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Patient perceptions of epilepsy and of doctors who manage epilepsy
Seizure 1994; 3:287-293
Patient perceptions of epilepsy and of doctors who manage epilepsy GRAHAM SCAMBLER Un# of Medical Sociology, Department of Psychiatry, UCL Medical School, London WI N 8AA, UK
INTRODUCTION
Epilepsy is more common than is often appreciated by non-epileptologists. According to current estimates, approximately one in 40 people will experience two or more non-febrile seizures at some time, and one in 200 will experience chronic epilepsy 1. After headaches/ migraine, epilepsy precipitates the most consultations with neurologists in Britain 2. Treatment by antiepileptic drugs secures early remission in 70-80% of cases a. The economic costs of epilepsy to the community are considerable. It has been calculated that in 1988 epilepsy cost the National Health Service (NHS) £109 million; 77% of this was absorbed by the hospital sector, 19% by pharmaceutical services and 4% by general practice 4. However, these figures do not take into account the costs of under-employment, vocational rehabilitation, residential care and excess mortality. Taking these additional costs into account, the estimated cost of epilepsy in 1989 has been put at £500 million 4. The multidimensional costs to individuals with epilepsy m a y also be high, whether due to reduced income or opportunity, or to diminished quality of life. It is with these 'costs to individuals' that this paper is largely concerned. There is now a considerable body of research bearing on how people with epilepsy define and come to terms with their conditions, and on their views of the doctors to whom they present for treatment and care. This research will be reviewed here under headings and subheadings which reflect the reviewer's own efforts to think through the salience of the various findings for the enterprise of agreeing and measuring patient need and for constructing improved programmes for treatment and care to meet this need. In the first section the research literature on 1059-1311/94/040287+07
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patients' own perceptions of their epilepsy and their strategies for coping will be examined. The focus of the second section will be on patients' reception and theories about their treatment and care and on their evaluations of their doctors, specialist and generalist. Special attention will be paid here to how, and against what standard, patients' evaluations of doctors and other health workers are constructed. And finally, some of the key implications of the published research for enhanced quality of life and quality of care in relation to epilepsy will be addressed.
PATIENTS' PERCEPTIONS OF EPILEPSY
It should not be thought that the epilepsy of the medical perspective is in any way definitive or unproblematic. Throughout history physicians have used the umbrella designation epilepsy to stand for a wide variety of different concepts, and further refinement or change can be expected. There is, then, no one enduring medical concept of epilepsy; even among contemporary epileptologists nosological controversies persist. Recognition of such 'uncertainty', and the fallibilism it implies, is of course a mark of a mature, not an immature, perspective. No more should it be presumed that all worthwhile knowledge about epileptic phenomena is m e d i c a l knowledge. That medical knowledge and expertise in relation to epilepsy is salient and important to patients is beyond dispute, and new means are being developed to assess the extent of patients' medical knowledge of epilepsy in general 5 and of their own epilepsy in particular 6. But the point needs to be made that patients have their own experiential knowledge of epilepsy, and with it a form of expertise available to few epileptologists. This (~ 1994 British Epilepsy Association
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288 knowledge and expertise can be neglected, overlooked and even treated with disdain by physicians. In this section we shall examine patients' medical and experiential knowledge of epilepsy, often against the background of wider lay or cultural perceptions and stereotypes of epilepsy.
Lay culture and stigma Children with epilepsy are generally dependent on their parents for their introductions to concepts of epileptic phenomena, while for parents and adults with epilepsy medicine and lay culture are more direct resources. In each case, however, medicine and lay culture provide the basic, enduring 'reference groups'. It is with the latter that we are concerned here. There is evidence in Britain, Europe and the USA that lay persons tend to be more informed about the medical concept of epilepsy and more open-minded and sympathetic towards people with epilepsy than was the case a generation ago, although there is reason to be sceptical about whether this new comprehension translates straightforwardly into non-discriminatory behaviour 7. It seems clear, however, that parents and adults with epilepsy are typically less than charitable or optimistic in their interpretations, and sometimes internalizations, of lay perceptions and judgements about epilepsy. There is evidence that many people confronted with a diagnosis of epilepsy are most upset not at the prospect of recurrent seizures or protracted treatment, but at what they take to be ubiquitous and damaging lay stereotypes conjured up and brought into play in their lives by the word epilepsy. While most studies suggest this, however, not all do. Ryan and colleagues have claimed that many Americans do not feel in any way stigmatized by their epilepsy s. They report, for example, that 81% of those who filled in their postal questionnaires felt they had been treated fairly by employers. Nearly three out of four felt they had been neither unduly restricted nor treated differently because of their seizures. Significantly, however, the index of 'perceived stigma' used by Ryan's team contained a number of items on whether or not participants had actually experienced discrimination based on stigma. There is now clear evidence from other sources supporting an important distinction between perceived and experienced stigma.
This distinction has perhaps been asserted and put to use most unambiguously by Scambler and Hopkins 9, although it is now widely utilized. Nine out of 10 in their community sample of adults with epilepsy gave evidence of strong perceived or felt stigma. The concept of felt stigma refers here, first, to a sense of shame associated with 'being epileptic' (entailing what the authors term an 'ontological' rather than a moral deficit) and, second, to an apprehensive expectation of meeting with discrimination or rejection from others. The actual experience of discrimination was termed enacted stigma. This distinction between felt and e~acted stigma underpined the authors' 'hidden distress' model of epilepsy 7. According to this model, when people are confronted w i t h a diagnosis of epilepsy they tend to see i t - - o r come to see it as a result of stigma coaching--as a social liability. In general terms, this is because they associate epilepsy with stigma. More specifically, it has its genesis in a 'special view of the world' in which a fear of enacted stigma predominates. When triggered by an event or circumstance (e.g. a hospital visit or a job change), this special view of the world predisposes to certain forms of behaviour, most conspicuously to the concealment of the medical condition and its diagnostic label from others. Concealment is in consequence the first-choice strategy for most people with epilepsy for as long as it remains viable. Paradoxically, concealment reduces the opportunities for, and hence rate of, enacted stigma, with the result that felt stigma is typically more disruptive of the lives of people with epilepsy than enacted stigma. The authors add that the extent to which felt stigma is justifled--or, put differently, the reality or severity of the threat of enacted s t i g m a - - is not known 7. Drawing on data from the Antiepileptic Drug Withdrawal Study, Jacoby 1°'11 has recently proffered further empirical support for the distinction between felt and enacted stigma, showing its relevance even to the lives and perceptions of people with epilepsy in remission. The urge towards rationalization Blaxter 12 found that people with a wide range of disabilities had a 'deep need' to construct a 'coherent story' to account for their conditions and circumstances. What Blaxter calls a 'strain towards rationality' is here termed rationalization': and rationalization has to do
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Perceptions of epilepsy
with tackling the 'cognitive problems' posed by epilepsy 13. It is crucial to appreciate t h a t such problems, generated and belonging within the lay domain, are not solved merely by educating patients in the medical perspective on epilepsy. In this context it needs to be borne in mind that questionnaires to assess how much patients know about epilepsy in general 5 and about their own epilepsy in particular 6 are only pertinent to care to the extent that medical knowledge is a proven and effective resource for patients. What cognitive problems do people with epilepsy typically encounter? Unsurprisingly, the key set concerns aetiology. When Scambler and Hopkins asked their respondents what questions they would like to put to a physician over half the queries volunteered were about aetiology 7. Doubtless this was partly a function of the fact that in only a quarter of cases had a cause of epilepsy been medically identified. (Even in the more recent National General Practice Study of Epilepsy 14, in only 40% of cases was a cause identified by physicians.) But, significantly, the aetiological queries were often expressed in a lay r a t h e r than a medical vocabulary--'Why me?' or 'What have I done?' Scambler and Hopkins found that 60% of those who knew of no medical cause of their epilepsy had generated their own lay 'theories '7. Interestingly, just as in Tavriger's 15 earlier study of parental theories of the causes of epilepsy, 'prolonged stress' proved the most attractive category. Three types of motivation seemed relevant, each linked to a wider coping agenda: first, some people clearly felt that if their seizures were the product of accumulated stress, then this precluded the possibility of a - - m o r e threatening--'physical' cause; second, some reasoned that if their seizures were the result of stress, then t h e - - s t i g m a t i z i n g - medical diagnosis of epilepsy must surely be erroneous; and third, others judged that if their seizures were due to stress, then it followed that there must be hope of a cure. Often, to switch to the vocabulary of medicine once more, these lay theorizers appeared to conflate the concepts of aetiological agent and precipitant of seizures. Such cognitive problems around aetiology, or in other areas like prognosis, typically expose the different perspectives and agendas of physicians and patients. Not infrequently there is a 'clash of perspectives '16, one consequence of which is a measure of patient dissat-
isfaction with medical management and care. This issue of patient satisfaction/dissatisfaction is broached directly in the next section. Strategies for action A third component to patients' perspectives on epilepsy, in m a n y ways complementary to felt stigma and rationalization, consists in the 'action strategies' people devise to cope with the intrusions of epilepsy into their lives ~. Because epilepsy is stigmatizing but transient and largely inconspicuous, people who have it m a y be described as discreditable rather than discredited 1~. One common issue of coping, therefore, concerns the m a n a g e m e n t of information. According to the hidden distress model summarized earlier, concealment is the firstchoice--if not of course the o n l y - - s t r a t e g y for most adults with epilepsy. A range of strategies have been detailed by Schneider and Conrad in the USA is. Apart from 'secrecy', akin to concealment, these include 'pragmatism', or selective disclosure, and 'quasi-liberationism', involving an open and unapologetic broadcasting of one's epilepsy. The authors also refer to people who fail to devise a strategy to cope with their epilepsy and become consumed or 'debilitated' by it. In his study of the parents of children with epilepsy, West also discerned three common strategies: these were 'concealment' again, plus 'avoidance', similar to concealment but involving an avoidance of situations of risk of misadventure or stigmatization, and 'avowal of normality', implying a conscious maximization of disclosure and participation in society 19. West adds that those parents who complained of stigmatization tended to be those whose advocated strategies of concealment or avoidance had failed. The concept of coping in relation to epilepsy is complex and multidimensional and pertains to a number of arenas of life activity 2°. Three core themes in patients' lay perspectives on their epilepsy have been emphasized here: felt stigma, rationalization and action strategy. These themes are important too in appreciating how patients come to evaluate the treatment and care accorded to them by physicians. PATIENTS' PERCEPTIONS OF PHYSICIANS For m a n y years after the publication of Parsons' The Social System sociologists seemed to echo professions of medicine in defining
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patients' passivity when consulting physicians as normal and functional 21. It is a commonplace now that patients are typically--and app r o p r i a t e l y - l e s s passive t h a n might appear to be the case on the basis of casual observations of consultations. Most patients bring to their visits with physicians a series of questions, doubts and anxieties deriving from their own lay perspectives on epilepsy. Commonly they will have 'rehearsed' in advance of the consultation how both to articulate their concerns and to ensure that their voice is heard 22. No less commonly, perhaps, patients' rehearsals are subordinated to physicians' routines: and, it might be added, their suppressed activity taken for passivity. Independently of deficiencies in the medical management of seizures identified by successve audits, patients, when asked, often feel they have been given insufficient information and/ or counselling about their epilepsy 23-2~. In one recent survey in Belfast, for example, despite a high level of satisfaction with general hospital management, approximately a third of patients said they had not been told what epilepsy is; in excess of 90% wanted more information about epilepsy; and three-quarters felt t h e y had not been given enough information about the side-effects of antiepileptic drugs. Interestingly, and reflecting a growing health professional lobby, 60% wanted to discuss their epilepsy with someone other t h a n a consultant, most requesting the services of a specialist n u r s e 26.
There is in fact abundant evidence that m a n y physicians are not good communicators in relation to epilepsy. West refers to a 'conspiracy of silence' in which they appear uninterested, insecure, hurried and unwilling or unable to discuss patients' problems 19. Several studies have confirmed that physicians tend to be interested in those aspects of patient rationalization that promise to facilitate diagnosis or management, but not in the process of rationalization per se; and that neither felt stigma nor action strategies tend to be on the medical agenda for consultations and are frequently handled inexpertly or cursorily if raised by patients 7. It is important to appreciate, then, t h a t unrecognized or unaddressed divergences or clashes between patients' lay and physicians' medical perspectives on epilepsyranging from the kinds of cognitive problems mentioned here to issues like the unarticulated fear of seizures--can render good communication all but impossible.
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Physicians who do not engage with patients' perspectives can find themselves in no-win situations. In one community study of adults with epilepsy, for example, it was clear that a number of patients were just as unhappy with their physicians for applying a medical label to their condition as they had previously been unhappy with t h e m for not doing so. Crucial here was the perception of epilepsy as a stigmatizing condition. It was felt stigma too that variously prompted patients to reject the diagnosis of epilepsy, or at least to try to 'negotiate' for a more acceptable alternative; to misinterpret or reinterpret normal EEGs as indicative of premature or mistaken diagnosis; and to stop antiepileptic medication as a way of hastening the desired r e t u r n from 'epileptic' to ' n o r m a l ' status 7. To pick up the issue of compliance/noncompliance with antiepileptic drugs here, it is known that as m a n y as 30-50% of people with epilepsy m a y be non-compliant 27. To appreciate why this is so, it is again necessary to engage with patients' as well as physicians' perspectives on epilepsy 2s. One study to do this was carried out in the USA 29. The authors found clear evidence that people with epilepsy devise their own strategies for drug-taking. Those they called 'self-regulators' variously altered their prescribed dosages to test out their theories of seizure control; to avoid drug dependence; to minimize the risk of their drugtaking being witnessed and leading to their exposure as 'epileptics'; to ensure that seizures did not occur on special occasions; or to enhance their sense of control over their conditions. In the face of this evidence of active patients, it is obviously not enough for physicians to educate them in the medical perspective, especially if compliance is the sole justification for doing so. Indeed, the whole concept of compliance is being increasingly questioned. As Mischler points out, 'it requires a shift in perspective and some reflection to recognize t h a t the concept incorporates a medical bias '3°. It is revealing that although in an array of influential studies a high proportion of patients have reported that physicians did not comply with their expectations, physicians have not in consequence been described as non-compliant with patient expectations 7. Only patients, it seems, have traditionally been non-compliant, although this is arguably changing with the new policy emphasis on audit and evaluation.
Perceptions of epilepsy
THE VOICES OF THE LIFEWORLD AND OF MEDICINE
Some of the core aspects of patients' perspectives on epilepsy have been outlined. It has been indicated that patients tend to charge physicians with not giving them enough medical information and with being disinterested in their own lay definitions and constructions of problems requiring solution. It has been implied that physicians can increase the prospects of good communication by listening to patients and by engaging with patients' perspectives on epilepsy. This approach is epitomized in Scambler's tentative criteria of good quality care 31. In addition to providing a technically competent and up-to-date service at optimum cost, covering the investigation, diagnosis and treatment of epilepsy, he suggests that more attention might be paid to the de-mythologizing and destigmatizing of epilepsy in the community. More pertinently here, he lists four recommendations in relation to physician-patient encounters: first, acceptance of the principle of what Schneider and COnrad have called 'coparticipation in care '29, which involves accommodating the concept of patients as decisionmakers: second, acceptance also of an 'open agenda' in physician-patient encounters, which gives patients opportunities and space to raise matters they define as important: third, 'an holistic rather than a biomedical orientation to care', with the emphasis on informing, advising and helping people rather than merely managing disease; and fourth, the development of 'counselling skills' to complement technical skills, which presupposes both an awareness of the impact of epilepsy on quality of life and learned expertise in advising on a range of strategies for coping. It might be argued that there is more than a dash of utopianism in these recommendations. After all, it is only recently that teaching on 'communication skills' has been taken at all seriously in the medical curriculum. Nor has the debate about the precise parameters of the social role of the contemporary physician been resolved. In any event, such are the day-to-day pressures and time constraints affecting general practitioners and hospital specialists alike that it is surely unrealistic to expect this quartet of recommendations to be acted upon. Much of this is of course undeniable, although it has been suggested that we should be careful not to conflate the concepts of good quality care
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with optimum care given existing resources32. Drawing on a long tradition in the social sciences, Mischler has distinguished between the 'voice of the lifeworld' and the 'voice of medicine'3°. This distinction is helpful in commenting further on Scambler's recommendations for physician-patient encounters. Four particular observations warrant elaboration. The first has to do with 'patient need'. Doubtless spurred by the new emphasis on mechanisms of audit, epileptologists are increasingly alert to the issues of defining and meeting patient need. If their general commentaries on epilepsy remain largely biomedical, they now demonstrate considerable sensitivitya3. It is interesting, however, that in many statements about need--and the recent 'epilepsy needs document' is an example here34--it is the voice of medicine and not the voice of the lifeworld which dominates. Even the concept of patient need, for which the revealing phrase 'epilepsy needs' presumably stands, is professionally defined from within the medical perspective on epilepsy. This is not to criticize a valuable, informative and up-to-date medical document, but rather to put it into a broader social context. It is of the essence of Scambler's four recommendations that people with epilepsy when consulting their physicians be afforded time and space to define their own need. There is of course nothing sacrosanct about resultant lay definitions, which may well turn out to be flawed, inconsistent and negotiable. But they require to be elicited and addressed. The fact that the various lay 'epilepsy groups' purporting to represent the patient perspective are currently somewhat factionalized and at odds is important in its own right, but peripheral in this particular context35. Nor are researchbased summaries of 'typical' patient definitions of need adequate substitutes for individual patients' articulations of their needs, although these may and should serve to sensitize physicians. The second point focuses on physicians' responses to those patient queries, often arising out of deep-seated need, which do not admit of medical, or indeed empirical, resolution (e.g. 'Why me?', 'Should I tell my employer?' etc.). It is here that counselling skills are relevant. People with epilepsy may or may not have realistic expectations about their physicians' powers to ease their concerns, but the hearing of the voice of the lifeworld is intrinsically important v. And it has been found that physicians tend not only to be parsimonious with infor-
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mation but poor listeners. Nor is this solely a function of time constraints. Counselling presumes training and a degree of commitment. Consider, for example, the person with epilepsy who is trying to devise an action strategy for the workplace. The most common form of medical advice seems to be to disclose fully and hope for the best. And yet privately m a n y physicians clearly regard such initiatives as recipes for disaster. In one study of attitudes towards epilepsy in primary care, large majorities of general practioners agreed (1) t h a t job opportunities for those with epilepsy are restricted (78%); (2) that m a n y employers who claim not to discriminate against people with epilepsy in fact do so (88%); and (3) that people with epilepsy should disclose their epilepsy to prospective employers (86%) ~6. What price assistance with an action strategy here? As one author puts it: 'It is information and open discussion r a t h e r t h a n instruction and advice packages that are needed; indeed, open discussion reflective of coparticipation in care can be therapeutic in itself '7. The third comment is that it is increasingly being suggested, especially in primary care settings, t h a t nurse practitioners with specialist training in epilepsy might more appropriately assume responsibility for coordinating and monitoring the quality of epilepsy care. Arguably, this would bring gains in efficiency and effectiveness as well as being popular with patients 26. The final point is that a minority of people with epilepsy, advisedly or otherwise, simply do not want the kind of participatory care advocated by Scambler; rather, they want to h e a r t h e - - p a t e r n a l i s t - - v o i c e of medicine loud and clear. Consider the taking of antiepileptic drugs for example. Consonant with his own work with Schneider on self-regulators, Conrad has argued that 'framing the problem as self-regulation rather t h a n compliance allows us to see modifying medication practice as a vehicle for asserting some control over epilepsy'. In the same vein Buchanan estimates t h a t 75% of his patients show a willingness to assume responsibility for their medication. In each of their respective studies, however, these authors found sizeable minorities of patients who shied away from any such active involvem e n t in the m a n a g e m e n t of their seizures. The fact that a significant minority of patients do not want (at least some aspects of) care judged here to be of 'good quality' raises the whole issue of the less-than-straightfor-
ward link between good quality care and patient satisfaction; but this is a topic for another paper.
CONCLUSION A brief attempt has been made in this paper to characterize patient perceptions of epilepsy and of the t r e a t m e n t and care they receive at the hands of physicians. Use was made of the distinction between patients' lay perspectives on epilepsy, representing the voice of the lifeworld, and the professional perspective on epilepsy, representing the voice of medicine. Both, in their different ways, it was suggested, are voices of expertise. The potential for clashes between these perspectives, and the putative requirement on the physicians' part to engage with their patients' perspectives, were discussed with reference to a particular subset of criteria of good quality care. It is said to be a propitious time for improving the quality of epilepsy care. As m a n y recent articles in Seizure testify there are some exciting scientific and clinical developments, from radical polypharmacy to innovatory surgery 37. Many hospital specialists and some general practitioners are beginning to pay more serious and systematic attention to the likely psychosocial ramifications of epilepsy (which they have of course known about through their clinical practice for m a n y a decade). With the new and urgent emphasis on audit there are moves too to involve patients in evaluating care, often through measures of patient satisfaction. This is a welcome development. It bears repetition, however, that patient satisfaction is a complex concept: patients can be satisfied with poor quality care and dissatisfied with good quality care. Around this concept, as around others in this field, there is a great deal more work to be done.
REFERENCES 1. Duncan, J. Modern treatment strategies for patients with epilepsy: A review: Journal of the Royal Society of Medicine 1991; 84: 159-162. 2. Hopkins, A., Menken, M. and DeFriesse, G. A record of patient encounters in neurological practice in the United Kingdom. Journal of Neurology, Neurosurgery and Psychiatry, 1989; 52: 436-438, 3. Annegers, J., Hauser, W. and Everbalk, L. Remission of seizures and relapse in patients with epilepsy. Epilepsia 1979; 20: 729-737.
Perceptions of epilepsy 4. Griffin, J. and Wyles, M. Epilepsy: Towards Tomorrow. Office of Health Economics. 1991. 5. Jarvis, S., Espie, O. and Brodie, M. The development of a questionnaire'to assess knowledge of epilepsy: 1 general knowledge of epilepsy. Seizure 1993; 2: 179186. 6. Jarvis, S., Espie, O. and Brodie, M. The development of a questionnaire to assess knowledge of epilepsy: 2 - knowledge of one's own condition. Seizure 1993; 2: 187-194. 7. Scambler, G. Epilepsy. London, Tavistock/Routledge, 1989. 8. Ryan, R., Kempner, K. and Emlen, A. The stigma of epilepsy as a self-concept. Epilepsia 1980; 13: 433-444. 9. Scambler, G. and Hopkins, A. Being epileptic: coming to terms with stigma. Sociology of Health and Illness 1986; 8: 26-43. 10. Jacoby, A. Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy. Social Science and Medicine 1992; 36: 657666. 11. Jacoby, A. Felt versus enacted stigma: a concept revisited. Social Science and Medicine 1994; 38: 269-274. 12. Blaxter, M. The Meaning of Disability: A Sociological Study of Impairment. London, Heinemann, 1976. 13. Locker, D. Disability and Disadvantage: the Consequences of Chronic Illness. London, Tavistock, 1983. 14. Sander, J., Hart, Y., Johnson, A. and Shorvon. S. National general practice study of epilepsy: newly diagnosed epileptic seizures in a general population. Lancet 1990; 336: 1267-1271. 15. Tavriger, R. Some parental theories about the cause of epilepsy. Epilepsia 1966; 7: 339-342. 16. Freidson, E. Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York, Russell Sage Foundation, 1970. 17. Goffman, E. Stigma: The Management of Spoiled Identity. Harmondsworth, Penguin, 1963. 18. Schneider, J. and Conrad, P. Medical and sociological typologies: the case of epilepsy. Social Science and Medicine 1981; 15A: 211-219. 19. West, P. Becoming disabled: perspectives on the labelling approach. In: Stress and Stigma: Explanation and Evidence in the Sociology of Crime and Illness. (Eds U. Gerhardt, M. Wadsworth.) London, Macmillan, 1985. 20. Scambler, G. Coping with epilepsy. In: A Textbook of Epilepsy (4th edition) (Eds J. Laidlaw, A. Richens and D. Chadwick, London, Churchill Livingstone, 1993.
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21. Parsons, T. The Social System. London, Routledge and Kegan Paul, 1951. 22. Stimson. G. and Webb, B. Going to See the Doctor." The Consultation Process in General Practice. London, Routledge and Kegan Paul, 1975. 23. Hopkins, A. and Scambler, G. How doctors deal with epilepsy. Lancet 1977; 1: 183-186. 24. Lloyd Jones, A. Medical audit of the care of patients with epilepsy in one group practice. Journal of the Royal College of General Practitioners 1980; 30: 396400. 25. Chappell, B. Epilepsy: patient views on their condition and treatment. Seizure 1992; 1: 103-109. 26. Jain, P., Patterson, V. and Morrow, J. What people with epilepsy want from a hospital clinic. Seizure 1993; 2: 75-78. 27. Buchanan, N. Noncompliance with medication amongst persons attending a tertiary referral epilepsy clinic: implications, management and outcome. Seizure 1993; 2: 79-82. 28. Trostle, J. Doctors' orders and patients' self interest: two views of medication usage? Epilepsy Research 1988; 9: 57-69. 29. Schneider, J. and Conrad, P. Having Epilepsy: the Experience and Control of Illness. Philadelphia, Temple University Press, 1983. 30. Mischler, E. Disclosure of Medicine: Dialectics of Medical Interviews. Norwood, NJ, Ablex, 1984. 31. Scambler, G. Social factors and quality of life and quality of care in epilepsy. In: Quality of Life and Quality of Care in Epilepsy. (Ed. D. Chadwick.) London, Royal Society of Medicine Services, 1990. 32. Scambler, G. Epilepsy and quality of life research. Journal of the Royal Society of Medicine 1993; 86: 449450. 33. Chadwick, D. Epilepsy. Journal of Neurology, Neurosurgery and Psychiatry 1994; 57: 264-277. 34. Brown, S., Betts, T., Chadwick, D., Halls, B., Shorvon, S. and Wallace, S. An epilepsy needs document. Seizure 1993: 2: 91-103. 35. Betts, T. and Smith, K. Epilepsy: a window of opportunity open at last--but for how long? Seizure 1994; 3: 1-4. 36. Davies, D. and Scambler, G. Attitudes towards epilepsy in general practice. International Journal of SocialPsychiatry 1988; 34: 5-12. 37. Brown, S. and Betts, T. Epilepsy--a time for change? Seizure 1994; 3: 5-11.
Patient perceptions of epilepsy and of doctors who manage epilepsy GRAHAM SCAMBLER Un# of Medical Sociology, Department of Psychiatry, UCL Medical School, London WI N 8AA, UK
INTRODUCTION
Epilepsy is more common than is often appreciated by non-epileptologists. According to current estimates, approximately one in 40 people will experience two or more non-febrile seizures at some time, and one in 200 will experience chronic epilepsy 1. After headaches/ migraine, epilepsy precipitates the most consultations with neurologists in Britain 2. Treatment by antiepileptic drugs secures early remission in 70-80% of cases a. The economic costs of epilepsy to the community are considerable. It has been calculated that in 1988 epilepsy cost the National Health Service (NHS) £109 million; 77% of this was absorbed by the hospital sector, 19% by pharmaceutical services and 4% by general practice 4. However, these figures do not take into account the costs of under-employment, vocational rehabilitation, residential care and excess mortality. Taking these additional costs into account, the estimated cost of epilepsy in 1989 has been put at £500 million 4. The multidimensional costs to individuals with epilepsy m a y also be high, whether due to reduced income or opportunity, or to diminished quality of life. It is with these 'costs to individuals' that this paper is largely concerned. There is now a considerable body of research bearing on how people with epilepsy define and come to terms with their conditions, and on their views of the doctors to whom they present for treatment and care. This research will be reviewed here under headings and subheadings which reflect the reviewer's own efforts to think through the salience of the various findings for the enterprise of agreeing and measuring patient need and for constructing improved programmes for treatment and care to meet this need. In the first section the research literature on 1059-1311/94/040287+07
$08.00/0
patients' own perceptions of their epilepsy and their strategies for coping will be examined. The focus of the second section will be on patients' reception and theories about their treatment and care and on their evaluations of their doctors, specialist and generalist. Special attention will be paid here to how, and against what standard, patients' evaluations of doctors and other health workers are constructed. And finally, some of the key implications of the published research for enhanced quality of life and quality of care in relation to epilepsy will be addressed.
PATIENTS' PERCEPTIONS OF EPILEPSY
It should not be thought that the epilepsy of the medical perspective is in any way definitive or unproblematic. Throughout history physicians have used the umbrella designation epilepsy to stand for a wide variety of different concepts, and further refinement or change can be expected. There is, then, no one enduring medical concept of epilepsy; even among contemporary epileptologists nosological controversies persist. Recognition of such 'uncertainty', and the fallibilism it implies, is of course a mark of a mature, not an immature, perspective. No more should it be presumed that all worthwhile knowledge about epileptic phenomena is m e d i c a l knowledge. That medical knowledge and expertise in relation to epilepsy is salient and important to patients is beyond dispute, and new means are being developed to assess the extent of patients' medical knowledge of epilepsy in general 5 and of their own epilepsy in particular 6. But the point needs to be made that patients have their own experiential knowledge of epilepsy, and with it a form of expertise available to few epileptologists. This (~ 1994 British Epilepsy Association
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288 knowledge and expertise can be neglected, overlooked and even treated with disdain by physicians. In this section we shall examine patients' medical and experiential knowledge of epilepsy, often against the background of wider lay or cultural perceptions and stereotypes of epilepsy.
Lay culture and stigma Children with epilepsy are generally dependent on their parents for their introductions to concepts of epileptic phenomena, while for parents and adults with epilepsy medicine and lay culture are more direct resources. In each case, however, medicine and lay culture provide the basic, enduring 'reference groups'. It is with the latter that we are concerned here. There is evidence in Britain, Europe and the USA that lay persons tend to be more informed about the medical concept of epilepsy and more open-minded and sympathetic towards people with epilepsy than was the case a generation ago, although there is reason to be sceptical about whether this new comprehension translates straightforwardly into non-discriminatory behaviour 7. It seems clear, however, that parents and adults with epilepsy are typically less than charitable or optimistic in their interpretations, and sometimes internalizations, of lay perceptions and judgements about epilepsy. There is evidence that many people confronted with a diagnosis of epilepsy are most upset not at the prospect of recurrent seizures or protracted treatment, but at what they take to be ubiquitous and damaging lay stereotypes conjured up and brought into play in their lives by the word epilepsy. While most studies suggest this, however, not all do. Ryan and colleagues have claimed that many Americans do not feel in any way stigmatized by their epilepsy s. They report, for example, that 81% of those who filled in their postal questionnaires felt they had been treated fairly by employers. Nearly three out of four felt they had been neither unduly restricted nor treated differently because of their seizures. Significantly, however, the index of 'perceived stigma' used by Ryan's team contained a number of items on whether or not participants had actually experienced discrimination based on stigma. There is now clear evidence from other sources supporting an important distinction between perceived and experienced stigma.
This distinction has perhaps been asserted and put to use most unambiguously by Scambler and Hopkins 9, although it is now widely utilized. Nine out of 10 in their community sample of adults with epilepsy gave evidence of strong perceived or felt stigma. The concept of felt stigma refers here, first, to a sense of shame associated with 'being epileptic' (entailing what the authors term an 'ontological' rather than a moral deficit) and, second, to an apprehensive expectation of meeting with discrimination or rejection from others. The actual experience of discrimination was termed enacted stigma. This distinction between felt and e~acted stigma underpined the authors' 'hidden distress' model of epilepsy 7. According to this model, when people are confronted w i t h a diagnosis of epilepsy they tend to see i t - - o r come to see it as a result of stigma coaching--as a social liability. In general terms, this is because they associate epilepsy with stigma. More specifically, it has its genesis in a 'special view of the world' in which a fear of enacted stigma predominates. When triggered by an event or circumstance (e.g. a hospital visit or a job change), this special view of the world predisposes to certain forms of behaviour, most conspicuously to the concealment of the medical condition and its diagnostic label from others. Concealment is in consequence the first-choice strategy for most people with epilepsy for as long as it remains viable. Paradoxically, concealment reduces the opportunities for, and hence rate of, enacted stigma, with the result that felt stigma is typically more disruptive of the lives of people with epilepsy than enacted stigma. The authors add that the extent to which felt stigma is justifled--or, put differently, the reality or severity of the threat of enacted s t i g m a - - is not known 7. Drawing on data from the Antiepileptic Drug Withdrawal Study, Jacoby 1°'11 has recently proffered further empirical support for the distinction between felt and enacted stigma, showing its relevance even to the lives and perceptions of people with epilepsy in remission. The urge towards rationalization Blaxter 12 found that people with a wide range of disabilities had a 'deep need' to construct a 'coherent story' to account for their conditions and circumstances. What Blaxter calls a 'strain towards rationality' is here termed rationalization': and rationalization has to do
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Perceptions of epilepsy
with tackling the 'cognitive problems' posed by epilepsy 13. It is crucial to appreciate t h a t such problems, generated and belonging within the lay domain, are not solved merely by educating patients in the medical perspective on epilepsy. In this context it needs to be borne in mind that questionnaires to assess how much patients know about epilepsy in general 5 and about their own epilepsy in particular 6 are only pertinent to care to the extent that medical knowledge is a proven and effective resource for patients. What cognitive problems do people with epilepsy typically encounter? Unsurprisingly, the key set concerns aetiology. When Scambler and Hopkins asked their respondents what questions they would like to put to a physician over half the queries volunteered were about aetiology 7. Doubtless this was partly a function of the fact that in only a quarter of cases had a cause of epilepsy been medically identified. (Even in the more recent National General Practice Study of Epilepsy 14, in only 40% of cases was a cause identified by physicians.) But, significantly, the aetiological queries were often expressed in a lay r a t h e r than a medical vocabulary--'Why me?' or 'What have I done?' Scambler and Hopkins found that 60% of those who knew of no medical cause of their epilepsy had generated their own lay 'theories '7. Interestingly, just as in Tavriger's 15 earlier study of parental theories of the causes of epilepsy, 'prolonged stress' proved the most attractive category. Three types of motivation seemed relevant, each linked to a wider coping agenda: first, some people clearly felt that if their seizures were the product of accumulated stress, then this precluded the possibility of a - - m o r e threatening--'physical' cause; second, some reasoned that if their seizures were the result of stress, then t h e - - s t i g m a t i z i n g - medical diagnosis of epilepsy must surely be erroneous; and third, others judged that if their seizures were due to stress, then it followed that there must be hope of a cure. Often, to switch to the vocabulary of medicine once more, these lay theorizers appeared to conflate the concepts of aetiological agent and precipitant of seizures. Such cognitive problems around aetiology, or in other areas like prognosis, typically expose the different perspectives and agendas of physicians and patients. Not infrequently there is a 'clash of perspectives '16, one consequence of which is a measure of patient dissat-
isfaction with medical management and care. This issue of patient satisfaction/dissatisfaction is broached directly in the next section. Strategies for action A third component to patients' perspectives on epilepsy, in m a n y ways complementary to felt stigma and rationalization, consists in the 'action strategies' people devise to cope with the intrusions of epilepsy into their lives ~. Because epilepsy is stigmatizing but transient and largely inconspicuous, people who have it m a y be described as discreditable rather than discredited 1~. One common issue of coping, therefore, concerns the m a n a g e m e n t of information. According to the hidden distress model summarized earlier, concealment is the firstchoice--if not of course the o n l y - - s t r a t e g y for most adults with epilepsy. A range of strategies have been detailed by Schneider and Conrad in the USA is. Apart from 'secrecy', akin to concealment, these include 'pragmatism', or selective disclosure, and 'quasi-liberationism', involving an open and unapologetic broadcasting of one's epilepsy. The authors also refer to people who fail to devise a strategy to cope with their epilepsy and become consumed or 'debilitated' by it. In his study of the parents of children with epilepsy, West also discerned three common strategies: these were 'concealment' again, plus 'avoidance', similar to concealment but involving an avoidance of situations of risk of misadventure or stigmatization, and 'avowal of normality', implying a conscious maximization of disclosure and participation in society 19. West adds that those parents who complained of stigmatization tended to be those whose advocated strategies of concealment or avoidance had failed. The concept of coping in relation to epilepsy is complex and multidimensional and pertains to a number of arenas of life activity 2°. Three core themes in patients' lay perspectives on their epilepsy have been emphasized here: felt stigma, rationalization and action strategy. These themes are important too in appreciating how patients come to evaluate the treatment and care accorded to them by physicians. PATIENTS' PERCEPTIONS OF PHYSICIANS For m a n y years after the publication of Parsons' The Social System sociologists seemed to echo professions of medicine in defining
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patients' passivity when consulting physicians as normal and functional 21. It is a commonplace now that patients are typically--and app r o p r i a t e l y - l e s s passive t h a n might appear to be the case on the basis of casual observations of consultations. Most patients bring to their visits with physicians a series of questions, doubts and anxieties deriving from their own lay perspectives on epilepsy. Commonly they will have 'rehearsed' in advance of the consultation how both to articulate their concerns and to ensure that their voice is heard 22. No less commonly, perhaps, patients' rehearsals are subordinated to physicians' routines: and, it might be added, their suppressed activity taken for passivity. Independently of deficiencies in the medical management of seizures identified by successve audits, patients, when asked, often feel they have been given insufficient information and/ or counselling about their epilepsy 23-2~. In one recent survey in Belfast, for example, despite a high level of satisfaction with general hospital management, approximately a third of patients said they had not been told what epilepsy is; in excess of 90% wanted more information about epilepsy; and three-quarters felt t h e y had not been given enough information about the side-effects of antiepileptic drugs. Interestingly, and reflecting a growing health professional lobby, 60% wanted to discuss their epilepsy with someone other t h a n a consultant, most requesting the services of a specialist n u r s e 26.
There is in fact abundant evidence that m a n y physicians are not good communicators in relation to epilepsy. West refers to a 'conspiracy of silence' in which they appear uninterested, insecure, hurried and unwilling or unable to discuss patients' problems 19. Several studies have confirmed that physicians tend to be interested in those aspects of patient rationalization that promise to facilitate diagnosis or management, but not in the process of rationalization per se; and that neither felt stigma nor action strategies tend to be on the medical agenda for consultations and are frequently handled inexpertly or cursorily if raised by patients 7. It is important to appreciate, then, t h a t unrecognized or unaddressed divergences or clashes between patients' lay and physicians' medical perspectives on epilepsyranging from the kinds of cognitive problems mentioned here to issues like the unarticulated fear of seizures--can render good communication all but impossible.
G. Scambler
Physicians who do not engage with patients' perspectives can find themselves in no-win situations. In one community study of adults with epilepsy, for example, it was clear that a number of patients were just as unhappy with their physicians for applying a medical label to their condition as they had previously been unhappy with t h e m for not doing so. Crucial here was the perception of epilepsy as a stigmatizing condition. It was felt stigma too that variously prompted patients to reject the diagnosis of epilepsy, or at least to try to 'negotiate' for a more acceptable alternative; to misinterpret or reinterpret normal EEGs as indicative of premature or mistaken diagnosis; and to stop antiepileptic medication as a way of hastening the desired r e t u r n from 'epileptic' to ' n o r m a l ' status 7. To pick up the issue of compliance/noncompliance with antiepileptic drugs here, it is known that as m a n y as 30-50% of people with epilepsy m a y be non-compliant 27. To appreciate why this is so, it is again necessary to engage with patients' as well as physicians' perspectives on epilepsy 2s. One study to do this was carried out in the USA 29. The authors found clear evidence that people with epilepsy devise their own strategies for drug-taking. Those they called 'self-regulators' variously altered their prescribed dosages to test out their theories of seizure control; to avoid drug dependence; to minimize the risk of their drugtaking being witnessed and leading to their exposure as 'epileptics'; to ensure that seizures did not occur on special occasions; or to enhance their sense of control over their conditions. In the face of this evidence of active patients, it is obviously not enough for physicians to educate them in the medical perspective, especially if compliance is the sole justification for doing so. Indeed, the whole concept of compliance is being increasingly questioned. As Mischler points out, 'it requires a shift in perspective and some reflection to recognize t h a t the concept incorporates a medical bias '3°. It is revealing that although in an array of influential studies a high proportion of patients have reported that physicians did not comply with their expectations, physicians have not in consequence been described as non-compliant with patient expectations 7. Only patients, it seems, have traditionally been non-compliant, although this is arguably changing with the new policy emphasis on audit and evaluation.
Perceptions of epilepsy
THE VOICES OF THE LIFEWORLD AND OF MEDICINE
Some of the core aspects of patients' perspectives on epilepsy have been outlined. It has been indicated that patients tend to charge physicians with not giving them enough medical information and with being disinterested in their own lay definitions and constructions of problems requiring solution. It has been implied that physicians can increase the prospects of good communication by listening to patients and by engaging with patients' perspectives on epilepsy. This approach is epitomized in Scambler's tentative criteria of good quality care 31. In addition to providing a technically competent and up-to-date service at optimum cost, covering the investigation, diagnosis and treatment of epilepsy, he suggests that more attention might be paid to the de-mythologizing and destigmatizing of epilepsy in the community. More pertinently here, he lists four recommendations in relation to physician-patient encounters: first, acceptance of the principle of what Schneider and COnrad have called 'coparticipation in care '29, which involves accommodating the concept of patients as decisionmakers: second, acceptance also of an 'open agenda' in physician-patient encounters, which gives patients opportunities and space to raise matters they define as important: third, 'an holistic rather than a biomedical orientation to care', with the emphasis on informing, advising and helping people rather than merely managing disease; and fourth, the development of 'counselling skills' to complement technical skills, which presupposes both an awareness of the impact of epilepsy on quality of life and learned expertise in advising on a range of strategies for coping. It might be argued that there is more than a dash of utopianism in these recommendations. After all, it is only recently that teaching on 'communication skills' has been taken at all seriously in the medical curriculum. Nor has the debate about the precise parameters of the social role of the contemporary physician been resolved. In any event, such are the day-to-day pressures and time constraints affecting general practitioners and hospital specialists alike that it is surely unrealistic to expect this quartet of recommendations to be acted upon. Much of this is of course undeniable, although it has been suggested that we should be careful not to conflate the concepts of good quality care
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with optimum care given existing resources32. Drawing on a long tradition in the social sciences, Mischler has distinguished between the 'voice of the lifeworld' and the 'voice of medicine'3°. This distinction is helpful in commenting further on Scambler's recommendations for physician-patient encounters. Four particular observations warrant elaboration. The first has to do with 'patient need'. Doubtless spurred by the new emphasis on mechanisms of audit, epileptologists are increasingly alert to the issues of defining and meeting patient need. If their general commentaries on epilepsy remain largely biomedical, they now demonstrate considerable sensitivitya3. It is interesting, however, that in many statements about need--and the recent 'epilepsy needs document' is an example here34--it is the voice of medicine and not the voice of the lifeworld which dominates. Even the concept of patient need, for which the revealing phrase 'epilepsy needs' presumably stands, is professionally defined from within the medical perspective on epilepsy. This is not to criticize a valuable, informative and up-to-date medical document, but rather to put it into a broader social context. It is of the essence of Scambler's four recommendations that people with epilepsy when consulting their physicians be afforded time and space to define their own need. There is of course nothing sacrosanct about resultant lay definitions, which may well turn out to be flawed, inconsistent and negotiable. But they require to be elicited and addressed. The fact that the various lay 'epilepsy groups' purporting to represent the patient perspective are currently somewhat factionalized and at odds is important in its own right, but peripheral in this particular context35. Nor are researchbased summaries of 'typical' patient definitions of need adequate substitutes for individual patients' articulations of their needs, although these may and should serve to sensitize physicians. The second point focuses on physicians' responses to those patient queries, often arising out of deep-seated need, which do not admit of medical, or indeed empirical, resolution (e.g. 'Why me?', 'Should I tell my employer?' etc.). It is here that counselling skills are relevant. People with epilepsy may or may not have realistic expectations about their physicians' powers to ease their concerns, but the hearing of the voice of the lifeworld is intrinsically important v. And it has been found that physicians tend not only to be parsimonious with infor-
G. Scambler
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mation but poor listeners. Nor is this solely a function of time constraints. Counselling presumes training and a degree of commitment. Consider, for example, the person with epilepsy who is trying to devise an action strategy for the workplace. The most common form of medical advice seems to be to disclose fully and hope for the best. And yet privately m a n y physicians clearly regard such initiatives as recipes for disaster. In one study of attitudes towards epilepsy in primary care, large majorities of general practioners agreed (1) t h a t job opportunities for those with epilepsy are restricted (78%); (2) that m a n y employers who claim not to discriminate against people with epilepsy in fact do so (88%); and (3) that people with epilepsy should disclose their epilepsy to prospective employers (86%) ~6. What price assistance with an action strategy here? As one author puts it: 'It is information and open discussion r a t h e r t h a n instruction and advice packages that are needed; indeed, open discussion reflective of coparticipation in care can be therapeutic in itself '7. The third comment is that it is increasingly being suggested, especially in primary care settings, t h a t nurse practitioners with specialist training in epilepsy might more appropriately assume responsibility for coordinating and monitoring the quality of epilepsy care. Arguably, this would bring gains in efficiency and effectiveness as well as being popular with patients 26. The final point is that a minority of people with epilepsy, advisedly or otherwise, simply do not want the kind of participatory care advocated by Scambler; rather, they want to h e a r t h e - - p a t e r n a l i s t - - v o i c e of medicine loud and clear. Consider the taking of antiepileptic drugs for example. Consonant with his own work with Schneider on self-regulators, Conrad has argued that 'framing the problem as self-regulation rather t h a n compliance allows us to see modifying medication practice as a vehicle for asserting some control over epilepsy'. In the same vein Buchanan estimates t h a t 75% of his patients show a willingness to assume responsibility for their medication. In each of their respective studies, however, these authors found sizeable minorities of patients who shied away from any such active involvem e n t in the m a n a g e m e n t of their seizures. The fact that a significant minority of patients do not want (at least some aspects of) care judged here to be of 'good quality' raises the whole issue of the less-than-straightfor-
ward link between good quality care and patient satisfaction; but this is a topic for another paper.
CONCLUSION A brief attempt has been made in this paper to characterize patient perceptions of epilepsy and of the t r e a t m e n t and care they receive at the hands of physicians. Use was made of the distinction between patients' lay perspectives on epilepsy, representing the voice of the lifeworld, and the professional perspective on epilepsy, representing the voice of medicine. Both, in their different ways, it was suggested, are voices of expertise. The potential for clashes between these perspectives, and the putative requirement on the physicians' part to engage with their patients' perspectives, were discussed with reference to a particular subset of criteria of good quality care. It is said to be a propitious time for improving the quality of epilepsy care. As m a n y recent articles in Seizure testify there are some exciting scientific and clinical developments, from radical polypharmacy to innovatory surgery 37. Many hospital specialists and some general practitioners are beginning to pay more serious and systematic attention to the likely psychosocial ramifications of epilepsy (which they have of course known about through their clinical practice for m a n y a decade). With the new and urgent emphasis on audit there are moves too to involve patients in evaluating care, often through measures of patient satisfaction. This is a welcome development. It bears repetition, however, that patient satisfaction is a complex concept: patients can be satisfied with poor quality care and dissatisfied with good quality care. Around this concept, as around others in this field, there is a great deal more work to be done.
REFERENCES 1. Duncan, J. Modern treatment strategies for patients with epilepsy: A review: Journal of the Royal Society of Medicine 1991; 84: 159-162. 2. Hopkins, A., Menken, M. and DeFriesse, G. A record of patient encounters in neurological practice in the United Kingdom. Journal of Neurology, Neurosurgery and Psychiatry, 1989; 52: 436-438, 3. Annegers, J., Hauser, W. and Everbalk, L. Remission of seizures and relapse in patients with epilepsy. Epilepsia 1979; 20: 729-737.
Perceptions of epilepsy 4. Griffin, J. and Wyles, M. Epilepsy: Towards Tomorrow. Office of Health Economics. 1991. 5. Jarvis, S., Espie, O. and Brodie, M. The development of a questionnaire'to assess knowledge of epilepsy: 1 general knowledge of epilepsy. Seizure 1993; 2: 179186. 6. Jarvis, S., Espie, O. and Brodie, M. The development of a questionnaire to assess knowledge of epilepsy: 2 - knowledge of one's own condition. Seizure 1993; 2: 187-194. 7. Scambler, G. Epilepsy. London, Tavistock/Routledge, 1989. 8. Ryan, R., Kempner, K. and Emlen, A. The stigma of epilepsy as a self-concept. Epilepsia 1980; 13: 433-444. 9. Scambler, G. and Hopkins, A. Being epileptic: coming to terms with stigma. Sociology of Health and Illness 1986; 8: 26-43. 10. Jacoby, A. Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy. Social Science and Medicine 1992; 36: 657666. 11. Jacoby, A. Felt versus enacted stigma: a concept revisited. Social Science and Medicine 1994; 38: 269-274. 12. Blaxter, M. The Meaning of Disability: A Sociological Study of Impairment. London, Heinemann, 1976. 13. Locker, D. Disability and Disadvantage: the Consequences of Chronic Illness. London, Tavistock, 1983. 14. Sander, J., Hart, Y., Johnson, A. and Shorvon. S. National general practice study of epilepsy: newly diagnosed epileptic seizures in a general population. Lancet 1990; 336: 1267-1271. 15. Tavriger, R. Some parental theories about the cause of epilepsy. Epilepsia 1966; 7: 339-342. 16. Freidson, E. Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York, Russell Sage Foundation, 1970. 17. Goffman, E. Stigma: The Management of Spoiled Identity. Harmondsworth, Penguin, 1963. 18. Schneider, J. and Conrad, P. Medical and sociological typologies: the case of epilepsy. Social Science and Medicine 1981; 15A: 211-219. 19. West, P. Becoming disabled: perspectives on the labelling approach. In: Stress and Stigma: Explanation and Evidence in the Sociology of Crime and Illness. (Eds U. Gerhardt, M. Wadsworth.) London, Macmillan, 1985. 20. Scambler, G. Coping with epilepsy. In: A Textbook of Epilepsy (4th edition) (Eds J. Laidlaw, A. Richens and D. Chadwick, London, Churchill Livingstone, 1993.
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21. Parsons, T. The Social System. London, Routledge and Kegan Paul, 1951. 22. Stimson. G. and Webb, B. Going to See the Doctor." The Consultation Process in General Practice. London, Routledge and Kegan Paul, 1975. 23. Hopkins, A. and Scambler, G. How doctors deal with epilepsy. Lancet 1977; 1: 183-186. 24. Lloyd Jones, A. Medical audit of the care of patients with epilepsy in one group practice. Journal of the Royal College of General Practitioners 1980; 30: 396400. 25. Chappell, B. Epilepsy: patient views on their condition and treatment. Seizure 1992; 1: 103-109. 26. Jain, P., Patterson, V. and Morrow, J. What people with epilepsy want from a hospital clinic. Seizure 1993; 2: 75-78. 27. Buchanan, N. Noncompliance with medication amongst persons attending a tertiary referral epilepsy clinic: implications, management and outcome. Seizure 1993; 2: 79-82. 28. Trostle, J. Doctors' orders and patients' self interest: two views of medication usage? Epilepsy Research 1988; 9: 57-69. 29. Schneider, J. and Conrad, P. Having Epilepsy: the Experience and Control of Illness. Philadelphia, Temple University Press, 1983. 30. Mischler, E. Disclosure of Medicine: Dialectics of Medical Interviews. Norwood, NJ, Ablex, 1984. 31. Scambler, G. Social factors and quality of life and quality of care in epilepsy. In: Quality of Life and Quality of Care in Epilepsy. (Ed. D. Chadwick.) London, Royal Society of Medicine Services, 1990. 32. Scambler, G. Epilepsy and quality of life research. Journal of the Royal Society of Medicine 1993; 86: 449450. 33. Chadwick, D. Epilepsy. Journal of Neurology, Neurosurgery and Psychiatry 1994; 57: 264-277. 34. Brown, S., Betts, T., Chadwick, D., Halls, B., Shorvon, S. and Wallace, S. An epilepsy needs document. Seizure 1993: 2: 91-103. 35. Betts, T. and Smith, K. Epilepsy: a window of opportunity open at last--but for how long? Seizure 1994; 3: 1-4. 36. Davies, D. and Scambler, G. Attitudes towards epilepsy in general practice. International Journal of SocialPsychiatry 1988; 34: 5-12. 37. Brown, S. and Betts, T. Epilepsy--a time for change? Seizure 1994; 3: 5-11.