further subscale of the questionnaire focused on epilepsy-related consequences, which were assessed by 4 statements (e.g., “Epilepsy strongly affects the way patients see themselves as persons”). These statements were also assessed on a 1-5 scale, with a final mean score ranging from 1 to 4.

When it comes to participants’ perceptions of cure and controllability of epilepsy, these were assessed by a total of 6 items, an example of which is “The negative effects of epilepsy can be prevented (i.e., avoided) by treatment”. These items were assessed on an identical 1-5 scale, with some items needed to be reverse coded so that final score represents more accurate perceptions regarding the cure and controllability of epilepsy. The final score on this subscale ranged from 1 to 6. The final section of the questionnaire focused on the knowledge of epilepsy-related causes. Here, participants were presented with a total of 18 possible causes of epilepsy (e.g., stress or worry, heredity, family problems or worries, and their own behavior). They were asked to indicate to which extent those cases have a potential to actually cause epilepsy, on a scale ranging from 1 (strongly disagree) to 5 (strongly agree). Items that contained incorrect causes of epilepsy needed to be reverse-scored, so that final mean score represents more knowledge of epilepsy causes. The final score had a potential range from 1 to 18.

Attitudes towards epilepsy. The attitudes towards epilepsy were assessed with a total of 8 items, examples of which include “Epilepsy makes me feel afraid” and “Epilepsy makes me feel angry”. As it was the case with the previous scale, participants were asked to indicate the degree of agreement with each statement on a scale that ranged from 1 (strongly disagree) to 5 (strongly agree). Since all items were negatively phrased (i.e., implying more negative attitudes), it was necessary to reverse-score them, so that higher scores represent more positive attitudes towards epilepsy. The final score on this scale ranged from 8 to 40.

Attitudes towards working with people with epilepsy. The second part of the questionnaire contained a vignette questionnaire (Harden, Kossoy, Vera, & Nikolov, 2004), which assessed attitudes towards working with people with epilepsy. Initially, participants were presented with a vignette, describing the following situation: “A 21-year-old woman was recently transferred into your department and efficiently carries out her work. You eventually find out that she was referred to your department for employment by the local epilepsy foundation. She leaves early about once every 2 months, which she states is for a doctor’s appointment”. After they have read the vignette, participants were asked to reply to a series of 11 questions, example of which includes: “How much do you think her epilepsy will affect the ability to do her job?”, with possible answers being “(a) Not at all, her illness will not interfere with her ability to do her job”, “(b) There will be some effects on her ability to do her job”, and “(c) Her illness will greatly interfere with her ability to do her job”. In order to calculate the final score, the first step was to reverse-score some of the answers so that higher scores represent more positive attitudes towards epilepsy. The final score was then calculated by taking a mean of scores on all items, having a potential range from 1 to 11.

Procedure

As it was mentioned previously, the present study employed an already existing dataset, and thus no procedures were employed for recruiting and assessing participants. However, it is important to mention what would have been done if the present researcher conducted this study. In this case, it would have been important to obtain an informed consent from all participants, where they would be introduced to the study and asked to agree to take part in the research. They would have needed to be given an opportunity to withdraw from the study at any moment, either during the actual participation or after the completion of the questionnaire. It would have also been important to stress out that participation is anonymous and that nobody except the research has access to the obtained data. At the end of the study, participants would need to be fully debriefed regarding the true nature of research questions.

Results

In order to present the results obtained in the present research, the present section starts off by reporting descriptive statistics. The focus then moves on presenting the results of reliability analyses, followed by presenting the results of the correlation analyses. Finally, the focus is on reporting the results of regression analyses. As for the latter presentation, the initial focus is on presenting the results of the first hypothesis, stating that higher final scores on the Illness Perception Questionnaire (i.e., awareness of various aspects of epilepsy) will be positively related to and will furthermore predict more positive attitudes towards epilepsy and towards working with people with epilepsy. The focus is further on presenting the results of all sub-hypotheses of the first hypothesis, which link scores on each particular subscale of the Illness Perception Questionnaire and attitudes towards epilepsy and attitudes towards working with people with epilepsy. Finally, the focus moves on presenting the results for the second hypothesis, which stated that more positive attitudes towards epilepsy will be positively related to and will furthermore predict more positive attitudes towards working with people with epilepsy.

Descriptive statistics

The first step in the analysis was to conduct descriptive statistics – first for demographic variables that characterize the sample and then for all independent and dependent variables that were used in the research. Table 2 reveals frequencies and percentages for participants’ gender and education level, as well as the minimum and maximum values, and means and standard deviations for participants’ age, which were summarized in the “Participants” section of the methodology. Table 2 shows the minimum and maximum values, together with means and standard deviations, for all variables that were used in the research. What can be noticed on this table is that participants in the present sample had moderately accurate perceptions of epilepsy-related symptomatology, as well as that they had a moderately high accuracy of perceptions regarding epilepsy-related time-lines, consequences, causes, and cure and controllability. Finally, attitudes towards people with epilepsy were moderately positive, whereas attitudes towards working with people with epilepsy were quite small. Standard deviations for these variables were rather small, thus indicating low variability in scores.

Table 1. Descriptive statistics for demographic variables.

	Frequencies		Percentages
Gender Male Female	54 118		31.4 68.8
Education level
None Primary school Secondary school College University	0 0 30 62 80		0.0 0.0 17.4 36.0 46.5
	Min	Max	M	SD
Age	16	71	34.19	14.14

Table 2. Descriptive statistics for all variables used in research.

	Min	Max	M	SD
Epilepsy-related illness perceptions
Symptomatology	0.00	16.00	5.77	3.79
Time-lines Consequences Cure and controllability Causes	2.50 1.25 1.00 2.06	4.25 4.50 4.67 4.56	3.40 3.13 3.19 3.44	.36 .67 .69 .44
Attitudes towards epilepsy	1.00	5.00	3.23	.59
Attitudes towards working with people with epilepsy	1.36	2.64	2.04	.27

Reliability analyses

After conducting descriptive statistics, the next important step of the data analysis was to test for the reliabilities of the employed scales and subscales, which was achieved by looking at Cronbach alpha values. Reliability analysis was first conducted separately for each of the subscales of the Illness Perception Questionnaire. Analysis revealed that the subscale measuring perceptions of epilepsy symptomatology had a Cronbach alpha of .84; the subscale measuring perceptions of epilepsy-related time-lines had a Cronbach alpha of .83; the subscale measuring perceptions of epilepsy consequences had a Cronbach alpha of .82; the subscale measuring perceptions of epilepsy-related causes had a Cronbach alpha of .81; the subscale measuring attitudes towards epilepsy had a Cronbach alpha of .72. Finally, a reliability analysis was also conducted for the scale that measured the attitudes towards working with people with epilepsy, revealing a Cronbach alpha of .72. Thus, all scales had sufficient reliabilities, which is indicated by the fact that all Cronbach alphas were higher than .70.

Correlation analyses

Before conducting the regression analyses to test for the study’s hypotheses, it was initially important to conduct correlation analyses and see (1) which control variables correlate with which dependent variables; and (2) which independent variables (i.e., perceptions of epilepsy-related symptomatology, time-lines, consequences, cure and controllability, and attitudes towards epilepsy) correlate with the dependent variables (i.e., attitudes towards epilepsy and attitudes towards working with people with epilepsy). Since all variables were normally distributed, the analysis relied on Pearson correlation analyses.

Table 3 shows the results of the Pearson correlation analysis for the relationship between all control variables and all dependent variables. What the results of the analyses revealed is that attitudes towards epilepsy did not exhibit a significant relationship with any of the control variables (all ps > .05), whereas attitudes towards working with people with epilepsy correlated negatively with age (r = -.17, p = .030), but not with other control variables (all ps > .05).

Table 4 shows the results of Pearson correlation analyses for the relationship between all independent and dependent variables. What can be seen on this table is that attitudes towards epilepsy correlated significantly with all except one independent variable. In particular, this dependent variable showed a significant positive relationship with the perceptions of epilepsy-related cure and controllability (r = .47, p < .001), and a significant negative relationship with the perceptions of epilepsy-related symptoms (r = -.28, p < .001), time-lines (r = -.25, p = .001), and consequences (r = -.19, p = .011). There was no significant relationship between attitudes towards epilepsy and perceptions of epilepsy-related causes (r = -.02, p = .791). Moreover, the scores for attitudes towards working with people with epilepsy correlated significantly with all independent variables.

Table 3. Correlation matrix showing relationship between control and dependent variables.

	Gender	Age	Education level	Attitudes towards epilepsy	Attitudes towards working with people with epilepsy
Gender	1	–	–	–	–
Age	-.11	1	–	–	–
Education level	-.04	-.33**	1	–	–
Attitudes towards epilepsy	.05	-.04	.11	1	–
Attitudes towards working with people with epilepsy	-.04	-.17*	.06	.28**	1

*p < .05; **p < .001

Table 4. Correlation matrix showing relationship between independent and dependent variables.

	Symptoms	Time-lines	Consequences	Cure and controllability	Causes	Attitudes towards epilepsy	Attitudes towards working with people with epilepsy
Symptoms	1	–	–	–	–	–	–
Time-lines	.39***	1	–	–	–	–	–
Consequences	.42***	.48***	1	–	–	–	–
Cure and controllability	-.21**	-.14	.06	1	–	–	–
Causes Attitudes towards epilepsy Attitudes towards working with people with epilepsy	-.05 -.28* -.54	-.10 -.25 -.34*	-.29*** -.19* -.51***	-.21 .47* .23**	1 -.02 .16*	– 1 .28***	– – 1

*p < .05; **p < .01; ***p < .001

More specifically, there was a significant positive relationship between attitudes towards working with people with epilepsy and perceptions of epilepsy-related cure and controllability (r = .23, p = .002) and causes (r = .16, p = .038), and a significant negative relationship between attitudes towards working with people with epilepsy and the perceptions of epilepsy-related symptoms (r = -.54, p < .001), time-lines (r = -.36, p < .001), and consequences (r = -.51, p < .001). Finally, attitudes towards epilepsy correlated positively with attitudes towards working with people with epilepsy (r = .28, p < .001).

Regression analysis with attitudes towards epilepsy as dependent variable

The further step in the analysis was to conduct a linear regression analysis to see whether various independent variables (i.e., perceptions of epilepsy-related symptoms, time-lines, consequences, cure and controllability, and causes) predict attitudes towards epilepsy, while also controlling for participants’ age, gender, and education level. The first step in this analysis was to see which control and independent variables correlate with this dependent variable. The reason for the importance of this step lies in the notion that conducting a regression analysis with independent variables that do not correlate with dependent variables is not particularly meaningful (Field, 2009). As mentioned previously, attitudes towards epilepsy did not correlate significantly with any of the control variables, and they revealed a significant correlation with all independent variables except perceptions of epilepsy-related causes. This is why it was deemed useful only to include these variables as predictors in the regression model.

Before reporting the results of the regression analysis, it is important to discuss the degree to which assumptions of the regression analysis have been met, the guideline for which are provided by Field (2009). There was no multicollinearity in the data, which was concluded by finding that none of the Tolerance statistics were below 0.1 and none of the VIF statistics were over 10. Moreover, Durbin-Watson statistic was close enough to the value of 2 to assume that the assumption of no autocorrelation of residuals has been met as well (Durbin & Watson, 1951). The assumptions of linearity and homoscedasticity have been also met, as evident in the finding that the scatterplot of standardized residual on standardized predicted value did not funnel out or curve. Finally, the assumption of normality of residuals was tested by looking at a histogram that tests this assumption, revealing that residuals were normally distributed.

As for the results of the regression analysis, it was revealed that model turned out significant in predicting attitudes towards epilepsy scores (F(4,167) = 16.42, p < .001). The model managed to explain 28.2% of variance in attitudes towards epilepsy scores (R²= .282). Out of all four independent variables, only two were found to predict scores on the dependent variable. In particular, variables that acted as significant predictors were perceptions of epilepsy-related consequences (β = -.15, t = -1.82, p = .040) and cure and controllability (β = .45, t = 6.51, p < .001), whereas variables that did not act as significant predictors were perceptions of epilepsy-related symptoms (β = -.09, t = -1.15, p = .251) and time-lines (β = -.08, t = 1.05, p = .295). Relevant parameters can be seen on Table 5.

Table 5. Regression coefficients with attitudes towards epilepsy as an outcome variable.

Regression

Collinearity statistics

Std. error

Beta

Sig.

Tolerance

VIF

Symptoms

Time-lines

Consequences

Cure and controllability

-.01

-.14

-.13

.38

.01

.13

.07

.06

-.09

-.08

-.15

.45

-1.15

-1.05

-1.82

6.51

.251

.295

.040

.000

.74

.72

.68

.91

1.35

1.40

1.47

1.10

Regression analysis with attitudes towards working with people with epilepsy as dependent variable

The final step in the analysis was to conduct a regression analysis and see whether attitudes towards working with epilepsy can be predicted by a series of independent variables, while also controlling for demographic variables. As it was the case with the previous regression model, it was initially necessary to establish which variables correlate with this dependent variable, so as to know which independent variables to include in the model (Field, 2009). As revealed on Table 3, attitudes towards working with people with epilepsy correlated merely with one control variable, with this being participants’ age. Moreover, this dependent variable correlated with all illness perception variables and with attitudes towards epilepsy (see Table 4). Thus, the choice was to conduct a regression where, in the first model, participants’ age was added as a predictor, and in the second model, predictors added consisted of perceptions of epilepsy-related symptoms, time-lines, causes, cure and controllability, and consequences, as well as attitudes towards epilepsy.

Before reporting the results of the regression, it is initially important to report whether assumptions for this analysis have been met. Findings revealed that since none of the Tolerance statistics were below 0.1 and none of the VIF statistics were over 10, the assumption of no multicollinearity has been met. Furthermore, Durbin-Watson statistic was close enough to the value of 2 to assume that the assumption of no autocorrelation of residuals has been met as well (Durbin & Watson, 1951). The assumptions of linearity and homoscedasticity have been checked by looking at the scatterplot of standardized residual on standardized predicted value. This data points on this scatterplot did not funnel out or curve, thus leading to the conclusion that the assumptions of linearity and homoscedasticity have been met as well. Finally, the assumption of normality of residuals was tested by looking at a histogram that tests this assumption, revealing that residuals were normally distributed.

The results of the actual regression analysis revealed that the first model, which had participants’ age as independent variable, reached significance (F(1,170) = 4.78, p = .030). This model explained 2.7% of variance in attitudes towards working with people with epilepsy scores (R²= .027). Moreover, in this model, participants’ age significantly predicted attitudes towards working with people with epilepsy (β = -.17, t = -2.19, p = .030). In the second model, additional six variables were added as predictors, including perceptions of epilepsy-related symptoms, time-lines, consequences, cure and controllability, causes, as well as attitudes towards epilepsy. This model also succeeded in significantly predicting scores on attitudes towards working with people with epilepsy (F(7,164) = 19.22, p < .001). The model explained 45.1% of variance in attitudes towards working with epilepsy scores (R²= .451). Out of seven independent variables, including participants’ age, four were found to significantly predict dependent variable scores. In particular, attitudes towards working with people with epilepsy could be predicted by participants’ age (β = -.16, t = -2.76, p = .006), perceptions of epilepsy-related symptoms (β = -.33, t = -4.89, p < .001), consequences (β = -.35, t = -4.71, p < .001), and cure and controllability (β = .19, t = 2.74, p = .007). Independent variables that did not act as significant predictors were perceptions of epilepsy-related time-lines (β = -.02, t = .22, p = .825), causes (β = .09, t = 1.38, p = .169), and attitudes towards epilepsy (β = .03, t = .39, p = .699). Relevant parameters for this regression analysis can be seen on Table 6.

Table 6. Regression coefficients with attitudes towards working with people with epilepsy as outcome variable.

Model		Regression					Collinearity statistics
		B	Std. error	Beta	t	Sig.	Tolerance	VIF
1 2	Age Age Symptoms Time-lines Consequences Cure and controllability Causes	-.00 -.00 -.02 -.01 -.14 .07 .05	.00 .00 .01 .05 .03 .03 .04	-.17 -.16 -.33 -.02 -.35 .19 .09	-2.19 -2.76 -4.89 -.22 -4.71 2.74 1.38	.030 .006 .000 .825 .000 .007 .169	1.00 .99 .73 .71 .62 .70 .87	1.00 1.01 1.37 1.41 1.61 1.43 1.15
	Attitudes towards epilepsy	.01	.03	.03	.39	.699	.72	1.40

Discussion

The present study was based on few important gaps in the literature on epilepsy-related stigmatization. In particular, it was recognized that, although various studies investigated the consequences of stigmatization of people with epilepsy, further recognizing that stigmatization can result in discrimination in employment, housing, and the provision of insurance settings (World Health Organisation, 1999; Baskind & Birbeck, 2005; Earnshaw & Quinn, 2012), no research focused on the discrimination in the work-place settings. Moreover, it was established that, although studies focused on investigating illness perceptions of people with epilepsy themselves, thus recognizing that such perceptions impact their coping and recovery (Green et al., 2004; Goldstein et al., 2005), no empirical research focused on investigating epilepsy-related illness perceptions held by other people. Combining these two perceived gaps in the literature, the present research sought to establish whether epilepsy-related illness perceptions held by other people predict attitudes towards epilepsy and towards working with people with epilepsy. The importance of such a research goal is evident in the notion that other people may often hold erroneous beliefs about chronic illnesses, as well as that individuals with epilepsy, like any other individuals, necessitate stable jobs where they will be appreciated by their colleagues (Goldstein et al., 2005). On the basis of the reasoning that stems from current literature, the present study hypothesized that (1) more accurate perceptions of epilepsy-related symptoms, time-lines, consequences, cure and controllability, and causes will be positively related to and will furthermore predict more positive attitudes towards epilepsy and more positive attitudes towards working with people with epilepsy, and that (2) more positive attitudes towards epilepsy will be positively related to and will furthermore predict attitudes towards working with people with epilepsy.

In order to discuss the results obtained in the present research, this section initially focuses on summarizing the main results of the research, by relating them to the pre-set hypotheses. The focus then moves on discussing the obtained results, why they have occurred, what they imply, and how they relate to the literature. Following sub-sections outline main limitations of the study and recommendations for future research.

Summary of findings

The first set of hypotheses in the present research stated that perceptions of epilepsy-related symptoms, time-lines, consequences, cure and controllability, and cases will be positively related to and will furthermore predict attitudes towards epilepsy and towards working with people with epilepsy. In relation to the relationship between such perceptions and attitudes towards epilepsy, the results revealed that these attitudes showed a negative relationship with perceptions of epilepsy-related symptoms, time-lines, consequences, and cure and controllability, and they displayed a positive relationship with perceptions of epilepsy-related causes. However, results of the regression analysis further revealed that attitudes towards epilepsy can be predicted merely by perceptions of epilepsy-related consequences and cure and controllability. The hypotheses that relate to attitudes towards epilepsy were therefore confirmed only partially, indicating that only some perceptions predict such attitudes. However, what is important to note is that it was hereby hypothesized that more accurate (i.e., higher) epilepsy-related perceptions will relate to and predict more positive (i.e., higher) attitudes towards epilepsy. This, however, did not turn out to be the case. Attitudes towards epilepsy were negatively related to all perception variables except the perceptions of causes. This finding deserves an explanation, which will be addressed in the following section of the paper.

In regards to the relationship between epilepsy-related perceptions and attitudes towards working with people with epilepsy, results showed a negative relationship between these attitudes and perceptions of symptoms, time-lines, and consequences, and a positive relationship with perceptions of cure and controllability and causes of epilepsy. However, it was hypothesized that there will be a positive relationship between all these variables. There was also a positive relationship between attitudes towards epilepsy and attitudes towards working with people with epilepsy, which was in line with what was hypothesized. Regression analysis further revealed that, out of all these variables, only perceptions of epilepsy-related symptoms, consequences, and cure and controllability predicted attitudes towards working with people with epilepsy, while controlling for participants’ age. These findings also deserve an explanation.

Explanation of findings

The first obtained result that needs to be explained relates to the negative relationship between attitudes towards epilepsy and perceptions of epilepsy-related symptoms, time-lines, consequences, and cure and controllability. In the present research, it was hypothesized that such variables will correlate positively with attitudes towards epilepsy, because it was argued that the more accurate perceptions people have, the more positive they will feel about epilepsy. However, it seems that when people are aware of the seriousness of epilepsy-related symptoms, time-lines, consequences, and cure and controllability, they are more likely to feel anxious, afraid, depressed, or angry when they think about epilepsy. There is a possibility that this is happening exactly because people perceive the seriousness of the condition. In particular, the heightened awareness of the complexity of the condition, its life-time duration, it’s devastating consequences on the patient, and the recognition that there is no cure for epilepsy may make individuals experience a variety of negative emotions and attitudes towards the condition. The finding that attitudes towards epilepsy correlate positively only with the perceptions of causes of epilepsy may point to the notion that understanding that such a condition develops due to factors that cannot be controlled for, rather than due to factors that would point towards the patients’ role in the development of the illness, may make individuals feel more at ease with epilepsy. Thus, it could be that perception of the seriousness of the illness lead individuals to have more negative attitudes towards it, while the understanding that patients cannot control the development of their illness may lead people to have more positive attitudes towards it. Finally, the finding that more negative attitudes towards epilepsy can only be predicted only by accurate perceptions of epilepsy-related consequences and cure and controllability may point to the notion that these perceptions indicate the seriousness of the illness the most, thus determining attitudes towards epilepsy the most.

The second finding that deserves an explanation relates to the negative relationship between attitudes towards working with people with epilepsy and the perceptions of epilepsy-related symptoms, time-lines, and consequences. It was hypothesized that accurate perceptions will make individuals more open towards working with people with epilepsy – however, this occurred only with the perceptions of epilepsy-related causes and cure and controllability. It is possible that people will not be more open towards collaborating with epileptic individuals when they understand the seriousness of their symptoms, duration of the illness, and devastating consequences. Such perceptions of the seriousness of the condition may make individuals more concerned regarding the possible role they may need to have in case-patients exhibit symptoms during work. Understanding that their symptoms are severe, that they are expected to last for a long time, and that patients can have serious personal consequences due to the illness may lead individuals to be cautious regarding sharing their workspace with a patient. However, an accurate understanding of the notion that patients are not personally responsible for developing the illness, as well as that although epilepsy cannot be cured it can be controlled, may make individuals feel more at ease with working with an epileptic person. This is because they may feel more sympathy towards them due to the “bad luck” for developing the condition and due to the fact that the illness can be controlled. Moreover, the finding that it was only the perceptions of epilepsy-related symptoms, consequences, and cure and controllability that predicted attitudes towards working with people with epilepsy can be explained by noting that the seriousness of symptoms and consequences may be perceived as most threatening while working with someone who has epilepsy, whereas the possibilities for controllability are perceived as most useful for making individuals feel at ease to work with someone with epilepsy. Finally, the findings revealed that more positive attitudes towards epilepsy relate to more positive attitudes towards working with people with epilepsy, which is in line with what was hypothesized. However, attitudes towards epilepsy did not predict attitudes towards working with people with epilepsy, therefore showing that this is not a variable that matters much in the work settings.

Limitations and recommendations for future research

While explaining the obtained results, it is possible to restore to the above-presented reasoning. However, it is also possible to attribute some of the unexpected findings to the limitations of the research. In particular, there is one important limitation that could have affected the results, therefore leading to at least some of the hypotheses not being confirmed. Given that the researcher did not collect the data personally, but the data instead originated from an already existing dataset, it is possible that the final scores on various illness-perceptions variables were not scored correctly. The researcher did not have guidelines on how to score the questionnaire but had to rely on the general knowledge of epilepsy, which was obtained from the literature, to deduce which epilepsy-related perceptions are accurate or not. The possibility that some of the variables were not scored correctly can be seen in the notion that not all epilepsy-related perceptions correlated positively with each other. It should be expected, for example, that more accurate perceptions of epilepsy-related causes should relate to more accurate perceptions of epilepsy-related consequences and cure and controllability, however, this was not always the case. For this reason, it seems legit to assume that at least some of the scoring was not completed accurately. Future research should therefore seek to overcome this limitation by completing more accurate scoring of the Illness Perception Questionnaire, which is modified for epilepsy-related purposes. Once it is ensured that all final scores are calculated correctly, it will be possible to determine exact relationships between various epilepsy-related perceptions and relevant attitudes.

Conclusion

In conclusion, the present research sought to establish whether accurate perceptions of epilepsy-related symptoms, time-lines, consequences, causes, and cure and controllability relate to and furthermore predict attitudes towards epilepsy and attitudes towards working with people with epilepsy, as well as whether attitudes towards epilepsy relate to and furthermore predict attitudes towards working with people with epilepsy. Findings supported the pre-set hypotheses only partially. In particular, it was found that attitudes towards epilepsy relate negatively to the perceptions of symptoms, time-lines, consequences, and cure and controllability, and relate positively to the perceptions of causes. However, only perceptions of consequences and cure and controllability significantly predicted attitudes towards epilepsy. Moreover, attitudes towards working with people with epilepsy correlated negatively with the perceptions of epilepsy-related symptoms, time-lines, and consequences, and positively with perceptions of causes and cure and controllability. However, only perceptions of causes and cure and controllability significantly predicted these attitudes. Finally, attitudes towards epilepsy related positively to but did not predict attitudes towards working with people with epilepsy. These findings can be explained either by noting which perceptions impact attitudes and which do not, or by attributing them to the limitations of the research.

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Appendices

Appendix A: Risk Assessment Form

A brief outline of

work/activity:

The purpose of this study is to highlight the importance of positive attitude toward epileptic patients as they feel discomfort in front of the other, which related with avoidance and concerns about disclosing their problem, and fear of stigmatization. As they struggle with the severe neurological disease, the negative attitude toward them may result in serious problems as well. It is expected there will be an association between epilepsy and people’s negative attitudes toward them.

Location:

Southampton University

Significant hazards:

The questionnaire is not including the questions or anything that may give any distress or harm to the participants. However there is a small chance that the participants may develop distress when they will answer to the questions about epilepsy, as it is unknown how much they are sensitive to the related topic, is there anyone in their environment who suffers from epilepsy. The consent form and information sheet will make it clear that participants may withdraw at any time with no negative consequences.

Who might be exposed to the hazards:

Should they feel distressed, participants will be advised to contact their GP or local therapy service or support group?

Existing control measures

The consent form and information sheet will make it clear that participants may withdraw at any time with no negative consequnces

Are risks adequately controlled: YES/NO

If NO, list additional controls and actions required:

Additional controls:

Action by:

Appendix B: Epilepsy Stigma Questionnaire

What is your age? ______________________

Specify your Gender F M

Please, indicate the highest level of education you have achieved

We are interested in your attitudes toward the people who are suffering from epilepsy.

YOUR VIEWS ABOUT EPILEPSY.

Listed below are a number of symptoms that people who are suffering from epilepsy may or may not have experienced since their illness. Please indicate by circling YES or NO, whether they have experienced any of these symptoms since their illness, and whether you believe that these symptoms are related to epilepsy.

These symptoms are related to epilepsy

Sore throat	Yes	No
Pain	Yes	No
Fatigue	Yes	No
Seizures	Yes	No
Infections	Yes	No
Headaches	Yes	No
Sleep difficulties	Yes	No
Loss of Strength	Yes	No
Skin moles	Yes	No
Dizziness	Yes	No
Aura (strange sensation of the body)	Yes	No
Loss of consciousness	Yes	No
Convulsions (Uncontrollable jerking movements of arms and legs)	Yes	No
Temporary confusion	Yes	No
A staring spell	Yes	No
Twitching of part of the body	Yes	No
Memory Difficulties	Yes	No

Please indicate how much you agree or disagree with the following statements about the illness by ticking the appropriate box.

	View about Epilepsy	Strongly disagree	Disagree	Neither disagrees nor agree	Agree	Strongly agree
1	Epilepsy will last a short time
2	Epilepsy will last for a long time
3	Epilepsy will pass quickly
4	I expect epilepsy to last for the rest of a person’s life
5	Epilepsy is likely to be permanent rather than temporary
6	Epilepsy is very unpredictable
7	The symptoms come and go in cycles
8	People with epilepsy go through cycles in which epilepsy gets better and worse
9	Epilepsy has serious financial consequences
10	Epilepsy strongly affects the way patients see themselves as a person
11	Epilepsy causes difficulties to those close to them
12	Epilepsy is a serious condition
13	The course of epilepsy depends on the patient
14	The patient has the power to influence the epilepsy
15	What you do can determine whether epilepsy gets better or worse
16	The negative effects of epilepsy can be prevented (avoided) by the treatment
17	The treatment can control epilepsy
18	Treatment will be effective in curing epilepsy
19	Epilepsy is a mystery to me
20	I don’t understand epilepsy
21	The symptoms of the condition are puzzling to me
22	When I think about epilepsy I get upset
23	I get depressed when I think about epilepsy
24	Epilepsy makes me feel afraid
25	Thinking about having epilepsy makes me feel anxious
26	Epilepsy makes me feel angry

CAUSES OF Epilepsy

We are interested in what you consider may have been the cause of Epilepsy. As people are very different, there is no correct answer for this question. We are most interested in your own views about the factors that caused epilepsy rather than what others including doctors or family may have suggested to epileptic patients. Below is a list of possible causes of epilepsy. Please indicate how much you agree or disagree that they were causes for you by ticking the appropriate box.

	Possible causes	Strongly disagree	Disagree	Neither agrees nor disagree	Agree	Strongly agree
1	Stress or worry
2	Heredity – it runs from the family
3	A germ or virus
4	Diet or eating habits
5	Chance or bad luck
6	Poor medical care in the past
7	Pollution in the environment
8	Their own behaviour
9	Mental attitude e.g. thinking about life negatively
10	Family problems or worries caused epilepsy
11	Overwork
12	Emotional state e.g. feeling down, lonely, anxious, empty
13	Ageing
14	Alcohol
15	Smoking
16	Accident or injury
17	Their personality
18	Altered immunity

In the table below, please list in rank order the three most important factors that you now believe caused EPILEPSY. You may use any of the items from the box above, or you may have additional ideas of your own.

The most important causes for you:

______________________________________________________________

______________________________________________________________

______________________________________________________________

Working with people with Epilepsy

Please read the scenario below and answer the following questions in relation to the person in the scenario.

“A 21-year-old woman was recently transferred into your department and efficiently carries out her work. You eventually find out that she was referred to your department for employment by the local epilepsy foundation. She leaves early about once every 2 months, which she states is for a doctor’s appointment”.

Now that you know she has epilepsy, how are you feeling about interacting with her
Much more anxious
Somewhat more anxious
No change
Less anxious

How worried are you that she will display sudden, unpredictable behavior?
Very worried
Somewhat worried
Not worried at all

To what degree do you feel that she could have avoided getting the illness
Very much
Somewhat
Not at all

Now that you know she has epilepsy, do you think you realized it before?
Yes
No

How comfortable would you feel providing first aid for this person?
Very comfortable, would not bother me at all
Somewhat comfortable
Very uncomfortable, would bother me considerable

How much do you think her epilepsy will affect the ability to do her job?
Not at all, her illness will not interfere with her ability to do her job
Some effects are her ability to do her job
Her illness will greatly interfere with her ability to do her job

How comfortable would you feel with her talking about her epilepsy?
Very comfortable, I’m open to talking with her about epilepsy
Somewhat comfortable
Very uncomfortable, I would prefer not to talk to him/her about epilepsy

How comfortable would you feel doing each of the following with this person?

8.1)-Sharing an office

Very comfortable
Somewhat comfortable
Very uncomfortable

8.2)-Working on a work-related/team project together

Very comfortable
Somewhat comfortable
Very uncomfortable

8.3)-Eating lunch together

Very comfortable
Somewhat comfortable
Very uncomfortable

8.4)-Participating in social activities together (nonworking hours), going to movies, etc.

Very comfortable
Somewhat comfortable
Very uncomfortable

Appendix C: Consent Form

Please read this information carefully before deciding whether to take part in this research. You will need to indicate that you have understood this information before you can continue. You must also be aged over 16 to participate. By ticking the box at the bottom of this page and clicking ‘Continue’, you are consenting to participate in this survey.

We have tried to ensure that the questions in this study do not cause any distress. However, it is not uncommon to experience some anxieties or concerns when completing questionnaires about stigma towards epilepsy and support is available. If participating in this study raises any issues for you, we recommend that you contact one of the following resources:

Your local GP (for UK residents)
Your private doctors, counselling service, nightline which offer your country
If you have any future questions or comments about the study, please contact Gumru Sharifova on gs7g14@soton.ac.uk

Statement of Consent

I have read and understood the information about this study. In consenting, I understand that my legal rights are not affected. I also understand that data collected as part of this research will be kept confidential and that published results will maintain that confidentiality. I finally understand that if I have any questions about my rights as a participant in this research, or if I feel that I have been placed at risk, I may contact the chair of the Ethics Committee, Psychology, University of Southampton, SO17 1BJ, UK. Phone: +44 (0)23 8059 3856, email fshs-rso@soton.ac.uk

I certify that I am 16 years or older. I have read the above consent form and I give consent to participate in the above-described research.

I have read and understood the information sheet

and have had the opportunity to ask questions about the study

I agree to take part in this research project and agree for my data to

be used for the purpose of this study

I understand my participation is voluntary and I may withdraw

at any time without my legal rights being affected

Appendix D: Participant Information Sheet

Please read the information carefully before deciding to take part in this research. If you are happy to participate you will be asked to sign a consent form.

What is the research about?

The research is a dissertation for academic qualification. I am an MSc student from clinical psychology department and I am trying to investigate stigma towards epilepsy in order to reduce, prevent stigma, educate people about it and increase a quality of life who suffer from epilepsy.

The purpose of this study is to highlight the importance of positive attitudes toward people who suffer from epilepsy; as discrimination, ignorance, and stigmatization have an adverse impact on individuals with epilepsy in a sense that they cannot find jobs, maintain their treatment, start a family and so on. This kind of problems decreases the quality of their life. It is important to eliminate the stereotyping of “Mental illnesses” or “cognitive dysfunction” about epilepsy and educate people in a sense that they can understand epilepsy well. As people who suffer from epilepsy struggle with the severe neurological disease, the negative attitude toward them may result in serious problems as well. Besides all these reasons the study aims to determine awareness and knowledge regarding epilepsy and stigma among the general population who use social media. It is expected there will be an association between epilepsy and people’s negative attitudes toward them.

The survey includes four parts, which three of them were undertaken in order to develop Revised Illness Perception Questionnaire (IPQ-R) for healthy individuals, and the other part was undertaken from the Reaction to Epilepsy in the Workplace’s surveys, which consists of a vignette. The vignette includes eight questions that aim to gather information on how comfortable people feel when to interact with epilepsy subject.

Why have I been chosen?

Participants have been chosen from social media (Facebook) because it is easy to reach a big sample size. Any adult over the age 18 with fluent English is eligible to take part.

What happens if I change my mind?

Participants may withdraw at any time with no negative consequences

Are there any benefits in my taking part?

There may be no direct benefit for participants, but if you will participate you may support a research, which is related with Epilepsy.

Are there any risks involved?

The Questionnaires will not include questions or anything that may cause any distress or harm to the participants

Will my participation be confidential?

The study will be conducted according to the British Psychological Society guidelines. For this study, the research will start after Southampton university ethic committee approve of the research. The main ethical considerations will be prevented as much as possible. One of the main consideration is anonymity of the participants, which will be maintained by not asking any identifying characteristics. The Questionnaires will not include questions or anything that may cause any distress or harm to the participants. The consent form and information sheet will make it clear that participants may withdraw at any time with no negative consequences. The data coded and kept on a password protected computer.

What happens if something goes wrong?

Please contact:

The Chair of the Ethics Committee, School of Psychology, University of Southampton: +44(0) 23 8059 4663
Your GP

Appendix E: Debriefing Statement

Thank you for your participation!

The purpose of this study is to highlight the importance of positive attitudes toward people who suffer from epilepsy; as discrimination, ignorance, and stigmatization have an adverse impact on individuals with epilepsy in a sense that they cannot find jobs, maintain their treatment, start a family and so on. This kind of problems decreases the quality of their life. It is important to eliminate the stereotyping of “Mental illnesses” or “cognitive dysfunction” about epilepsy and educate people in a sense that they can understand epilepsy well. As people who suffer from epilepsy struggle with the severe neurological disease, the negative attitude toward them may result in serious problems as well. Besides, all these reasons the study aims to determine awareness and knowledge regarding epilepsy and stigma among the general population who use social media. It is expected there will be an association between epilepsy and people’s negative attitudes toward them.

The anonymity of the participants, which will be maintained and the Questionnaires will not include questions or anything that may cause any distress or harm to the participants. In a case, if they feel distressed, participants will be advised to contact their GP or local therapy service or support group. The consent form and information sheet will make it clear that participants may withdraw at any time with no negative consequences.

We hope the study did not cause any distress, however, if you have any concerns please contact with:

Your local GP (for UK residents)

Your private doctors, counselling service, nightline which offer your country

If you have any future questions or comments about the study, please contact Gumru Sharifova on gs7g14@soton.ac.uk

If you have any questions about your rights as a participant or you feel that you might have placed at risk, please contact the Chair of the Ethics Committee, School of Psychology, University of Southampton: +44(0) 23 8059 4663

Appendix F: Acknowledgements

I would like to thank my supervisor, Dr. Sarah Kirby for all of the support and guidance that she offered me over two academic years. I would like to thank her that she motivated and supported me during hard times that I experienced. Additionally, I would like again thanking Dr. Kirby that she patiently taught me how to write a research proposal, what are the research and all research related stuff.

STIGMA TOWARD EPILEPSY

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