Epilepsy Research Papers
Introduction
The aim of this paper is to identify the concepts of labelling and stigma, and how they affect the lives of people with epilepsy. Epilepsy is a chronic physical disorder that affects the brain and causes repeated seizures. 500,000 people, or 1 in 100 of the population, in the UK are epileptic. Epilepsy can develop at any age, although it normally starts in childhood. Although there is no treatment to cure epilepsy, in 70% of cases anti-epileptic drugs (AEDs) successfully control seizures. The disorder affects the lives of individuals with epilepsy (IWE) in many practical ways, such as driving restrictions, potential difficulties with pregnancy and caution with alcohol consumption. There is advice and support, along with …show more content…
AEDs and other treatments, available to help epileptics manage these factors in order to cope with the detrimental effect on their lives (NHS,2012). One of the factors that is perhaps less obvious is the impact of coming to terms with the label of epilepsy, the effects of the stigma that it gives rise to, and how this can be reduced.
Discussion
In order to examine the concepts of stigma and labelling it is essential to understand how society is constructed. It is necessary to look at how social construction of labels and the existence of inequalities of power within a society contribute to the formation of stigma and its effect on the lives of epilepsy patients.
The sociological imagination is fundamental to the social construction on which stigma is based.
It looks at the interaction between 'private troubles ' and 'public issues ', and takes into account the factors within a particular society which determine the experience of the individual and the role that they 'act out '. The sociological imagination is a way of thinking about how people view themselves in relation to others, and how these individual perspectives culminate to form both the self-identity, a perceived insight (correct or incorrect) of how other people perceive another individual, and how these culminate to produce majority attitudes, which vary over time and in different cultures (Wright Mills,1959). This forms the foundation of assumptions of 'normality ' in each particular society (Rosenhan,1972), that stems from the common and therefore dominant attitudes of the majority. This is the basis for how the role of the individual is constructed depending on certain aspects, for example their gender or ethnic identity. This leads to an expectation of behaviour patterns, which individuals then ‘act out’, consciously or unconsciously in order to conform to this particular role. Differences between people exist, but not all differences are identified as negative in all cultures. For example, moderate alcohol consumption in the UK is considered acceptable behaviour, although not everyone participates for various reasons, most notably religion, but in some …show more content…
cultures drinking alcohol is unacceptable and illegal in certain countries. (Berger&Luckmann,1967).
Non conformity to this social norm can be viewed as deviance. Deviance signals behaviours or characteristics for which the non-conforming person is held responsible and therefore implicates an element of blame (Scrambler,2003). Chronic illness began to be considered in society as deviant behaviour with the increase in medicalization, which, according to Zola (1972) gave medicine more of a control over everyday life. Illich (1975) examines iatrogenesis, of which the factor most relevant to this discussion is the sometimes unnecessary labelling of illness. Although in epilepsy labelling can be positive with regard to provision of beneficial treatment, it is essential to firstly to discuss how the escalation of medical labelling as a whole forms the basis for regarding chronic illness as deviant behaviour. The idea that medicalization made it possible for people without a genuine illness to take advantage; and act as though they were ill, to avoid contribution to society, was recognised by Talcott Parsons (1951). He conceptualized the sick role: a set of rules which, if adhered to allow an ill person to legitimately take time out from their contribution to society in order to recover. However chronic illness such as epilepsy is not cured, only managed (to different extents, depending on the patient). Due to this, individuals with a chronic illness are unable to conform to the rules of the sick role and are therefore labelled as deviant (Parsons,1951).
One aspect of the social construction of illness is that there are differences between illnesses in the way that they are perceived; this varies between cultures, and over time. Social control by means of diagnosis by a medical professional allocates a label to the sufferer, and influences the way in which they are viewed by others and their perception of themselves. Societal assumptions or lay beliefs are attached to different diseases in order to make sense of them. The combination of these factors leads to some illnesses being viewed as deviant and therefore stigmatised (Conrad&Barker,2010). Although deviance is applicable to epilepsy in the element that IWE are seen/or see themselves as possessing a characteristic different from societal norms, deviance in this respect does not signal blame (Scrambler,2009). An example of chronic illness where deviance could signify blame is lung cancer, which has become more stigmatised in correlation with the rise in anti-smoking awareness and therefore seen to be self-inflicted (Chapple&Ziebland,2004).
Goffman (1963) has conceptualised stigma as the culmination of deviance and negative labelling. A person is stigmatised when their label causes them to be perceived as having a detrimental attribute which separates them from social norms. Stigma implies loss of status and self-worth, belittling the stigmatised person and transforming them into a devalued individual (Goffman,1963). In some cases of chronic illness diagnosis and the accompanying label are welcomed. In one qualitative study of rheumatoid arthritis many participants were relieved to finally understand their symptoms and felt no shame attached to the label (Radford et al.2008). In the case of most IWE, the official label of epilepsy is not welcomed but perceived as negative and unwanted (Scrambler&Hopkins,1986). The label is difficult to remove; this 'stickiness ' is a contributing factor to negative feelings surrounding diagnosis (Rosenhan,1959) and in interactions with the physician assigning the label IWE may attempt to negotiate as a way of rejecting the diagnosis (Scrambler&Hopkins,1986). This initial reaction was found to commonly stem from preconceived misconceptions about epilepsy by IWE, which reflects general misconceptions and lack of knowledge of the illness in society. In a qualitative study by Kilinç and Cambell (2009) the majority of reactions to diagnosis, from IWEs, who were diagnosed in adulthood, were negative. The reasons were that they felt the label confirmed that they were ‘rejects’ or ‘odd’, and some referred to the lay belief that IWE were ‘slow’ due to the misguided link with mental illness. This demonstrates that there is a lack of knowledge surrounding epilepsy which leads to the label being perceived as devaluing or discrediting, giving epilepsy a stigmatized status (Goffman,1963).
As a direct result of the diagnosis of chronic illness secondary deviation is often a consequence. The recipient of the label feels an instant disruption to their biography on being diagnosed and responds by succumbing to this new societal role (Scrambler,2003).
Stigma can be categorised at discredited or discreditable. Discredited features are those which are visible, such as facial disfigurement (Goffman,1963). This induces a range of reactions from other people from verbal abuse to more commonly intrusive acts such as staring and sympathy, which although well intentioned is still a form of stigma, for which coping mechanisms are used. Impression management is the coping tool whereby people with a discredited attribute alter their behaviour; or their appearance to neutralise the negative effect of the characteristic (Bonnano&Esmaelib,2012).
Discreditable characteristics are not physically visible, and only have the potential to be stigmatised (Goffman,1963). Epilepsy has been categorised as a discreditable, and described as a hidden form of stigma, which creates the dilemma of whether or not to disclose their illness. Information management is normally used as a coping mechanism to hide their condition from employers, acquaintances and even spouses, resulting in self restriction of life opportunities in order to minimise the risk of being discovered (Scrambler,2009).
Scrambler and Hopkins (1986) went on to make a distinction between enacted and felt stigma termed the Hidden Distress Model. Enacted stigma is more common with discredited illnesses; with epilepsy stigma is only enacted in the circumstance that other people are made, or become, aware of the epileptic status. In this situation there is potential for the stigma to be enacted (actual discrimination becomes possible) (Scrambler,2003). Discrimination is dependent on relationships of unequal power within society (Link& Phelan,2001). Marx examined this power relationship with regard to social inequalities in society. The exploitation of labour was only possible due to the rich and upper class controlling wages of employees, who were not in a position to have any influence over decisions. It is the same principle when related to stigma. In the workplace an employer may feel that it is a risk to employ an IWE due to belief that the illness will affect their ability to carry out the role, even if this is not the case. If the employer makes a judgement to hire or not to hire based on the medical condition when it is irrelevant to the role then this is an instance of discrimination. For example, in one form of epilepsy the IWE will only suffer from seizures at night, therefore if the job is in the day time this would not affect the performance of the employee (Epilepsy Action,2013).
Although there have been incidences of discrimination against IWE there is no conclusive research to show that there is a consistent trend for this. In research based on interviews with the lay public it is evident that the attitudes to those with epilepsy have improved and are generally positive (Scrambler&Hopkins,1986).
Felt stigma has a much more prominent effect on the lives of discreditable illness than enacted stigma. It is the fear of encountering prejudice and stigmatisation, and also the feeling of shame associated with the label. Due to invisibility of epilepsy, change of attitude, and subsequently, behaviour has an impact on social interactions and personal relationships (Scrambler&Hopkins, 1986).
In the case of the IWE, once labelled, the correct or incorrect preconception that epilepsy is stigmatised by others allows them to form the belief that they are different and somehow inferior. Qualitative studies have shown that IWE have a tendency to become less confident and opinionated, and less likely to participate in social events. In extreme cases some admitted to becoming reclusive: “I’m practically a hermit” (Kilinç&Cambell,2009). Often the fear of being exposed to enacted stigma, and the stress of concealment is more problematic than occasions when disclosure has occurred. Interviews with IWE revealed that the majority only disclose their condition when it is absolutely necessary, and most could not recall negative incidents of enacted stigma. The assumption that prejudices exist against people with epilepsy was rife but appeared to have little evidence to substantiate it (Scrambler and Hopkins,1986).
Schneider and Conrad (1983) theorized the different ways that IWEs use information management to adapt to their condition. They describe three different ways in which the ‘adjusted’ individuals neutralised stigma: The ‘pragmatic type’ only disclose when absolutely essential; the ‘secret type’ go to great lengths to conceal their epilepsy, and the ‘quasi-liberated type’ exercise a tactic of de-stigmatization, openly proclaiming their status in order to reject discredit. When an individual is classed as unadjusted the label of epilepsy has ‘master status’ (Lemert,1961), it becomes the central trait which overrides other aspects of the individual 's identity, not only from the perspective of other people but also from the individual him/herself.
Concealment is often derived from the influence of ‘stigma coaching’ by parents (and some well-meaning doctors) who discourage talking openly about epilepsy. Although the intention is to protect the child from enacted stigma, and perhaps also to divert courtesy stigma (stigma by association with the IWE), this only serves to elevate the need to conceal and hence increases felt stigma (Schneider&Conrad,1980).
Studies have shown that negative labelling of patients does exist in health care environments. Felicity Stockwell (1972) found that patients who were less popular than others received a lower standard of care. In particular, patients who were in hospital for a long time, or had repeat visits were not seen favourably, this is resonant with sufferers of chronic illness attracting stigma. Patients with complex problems, including psychosocial elements were also viewed negatively by healthcare professionals, being referred to as ‘rubbish’(Jeffrey,1979). This supports concepts put forward by Link and Phelan (2001) that stigma and negative labelling are an institutional problem .Their conceptualizations put emphasis on identifying where the responsibility for the problems and effects of stigma lies. The label is something that is affixed to the individual, a mark that affects how other people identify them. Therefore, in order to tackle the psychosocial issues that stem from stigma it is important to target those who stigmatise and not the stigmatised individuals. This dictates that the overall prescription for action is to change the attitudes of society as a whole.
Practical recommendations for how to achieve this include focus on particular groups (Link&Phelan,2001). For example the government initiative to target hiring practices: ‘Positive about disable people’ have been successful in increasing employment in stigmatized groups by encouraging employers to guarantee interviews for those with chronic illnesses who meet the necessary requirements. For IWE, although this could be reassuring, there is no need to disclose that they suffer from epilepsy unless it would affect their ability to perform (Epilepsy Action,2014). However, It is a step in the right direction in reducing the need to conceal the condition, thereby potentially reducing felt stigma.
Nurses provide care for people with a range of chronic illnesses. An understanding of how patients cope with stigmatizing conditions is crucial for nurses who aim to deliver high quality patient care (Joachim&Acorn,2001). There are several factors for a student nurse to take into practice which will aid in providing the best quality of care for chronically ill patients potentially affected by stigma. One of the most fundamental considerations is to treat the patient as an individual (NMC,2008). This encompasses not only the practical aspects of care but seeing each patient as a whole person and ensuring that a holistic approach is taken. An understanding of visible and invisible stigma, and the ways in which these can affect a person’s life allow for a greater degree of empathy.
It has been mentioned that health care professionals can act as stigma coaches, inadvertently encouraging patients to conceal their illness. This can be avoided by awareness of stigma surrounding chronic illness and application of appropriate communication, the importance of which is stressed in the NMC Code of Conduct (2008). Guiding the patient in their own attitude towards the disease by talking openly, honestly and professionally with the patient and using the correct terminology such as ‘epilepsy’, instead of euphemising will reinforce and reassure that there is nothing to be ashamed of, contributing to reducing felt stigma.
Competence, one of the six Cs of nursing (NMC,2008) signifying having knowledge of Anti-Epileptic Drugs, and alternative treatments, is essential for best practice, and a good foundation for making educated referrals to specialists such as dieticians. The ability to confidently discuss different choices that the epileptic patient has available in order to manage the illness, will in turn make the patient more confident in talking about their condition and allow them to independently and actively take control of how it effects their daily life, therefore acting to combat felt stigma. One specific example is the NHS Expert Patient Programme which not only aims to improve confidence but also provides a social forum for discussion with patients who may also be affected by stigma.
Conclusion
The concepts of the sociological imagination and how society is constructed are fundamental in order to gain a comprehensive perspective on the construction of illness in society. From this, deviance and negative labelling create different types of stigma associated with chronic illnesses. It is essential to recognise how visible and invisible stigmas are manifested, the coping techniques that individuals adopt, and the detrimental effect on their lives. This gives an insight into changes that need to be made on a personal and institutional level, most poignantly in the health care setting, in order to reduce stigma in society.
To provide high quality and holistic care in practice it is important to be aware of the origins of stigma and negative labelling, as well as the way that they can affect patient’s lives. A student nurse should adhere to NMC guidelines, in particular maintaining a non-judgemental attitude, avoiding assumptions based on socially perceived stereotypes and valuing each patient as an individual. This is not only applicable to patients with a potentially stigmatizing illness, as stigma, labelling, and discrimination affect individuals based on a multitude of factors from ethnicity, to gender, to age and social status to name but a few.
References
Berger P and Luckmann T (1967). The Social Construction of Reality. Doubleday: Garden City
Bonannoa A and Esmaelib B (2012). Facial Disfigurement, Stigma, and Cancer: Interaction Between Patients and Members of Secondary Groups. Sociological Spectrum: Mid-South Sociological. 32(2): 138-156 DOI:10.1080/02732173.2012.646156 [Accessed 03 January 2014]
Chapple A and Ziebland S (2004), Stigma shame and blame experienced by patients with lung cancer: a qualitative study, British Medical Journal, 328 (7454): 1470
DOI: 10.1136/bmj.38111.639734.7C [Accessed 04 December 2013]
Conrad P and Barker K (2010). The Social Construction of Illness: Key Insights and Policy Implications, Journal of Health and Social Behaviour 51(1): 67 - 79
DOI: 10.1177/0022146510383495 [Accessed 04 December 2013]
EpilepsyAction. Epilepsy Information and Advice [website] (2014). Available at: www.epilepsy.org.uk [Accessed 03 January 2014]
Goffman E (1963).
Stigma: Notes on the management of spoiled identity. Penguin: St Ives
Joachim G and Acorn S (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing. 32(1): 243-248.
DOI: 10.1046/j.1365-2648.2000.01466.x [Accessed 07 January 2014]
Johnson M and Webb C (1995). Rediscovering unpopular patients: the concept of social judgment. Journal of Advanced Nursing 21(3): 466–475
DOI: 10.1111/j.1365-2648.1995.tb02729.x [Accessed 04 December 2013]
Kilinç, S and Campbell, C (2009). “It shouldn’t be something that’s evil, it should be talked about”: A phenomenological approach to epilepsy and stigma. Seizure. Vol.18(10): 665-671
DOI: 10.1016/j.seizure.2009.09.001 [Accessed 03 January 2014]
Link P and Phelan J (2001). Conceptualizing stigma. Annual Review of Sociology 27(1): 363 – 385 DOI: 10.1146/annurev.soc.27.1.363 [Accessed 04 December 2013]
NHS Choices [website] Available at: www.nhs/conditions/epilepsy [Accessed 27 December 2013]
Nursing and Midwifery Council (2008). Code of Professional Conduct. London: NMC
Parfene C, Stewart T, Tricia Z. King T (2009). Epilepsy stigma and stigma by association in the workplace. Epilepsy & Behavior. 15:
461–466.
DOI 10.1016/j.yebeh.2009.05.011 [Accessed 30 January 2013]
Parsons T (1951). The Social System. Routledge: London.
Radford S, Carr, M. Hehir M, Davis B, Robertson L, Cockshott, Tipler S, Hewlett S. (2008). ‘It’s quite hard to grasp the enormity of it’: Perceived needs of people upon diagnosis of rheumatoid arthritis. Musculoskeletal Care. 6(3): 155–167
DOI: 10.1002/msc.132 [Accessed 20 December 2013]
Rosenhan D (1972). On being Sane in insane places. Science 179 (4070) 250-258
DOI:10.1126/science.179.4070.250 [Accessed 17 October 2013]
Schneider J and Conrad P (1980). In the closet with illness: Epilepsy, Stigma Potential and Information Control. Social Problems. 28(1) 32-44. Available at www.heinonline.org [Accessed 03 January 2014]
Schneider J and Conrad P (1983). Having epilepsy: the experience and control of illness. Temple University Press: Philadelphia
Scrambler G (2003). Sociology as Applied to Medicine 5th Ed. Saunders: London
Scrambler G (2009). Health Related Stigma. Sociology of Health & Illness, 31(3): 441 - 455
DOI: 10.1111/j.1467-9566.2009.01161.x [accessed 04 December 2013]
Scrambler G and Hopkins H (1986). Being Epileptic: Coming to terms with stigma. Sociology of Health & Illness. 8(1): 26-43 [Accessed 04 December 2013]
Stockwell F (1972). The Unpopular Patient. Royal College of Nursing: London.
Wright Mills C (1959). The Sociological Imagination: Chapter One:The Promise. Oxford University Press: London.
The aim of this paper is to identify the concepts of labelling and stigma, and how they affect the lives of people with epilepsy. Epilepsy is a chronic physical disorder that affects the brain and causes repeated seizures. 500,000 people, or 1 in 100 of the population, in the UK are epileptic. Epilepsy can develop at any age, although it normally starts in childhood. Although there is no treatment to cure epilepsy, in 70% of cases anti-epileptic drugs (AEDs) successfully control seizures. The disorder affects the lives of individuals with epilepsy (IWE) in many practical ways, such as driving restrictions, potential difficulties with pregnancy and caution with alcohol consumption. There is advice and support, along with …show more content…
AEDs and other treatments, available to help epileptics manage these factors in order to cope with the detrimental effect on their lives (NHS,2012). One of the factors that is perhaps less obvious is the impact of coming to terms with the label of epilepsy, the effects of the stigma that it gives rise to, and how this can be reduced.
Discussion
In order to examine the concepts of stigma and labelling it is essential to understand how society is constructed. It is necessary to look at how social construction of labels and the existence of inequalities of power within a society contribute to the formation of stigma and its effect on the lives of epilepsy patients.
The sociological imagination is fundamental to the social construction on which stigma is based.
It looks at the interaction between 'private troubles ' and 'public issues ', and takes into account the factors within a particular society which determine the experience of the individual and the role that they 'act out '. The sociological imagination is a way of thinking about how people view themselves in relation to others, and how these individual perspectives culminate to form both the self-identity, a perceived insight (correct or incorrect) of how other people perceive another individual, and how these culminate to produce majority attitudes, which vary over time and in different cultures (Wright Mills,1959). This forms the foundation of assumptions of 'normality ' in each particular society (Rosenhan,1972), that stems from the common and therefore dominant attitudes of the majority. This is the basis for how the role of the individual is constructed depending on certain aspects, for example their gender or ethnic identity. This leads to an expectation of behaviour patterns, which individuals then ‘act out’, consciously or unconsciously in order to conform to this particular role. Differences between people exist, but not all differences are identified as negative in all cultures. For example, moderate alcohol consumption in the UK is considered acceptable behaviour, although not everyone participates for various reasons, most notably religion, but in some …show more content…
cultures drinking alcohol is unacceptable and illegal in certain countries. (Berger&Luckmann,1967).
Non conformity to this social norm can be viewed as deviance. Deviance signals behaviours or characteristics for which the non-conforming person is held responsible and therefore implicates an element of blame (Scrambler,2003). Chronic illness began to be considered in society as deviant behaviour with the increase in medicalization, which, according to Zola (1972) gave medicine more of a control over everyday life. Illich (1975) examines iatrogenesis, of which the factor most relevant to this discussion is the sometimes unnecessary labelling of illness. Although in epilepsy labelling can be positive with regard to provision of beneficial treatment, it is essential to firstly to discuss how the escalation of medical labelling as a whole forms the basis for regarding chronic illness as deviant behaviour. The idea that medicalization made it possible for people without a genuine illness to take advantage; and act as though they were ill, to avoid contribution to society, was recognised by Talcott Parsons (1951). He conceptualized the sick role: a set of rules which, if adhered to allow an ill person to legitimately take time out from their contribution to society in order to recover. However chronic illness such as epilepsy is not cured, only managed (to different extents, depending on the patient). Due to this, individuals with a chronic illness are unable to conform to the rules of the sick role and are therefore labelled as deviant (Parsons,1951).
One aspect of the social construction of illness is that there are differences between illnesses in the way that they are perceived; this varies between cultures, and over time. Social control by means of diagnosis by a medical professional allocates a label to the sufferer, and influences the way in which they are viewed by others and their perception of themselves. Societal assumptions or lay beliefs are attached to different diseases in order to make sense of them. The combination of these factors leads to some illnesses being viewed as deviant and therefore stigmatised (Conrad&Barker,2010). Although deviance is applicable to epilepsy in the element that IWE are seen/or see themselves as possessing a characteristic different from societal norms, deviance in this respect does not signal blame (Scrambler,2009). An example of chronic illness where deviance could signify blame is lung cancer, which has become more stigmatised in correlation with the rise in anti-smoking awareness and therefore seen to be self-inflicted (Chapple&Ziebland,2004).
Goffman (1963) has conceptualised stigma as the culmination of deviance and negative labelling. A person is stigmatised when their label causes them to be perceived as having a detrimental attribute which separates them from social norms. Stigma implies loss of status and self-worth, belittling the stigmatised person and transforming them into a devalued individual (Goffman,1963). In some cases of chronic illness diagnosis and the accompanying label are welcomed. In one qualitative study of rheumatoid arthritis many participants were relieved to finally understand their symptoms and felt no shame attached to the label (Radford et al.2008). In the case of most IWE, the official label of epilepsy is not welcomed but perceived as negative and unwanted (Scrambler&Hopkins,1986). The label is difficult to remove; this 'stickiness ' is a contributing factor to negative feelings surrounding diagnosis (Rosenhan,1959) and in interactions with the physician assigning the label IWE may attempt to negotiate as a way of rejecting the diagnosis (Scrambler&Hopkins,1986). This initial reaction was found to commonly stem from preconceived misconceptions about epilepsy by IWE, which reflects general misconceptions and lack of knowledge of the illness in society. In a qualitative study by Kilinç and Cambell (2009) the majority of reactions to diagnosis, from IWEs, who were diagnosed in adulthood, were negative. The reasons were that they felt the label confirmed that they were ‘rejects’ or ‘odd’, and some referred to the lay belief that IWE were ‘slow’ due to the misguided link with mental illness. This demonstrates that there is a lack of knowledge surrounding epilepsy which leads to the label being perceived as devaluing or discrediting, giving epilepsy a stigmatized status (Goffman,1963).
As a direct result of the diagnosis of chronic illness secondary deviation is often a consequence. The recipient of the label feels an instant disruption to their biography on being diagnosed and responds by succumbing to this new societal role (Scrambler,2003).
Stigma can be categorised at discredited or discreditable. Discredited features are those which are visible, such as facial disfigurement (Goffman,1963). This induces a range of reactions from other people from verbal abuse to more commonly intrusive acts such as staring and sympathy, which although well intentioned is still a form of stigma, for which coping mechanisms are used. Impression management is the coping tool whereby people with a discredited attribute alter their behaviour; or their appearance to neutralise the negative effect of the characteristic (Bonnano&Esmaelib,2012).
Discreditable characteristics are not physically visible, and only have the potential to be stigmatised (Goffman,1963). Epilepsy has been categorised as a discreditable, and described as a hidden form of stigma, which creates the dilemma of whether or not to disclose their illness. Information management is normally used as a coping mechanism to hide their condition from employers, acquaintances and even spouses, resulting in self restriction of life opportunities in order to minimise the risk of being discovered (Scrambler,2009).
Scrambler and Hopkins (1986) went on to make a distinction between enacted and felt stigma termed the Hidden Distress Model. Enacted stigma is more common with discredited illnesses; with epilepsy stigma is only enacted in the circumstance that other people are made, or become, aware of the epileptic status. In this situation there is potential for the stigma to be enacted (actual discrimination becomes possible) (Scrambler,2003). Discrimination is dependent on relationships of unequal power within society (Link& Phelan,2001). Marx examined this power relationship with regard to social inequalities in society. The exploitation of labour was only possible due to the rich and upper class controlling wages of employees, who were not in a position to have any influence over decisions. It is the same principle when related to stigma. In the workplace an employer may feel that it is a risk to employ an IWE due to belief that the illness will affect their ability to carry out the role, even if this is not the case. If the employer makes a judgement to hire or not to hire based on the medical condition when it is irrelevant to the role then this is an instance of discrimination. For example, in one form of epilepsy the IWE will only suffer from seizures at night, therefore if the job is in the day time this would not affect the performance of the employee (Epilepsy Action,2013).
Although there have been incidences of discrimination against IWE there is no conclusive research to show that there is a consistent trend for this. In research based on interviews with the lay public it is evident that the attitudes to those with epilepsy have improved and are generally positive (Scrambler&Hopkins,1986).
Felt stigma has a much more prominent effect on the lives of discreditable illness than enacted stigma. It is the fear of encountering prejudice and stigmatisation, and also the feeling of shame associated with the label. Due to invisibility of epilepsy, change of attitude, and subsequently, behaviour has an impact on social interactions and personal relationships (Scrambler&Hopkins, 1986).
In the case of the IWE, once labelled, the correct or incorrect preconception that epilepsy is stigmatised by others allows them to form the belief that they are different and somehow inferior. Qualitative studies have shown that IWE have a tendency to become less confident and opinionated, and less likely to participate in social events. In extreme cases some admitted to becoming reclusive: “I’m practically a hermit” (Kilinç&Cambell,2009). Often the fear of being exposed to enacted stigma, and the stress of concealment is more problematic than occasions when disclosure has occurred. Interviews with IWE revealed that the majority only disclose their condition when it is absolutely necessary, and most could not recall negative incidents of enacted stigma. The assumption that prejudices exist against people with epilepsy was rife but appeared to have little evidence to substantiate it (Scrambler and Hopkins,1986).
Schneider and Conrad (1983) theorized the different ways that IWEs use information management to adapt to their condition. They describe three different ways in which the ‘adjusted’ individuals neutralised stigma: The ‘pragmatic type’ only disclose when absolutely essential; the ‘secret type’ go to great lengths to conceal their epilepsy, and the ‘quasi-liberated type’ exercise a tactic of de-stigmatization, openly proclaiming their status in order to reject discredit. When an individual is classed as unadjusted the label of epilepsy has ‘master status’ (Lemert,1961), it becomes the central trait which overrides other aspects of the individual 's identity, not only from the perspective of other people but also from the individual him/herself.
Concealment is often derived from the influence of ‘stigma coaching’ by parents (and some well-meaning doctors) who discourage talking openly about epilepsy. Although the intention is to protect the child from enacted stigma, and perhaps also to divert courtesy stigma (stigma by association with the IWE), this only serves to elevate the need to conceal and hence increases felt stigma (Schneider&Conrad,1980).
Studies have shown that negative labelling of patients does exist in health care environments. Felicity Stockwell (1972) found that patients who were less popular than others received a lower standard of care. In particular, patients who were in hospital for a long time, or had repeat visits were not seen favourably, this is resonant with sufferers of chronic illness attracting stigma. Patients with complex problems, including psychosocial elements were also viewed negatively by healthcare professionals, being referred to as ‘rubbish’(Jeffrey,1979). This supports concepts put forward by Link and Phelan (2001) that stigma and negative labelling are an institutional problem .Their conceptualizations put emphasis on identifying where the responsibility for the problems and effects of stigma lies. The label is something that is affixed to the individual, a mark that affects how other people identify them. Therefore, in order to tackle the psychosocial issues that stem from stigma it is important to target those who stigmatise and not the stigmatised individuals. This dictates that the overall prescription for action is to change the attitudes of society as a whole.
Practical recommendations for how to achieve this include focus on particular groups (Link&Phelan,2001). For example the government initiative to target hiring practices: ‘Positive about disable people’ have been successful in increasing employment in stigmatized groups by encouraging employers to guarantee interviews for those with chronic illnesses who meet the necessary requirements. For IWE, although this could be reassuring, there is no need to disclose that they suffer from epilepsy unless it would affect their ability to perform (Epilepsy Action,2014). However, It is a step in the right direction in reducing the need to conceal the condition, thereby potentially reducing felt stigma.
Nurses provide care for people with a range of chronic illnesses. An understanding of how patients cope with stigmatizing conditions is crucial for nurses who aim to deliver high quality patient care (Joachim&Acorn,2001). There are several factors for a student nurse to take into practice which will aid in providing the best quality of care for chronically ill patients potentially affected by stigma. One of the most fundamental considerations is to treat the patient as an individual (NMC,2008). This encompasses not only the practical aspects of care but seeing each patient as a whole person and ensuring that a holistic approach is taken. An understanding of visible and invisible stigma, and the ways in which these can affect a person’s life allow for a greater degree of empathy.
It has been mentioned that health care professionals can act as stigma coaches, inadvertently encouraging patients to conceal their illness. This can be avoided by awareness of stigma surrounding chronic illness and application of appropriate communication, the importance of which is stressed in the NMC Code of Conduct (2008). Guiding the patient in their own attitude towards the disease by talking openly, honestly and professionally with the patient and using the correct terminology such as ‘epilepsy’, instead of euphemising will reinforce and reassure that there is nothing to be ashamed of, contributing to reducing felt stigma.
Competence, one of the six Cs of nursing (NMC,2008) signifying having knowledge of Anti-Epileptic Drugs, and alternative treatments, is essential for best practice, and a good foundation for making educated referrals to specialists such as dieticians. The ability to confidently discuss different choices that the epileptic patient has available in order to manage the illness, will in turn make the patient more confident in talking about their condition and allow them to independently and actively take control of how it effects their daily life, therefore acting to combat felt stigma. One specific example is the NHS Expert Patient Programme which not only aims to improve confidence but also provides a social forum for discussion with patients who may also be affected by stigma.
Conclusion
The concepts of the sociological imagination and how society is constructed are fundamental in order to gain a comprehensive perspective on the construction of illness in society. From this, deviance and negative labelling create different types of stigma associated with chronic illnesses. It is essential to recognise how visible and invisible stigmas are manifested, the coping techniques that individuals adopt, and the detrimental effect on their lives. This gives an insight into changes that need to be made on a personal and institutional level, most poignantly in the health care setting, in order to reduce stigma in society.
To provide high quality and holistic care in practice it is important to be aware of the origins of stigma and negative labelling, as well as the way that they can affect patient’s lives. A student nurse should adhere to NMC guidelines, in particular maintaining a non-judgemental attitude, avoiding assumptions based on socially perceived stereotypes and valuing each patient as an individual. This is not only applicable to patients with a potentially stigmatizing illness, as stigma, labelling, and discrimination affect individuals based on a multitude of factors from ethnicity, to gender, to age and social status to name but a few.
References
Berger P and Luckmann T (1967). The Social Construction of Reality. Doubleday: Garden City
Bonannoa A and Esmaelib B (2012). Facial Disfigurement, Stigma, and Cancer: Interaction Between Patients and Members of Secondary Groups. Sociological Spectrum: Mid-South Sociological. 32(2): 138-156 DOI:10.1080/02732173.2012.646156 [Accessed 03 January 2014]
Chapple A and Ziebland S (2004), Stigma shame and blame experienced by patients with lung cancer: a qualitative study, British Medical Journal, 328 (7454): 1470
DOI: 10.1136/bmj.38111.639734.7C [Accessed 04 December 2013]
Conrad P and Barker K (2010). The Social Construction of Illness: Key Insights and Policy Implications, Journal of Health and Social Behaviour 51(1): 67 - 79
DOI: 10.1177/0022146510383495 [Accessed 04 December 2013]
EpilepsyAction. Epilepsy Information and Advice [website] (2014). Available at: www.epilepsy.org.uk [Accessed 03 January 2014]
Goffman E (1963).
Stigma: Notes on the management of spoiled identity. Penguin: St Ives
Joachim G and Acorn S (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing. 32(1): 243-248.
DOI: 10.1046/j.1365-2648.2000.01466.x [Accessed 07 January 2014]
Johnson M and Webb C (1995). Rediscovering unpopular patients: the concept of social judgment. Journal of Advanced Nursing 21(3): 466–475
DOI: 10.1111/j.1365-2648.1995.tb02729.x [Accessed 04 December 2013]
Kilinç, S and Campbell, C (2009). “It shouldn’t be something that’s evil, it should be talked about”: A phenomenological approach to epilepsy and stigma. Seizure. Vol.18(10): 665-671
DOI: 10.1016/j.seizure.2009.09.001 [Accessed 03 January 2014]
Link P and Phelan J (2001). Conceptualizing stigma. Annual Review of Sociology 27(1): 363 – 385 DOI: 10.1146/annurev.soc.27.1.363 [Accessed 04 December 2013]
NHS Choices [website] Available at: www.nhs/conditions/epilepsy [Accessed 27 December 2013]
Nursing and Midwifery Council (2008). Code of Professional Conduct. London: NMC
Parfene C, Stewart T, Tricia Z. King T (2009). Epilepsy stigma and stigma by association in the workplace. Epilepsy & Behavior. 15:
461–466.
DOI 10.1016/j.yebeh.2009.05.011 [Accessed 30 January 2013]
Parsons T (1951). The Social System. Routledge: London.
Radford S, Carr, M. Hehir M, Davis B, Robertson L, Cockshott, Tipler S, Hewlett S. (2008). ‘It’s quite hard to grasp the enormity of it’: Perceived needs of people upon diagnosis of rheumatoid arthritis. Musculoskeletal Care. 6(3): 155–167
DOI: 10.1002/msc.132 [Accessed 20 December 2013]
Rosenhan D (1972). On being Sane in insane places. Science 179 (4070) 250-258
DOI:10.1126/science.179.4070.250 [Accessed 17 October 2013]
Schneider J and Conrad P (1980). In the closet with illness: Epilepsy, Stigma Potential and Information Control. Social Problems. 28(1) 32-44. Available at www.heinonline.org [Accessed 03 January 2014]
Schneider J and Conrad P (1983). Having epilepsy: the experience and control of illness. Temple University Press: Philadelphia
Scrambler G (2003). Sociology as Applied to Medicine 5th Ed. Saunders: London
Scrambler G (2009). Health Related Stigma. Sociology of Health & Illness, 31(3): 441 - 455
DOI: 10.1111/j.1467-9566.2009.01161.x [accessed 04 December 2013]
Scrambler G and Hopkins H (1986). Being Epileptic: Coming to terms with stigma. Sociology of Health & Illness. 8(1): 26-43 [Accessed 04 December 2013]
Stockwell F (1972). The Unpopular Patient. Royal College of Nursing: London.
Wright Mills C (1959). The Sociological Imagination: Chapter One:The Promise. Oxford University Press: London.