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Epilepsy in Our World: An Ethnographic View
Epilepsy & Behavior 1, 169 –175 (2000) doi:10.1006/ebeh.2000.0065, available online at http://www.idealibrary.com on
Epilepsy in Our World: An Ethnographic View Lisa Francesca Andermann, M.Phil, MDCM 1 Department of Psychiatry, University of Toronto, Toronto, Canada Received January 3, 2000; revised April 25, 2000; accepted for publication May 15, 2000
This paper describes how epilepsy is viewed according to biomedicine and the scientific literature and argues that the subjective experience of people dealing with illness is often overlooked by focusing solely on this approach. A review of the pertinent literature from a social science perspective, mainly anthropology and sociology, illustrates the richness of the lived experience of epilepsy that can be uncovered by using ethnographic and other qualitative methods, including narrative studies, in the interest of informing medical practice and leading to a better understanding and treatment of people with this disorder. © 2000 Academic Press Key Words: epilepsy; seizures; social aspects; culture; anthropology; ethnography; narrative; subjectivity.
What, for example, was now going on in his brain? If only one could see all the physical and chemical changes! Nerves trembled, cells moved, substances blended. The few words that Madame Bielikov had written had started a turmoil in his marrow, blood, stomach, sex organs. Not only the brain but every part of the human body reacted to symbols. . . .
anthropology and sociology pertaining to the epilepsies. This essay reviews some of the contributions of the medical anthropological literature and attempts to answer the following questions: How do anthropologists view epilepsy? What about the other social sciences? How is epilepsy viewed in the sphere of biomedicine? And how can an anthropological approach to the study of epilepsy inform medical practice and lead to a better understanding of persons with this disorder? Epilepsy is thought to have multifactorial theories of causation based in the brain with a variety of different forms of expression and levels of severity, an episodic and recurrent course during which long-term pharmacological treatment generally plays an important role and, perhaps most importantly for this discussion, an altered state of consciousness or altered perceptions occurring during a seizure which lead to differences in one’s subjective experience of the world (3). In addition, people with these disorders have often been marginalized within their societies, and have had reduced opportunities for education, employment, marriage, and social relationships (4 – 6). There has been a lot of effort on the part of epilepsy support groups to educate people with epilepsy and their families, as well as health providers and the general public, in an effort to counteract the stigma frequently associated with this disorder. It is hoped that describing some of the different experiences with the epilep-
Ezriel remarked that, in the broad sense, knowledge of the brain included all the sciences, all the arts, all thoughts and feelings. We study the psyche even when we are studying Latin or tailoring. Isaac Bashevis Singer, referring to Ezriel Babad, fictional 19th-century neurologist in his novel, The Manor (1)
INTRODUCTION Epilepsy, with its centuries of history dating back through recorded medical writings and oral tradition, has long been a subject of inquiry in the medical sciences as well as in works of art, literature, and religion (2). However, it is only in this century that the study of epilepsy has entered the sphere of social sciences and there is a growing body of literature in 1 To whom correspondence should be addressed 146 Clinton Street, Unit E, Toronto, Ontario M6G 2Y3, Canada. E-mail: [email protected].
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170 sies will stimulate further thought about the varieties of illness experience. These principles are well known to those working in the field of epilepsy, but the basic points bear restating. Epilepsy is a common neurological disorder affecting adults and children around the world, and has been the subject of a range of diverse beliefs and practices relating to its causes and treatment which correspond to the heterogeneity of cultures and places in which it occurs. A description of some of these models of epilepsy from Africa, Asia, India, South America, and the Middle East is detailed in a review article that also examines the social impact of this illness on individuals, families, and communities (5). Despite the great differences between these cultures and settings, some generalizations can be made and traditional beliefs about epilepsy can be grouped into four main themes: epilepsy as a punishment for sin, epilepsy as bewitchment or possession, epilepsy as a contagious disease, and epilepsy as a disease of the brain (7). One or more of these beliefs can often be held simultaneously, for example, when people rely on both traditional and biomedical forms of healing. It is as informative to examine the similarities in illness beliefs that are found between widely varying social circumstances as to study the differences to gain an appreciation of the way people cope with and respond to their experiences with epilepsy.
THE WORLD OF EPILEPSY ACCORDING TO BIOMEDICINE Epilepsy is an umbrella term for a panoply of seizure types, auras, epileptic syndromes, memory deficits, postictal confusion, hallucinations, and other associated behaviors as well as electroencephalographic findings (8). The etiology of epilepsy involves various combinations of genetic and environmental factors that lead to differential prevalence rates in different settings, usually affecting between 0.5 and 5% of the population, with higher values in developing countries (9). Another striking figure is the 80 –94% treatment gap observed for instance in Pakistan, Ecuador, and the Philippines as examples of the situation in three developing countries that is probably similar elsewhere (10). Epilepsy has been identified as an important problem for world mental health, and is ranked fifth among neuropsychiatric disorders (10). The disabilityadjusted life year (DALY), which measures the global burden of disease using data for both morbidity and Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Lisa Francesca Andermann
mortality, gives a more accurate picture of illnessrelated suffering than traditional measures. However, the individual perspective is left out of these calculations as well. The use of case study material, as shown throughout the World Mental Health Report (10), is important in reintroducing the human factor to these numbers. While these inequalities are disheartening, improvements in public health and primary care facilities that can offer safer maternity procedures to reduce rates of birth injury, preventing childhood illnesses that can lead to febrile convulsions, treating infectious causes of seizures such as malaria, meningitis, sleeping sickness, tuberculosis, and cysticercosis, and building better roads to decrease rates of head injury, are important means of reducing the incidence of epilepsy in these areas (11). This should ideally occur in conjunction with an accessible and affordable epilepsy treatment program that will be available to everyone. Much has been written in the past decade about the implementation of community-based treatment and prevention programs for epilepsy in developing countries (10, 12–14). On a wider social scale, economic factors such as the availability of health care, the costs of pharmacotherapy and diagnostic technologies, the availability of treatment, and political factors such as the creation of health-related legislation and social programs all contribute to the environment in which persons with epilepsy must function and are thus inseparable from an analysis of outcome. While some of these issues are most obvious in the developing world, where inequalities in health care actually contribute to higher rates of epilepsy in some populations, they are pertinent in all situations. To quote physician and anthropologist Farmer, “thus do fundamentally social forces and processes come to be embodied as biological events” (15). The scientific literature on epilepsy has been increasingly focused on the microscopic worlds of brain receptors, neurotransmitters and cell membranes, molecular genetics, the latest pharmacology and treatment regimens with anticonvulsant medications, and the newest imaging devices. What was once a diagnosis based on clinical acumen and a basic electroencephalogram (EEG) has now spawned a technological revolution. Epilepsy treatments now also include surgery when there is a localized seizure focus, and this has made it possible to eliminate or greatly reduce seizure frequency in many cases (16). The preoperative workup and intraoperative procedures have been enormously refined over the past 50 years and now
Ethnographic View of Epilepsy
rely on the latest imaging and brain recording techniques. While there is an important body of work on the psychosocial aspects of epilepsy (17, 18), this has focused mainly on issues such as coping and adjustment to seizures, individual and family reactions to the diagnosis, employment or rehabilitation, safety issues, as well as lifestyle modifications, including coping with driving restrictions. These data are based largely on guidelines for the nonpharmacological or treatment aspects of the disorder, and are often dealt with by psychologists and social workers on the treatment team. The assessment of quality-of-life issues in epilepsy is a growing area of biomedical research dealing with quantitative subjective assessments in the form of standardized questionnaires and Likert-scale measures (19 –21). While these studies serve an important function in focusing on the subjective experience of illness, the impact of disease, social factors such as work and marriage, and satisfaction with treatment, they are limited by their focus on quantifiable measures and therefore cannot encompass individual experiences which may be very meaningful in understanding outcomes. There is also little or no mention of the ethnic background of the participants in many of these studies. Most of the published work on quality of life in epilepsy refers to relatively small groups of patients attending hospitals with specialized epilepsy clinics or tertiary referral centers, and thus is subject to potential problems of selection bias, although perhaps to a lesser degree than is thought to occur in qualitative research. One exception is the community study described by Jacoby et al. in the United Kingdom (20). In an attempt to correct some of these shortfalls, Gilliam et al. studied the content validity of an epilepsyspecific quality-of-life measurement that was built on with patient-generated concerns (22). This study, which took place in the United States, was sensitive to the ethnic background of the participants, although the data were not analyzed according to these categories. Cultural differences were thought to play an important role in explaining differences between this cohort and others in similar projects elsewhere, but further studies and cross-cultural validation were recommended. The evaluation of outcomes following epilepsy surgery has been a major impetus for quality-of-life research (23–25), and showed that a successful outcome was related to many factors other than seizure frequency or continued use of medication. This was best
171 demonstrated in a prospective study by Wilson et al. (1998) that compared preoperative expectations with perceived success of the operation. They found that patients with “practical” expectations of the surgery, such as changes in driving, work, and activities, were more satisfied afterward than those who expected social changes or improved relationships (25). This study illustrates the role of individual psychological factors in outcome measures. While the focus in biomedical research tends toward the determination of quantifiable data using scientific methods, it is equally important to acknowledge that there is a well-established methodology in the anthropological and social science literature relating to qualitative research methods in general (26, 27) and narrative analysis in particular (28). The thorough understanding gained from a detailed and rigorous analysis of a small number of individuals who can express themselves in their own words is balanced against issues of selection bias and statistical significance that are possible only when working with larger numbers, at the expense of individual experience. Both quantitative and qualitative methods provide important information about two sides of the same coin—they complement each other and should be used concurrently. Another psychosocial issue, that of compliance, or, preferably, adherence with treatment, has been well documented, largely through the result of frustrated physicians dealing with chronic illness, including epilepsy (29), which has the added complication of involving intermittent, unpredictable attacks and therefore does not have a one-to-one correlation with taking medication on a daily basis. By using anthropological methods of long-term participant observation, Trostle et al. (30) are able to explain “the logic of noncompliance” from the patient’s point of view and illuminate their patterns of oral anticonvulsant consumption as well as a variety of alternative therapies. The striking finding in their paper is that although the seven informants were in the care of a neurologist at the time, each of the seven had individualized their treatment regimen once outside the doctor’s office and no single pattern of compliance could be identified. They conclude that these patterns are related to different conceptions of etiology and efficacy and that social forces outside the biomedical model play a large role in illness behavior, which can include many other alternatives. Therefore, one must take “the wider social world of both physician and patient into account” (30) to fully understand the isCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
172 sues of power, resources, and human behavior involved in this relationship. It is a rarity to see first-person descriptions of epilepsy in the medical literature, much of which is taken up by the description of biological and technological advances as described above, although these can provide an important opportunity for understanding the subjective experience of illness and are of great importance in all aspects of the management and treatment of epilepsy as well as being valuable sources of expression and support to those living with epilepsy. One exception to this has been the Brainstorms series— Epilepsy in Our Words (31), Epilepsy in Our View (32), and Epilepsy on Our Terms (33)—three volumes of the collected narratives of adults and children with epilepsy in the United States, as well as their families’, caretakers’, and medical providers’ experiences in dealing with this illness. These volumes have been well received by the public and professionals alike, and make an important contribution to this underrepresented genre. A fourth book in the series, Epilepsy in Our World, dealing with narratives of epilepsy in countries around the world, is currently underway (Schachter and Andermann, in preparation). In an era where the medical profession is more and more pressed for time and resources, this approach becomes much more, not less, important (34). However, as shown in the next section of the paper, to gain the greatest in-depth knowledge of the lived experience of epilepsy what is required is a social science methodology that takes into account local context as well as social, cultural, and politicoeconomic variables.
WHY NARRATIVES OF EPILEPSY ARE IMPORTANT Epilepsy is an excellent model for studying illness narratives and illness experiences because of the very nature of its symptoms, usually consisting of convulsions accompanied by loss of consciousness, but, as described above, may also include numerous variations, all of which can affect a person’s experience of the “here and now.” The multiplicity of elements that make up epilepsy translate into a diversity of experiences with this illness. Added to the layer of illness experienced by the person with epilepsy are the reactions of the family and local community, including the healers involved (biomedical, traditional, or alternative), and all of these views are critical in shaping the persons’ illness experience. Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Lisa Francesca Andermann
The best way to gain an understanding of another person’s subjective experience is through their stories (35). Although Strauss developed these ideas while writing about his struggle in dealing with the inadequacies of a mental health system that does not give enough attention to the subjectivity of people with schizophrenia, they are equally applicable to people with epilepsy. He writes that “it may be possible that the story, with its capacity to combine subjective and objective aspects of experience in a temporal context, may be the optimal organizing structure for a science of psychiatry” (35). Whether these stories deal with relationships, life changes, illness, or other difficult struggles, they inform us about the local moral worlds in which people live and what matters most to them. This goes beyond the narrow confines of “taking a history” in biomedical terms, where the goal is to elucidate symptoms—when, where, and how things started—and to make a diagnosis. Narratives represent the person’s lived experience at a local level that can then be linked to a broader social theory. In his writings on social suffering, psychiatrist and anthropologist Kleinman (36) elaborates on his ideas of experience as being intersubjective and interpersonal, and stresses the interconnections between people in everyday life that occur in a context or a social terrain that is best represented through ethnography. Local moral worlds are defined as places where “actions have cultural, political, economic, institutional and social relational sources and consequences” (37), thus providing the context that gives anthropological research its capacity for depth and understanding of a particular locale. The presence of individual voices of people with epilepsy in the growing ethnographic and social science literature can be considered a starting point from which one can begin to understand the range of people’s experiences with epilepsy. They form an important counterpoint to the growing international body of epidemiological data on this illness, which, while of great importance, is measured on a societal level and leaves out the richness of the local experience. An ethnographic study of epilepsy in Turkey by Good and DelVecchio Good (38) illustrates the multiple perspectives that are maintained by patients and their families searching for treatment. The illness narrative itself is shown to change depending on the tellers and the listeners both, for example, whether these are family members, neighbors, or doctors. The flexibility and openendedness found in their storytelling allows for a degree of optimism in a life overshadowed by the quest for a cure.
Ethnographic View of Epilepsy
In Kleinman’s ethnographic work on epilepsy in China (39), a significant finding was that the effect of this illness on the person extended beyond the affected individual alone to include their family as well, corresponding to the sociosomatic rather than individualistic nature of Chinese society. This was characterized as “moral blame” and was noted to be a very different situation from the stigma based on the experience of an individual with an illness or disability in the West. His group also observed that “the social course of epilepsy, furthermore, is plural, heterogeneous and changing. It is as distinctive as are different local worlds, different social networks, different social histories” (39), reinforcing the importance of local context and experience. Weisner (40) describes ethnography as creating “findings that matter,” where the adaptive projects of individuals and communities are examined to see how people try to accomplish their goals in their cultural world. By doing fieldwork and studying relationships that are embedded in a local community one can make “explicit” the taken-for-granted or “implicit” pieces of our daily lives. A recent book by Fadiman (41) entitled “The Spirit Catches You and You Fall Down,” in which she describes the struggles of a Hmong immigrant family with their daughter’s severe form of epilepsy and the biomedical system encountered in emergency rooms and intensive care units in California, is an excellent example of documenting a local world. She shows how “voice” can be given to families and health care workers who face a situation side by side but are unable to communicate with each other, and leads us through the ultimately tragic story of failed negotiations and cultural misunderstandings. Geertz (42) refers to the issue of subjectivity as “seeing things from the native’s point of view.” He used Kohut’s psychoanalytic concepts of “experience near” and “experience distant” to illustrate how anthropology can best “produce an interpretation of the way a people lives which is neither imprisoned within their mental horizons, an ethnography of witchcraft as written by a witch, nor systematically deaf to the distinctive tonalities of their existence, an ethnography of witchcraft as written by geometer” (40). The goal is to get as close as possible to an understanding of the self while taking into account both the person’s local world and wider social horizons. Following from the influence of Foucault’s analysis of power and the body, Mentore (43) conceptualizes the moment of an epileptic seizure as a “dramatic case of powerlessness,” with wide-ranging social effects. He describes the experience of a young Waiwai man
173 with epilepsy living in an Amerindian village near the Guyanese–Brazilian border, who is marginalized on account of his seizures which have prevented him from marrying and thus taking part in adult society. Epilepsy is interpreted here as an “instance of cultural violence, as a traced meaning for bodily pain and as an identifiable obstacle to the fulfillment of a desired social biography” (43). For the Waiwai, this is symbolized by the image of the person with epilepsy writhing on the ground like a wormlike larva that will never undergo metamorphosis to reach the highest celestial levels in the cosmos, represented by men wearing feather displays to express the act of flight. While this description of a seizure certainly does not lack drama and is placed well within a particular context, one gets the sense that theory has a stranglehold in this case and that the everyday reality as told through the young man’s own words, or those of his mother who still cared for him, may be quite different. As illustrated by Trostle et al. (30), cultural beliefs about illness play an important role in the individualization of treatment regimens, and reliance on alternative therapies is shown to be a prevalent practice, even in a North American metropolis such as New York City. Beliefs about illness and treatment should therefore be addressed by treatment teams in all health care settings, and are an important step in improving doctor–patient communication. Without the contributions of an ethnographic methodology like the one involved in the previous study, findings such as these and others that can shed light on illness beliefs and practices and the subjective experience of illness would not be possible to the same extent. Qualitative studies also allow for a deeper understanding of the heterogeneity of experiences with epilepsy, a disorder that occurs in a wide variety of forms and encompasses a broad range of severity. Among sociologists, epilepsy has also been a popular research topic (44, 45). Their use of qualitative data analysis has focused on different interpretations of epilepsy and its meanings by looking at the interpretation of bodily phenomena and the social construction of illness. Nijhof (44) argues in his study of 20 life stories of people with epilepsy that it is a heterogeneous construction, even within the interpretation of one individual, and that these can be categorized into three groups, using the language of medical discourse (epilepsy as disease) and terms referring to normality and abnormality. Faircloth (45) focuses on three epilepsy narratives to show that the discontinuities inherent within epilepsy as an illness category lead to different and unique experiences of the condiCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
174 tion. While individual voices are heard throughout these two papers, what is of concern to me is that the life narratives in these studies are often presented with a paucity of the personal and cultural background and context that give ethnographic studies their depth. In fact, the methods sections of both these papers leave many questions unanswered as to recruitment of informants, degree of illness severity (for example, as measured by seizure frequency), their current social and occupational functioning, quality of family relationships, and social networks. Taking a more holistic approach, Iphofen (46) expands on Goffman’s stigma model with its focus on the ways individuals with illness or disabilities manage their identities in different social settings and control information about their condition when dealing with others. Iphofen, citing Denzin, believes that using a life history method can most closely achieve a humanistic or social phenomenological approach and that studying subjective experiences should be the foundation of sociology. His case study presents the life history of one woman with absence epilepsy from her childhood years, when her seizures first began, through her difficult school years during which her condition was eventually diagnosed, and her working life, marriage, and motherhood, using copious narrative excerpts in her own words from her diaries and extensive interviews. His informant describes her experience with epilepsy as a “perforated existence,” the expression she has chosen to describe the effects of her brief attacks of loss of consciousness, which while lasting only a few seconds occurred at one point up to 50 times per day, creating numerous interruptions in social interactions and conversations and necessitating constant vigilance and monitoring of a “fac¸ade.” It is this skill of social management that becomes critical at times of increased stress or change in environment, such as starting a new school or a new job or simply being in the company of others who are not aware of the disorder, to protect the individual from possible rejection and suffering.
Lisa Francesca Andermann
basic sciences, pharmacology, neurogenetics, diagnostic monitoring and imaging, clinical management, and neurosurgical approaches referred to earlier. However, as emphasized in the latter half of this paper, the effects of these therapies can be truly assessed only in a local context, where an individual managing his or her illness faces constraints, both internal and external, challenges, and, it is hoped, supports that make dealing with the disorder more manageable. There are numerous epidemiological and quantitative studies of epilepsy from around the world that contribute important statistical knowledge along with some information that is specific to each locale; these can be considered some of the basic data on which treatment programs and public health projects can be developed—the skeleton. The medical and surgical literature provides the ever-expanding body of knowledge from which to proceed, with the goal of helping to control seizures and improve people’s lives. What should not be forgotten in this process is the inclusion of the subjective experience of epilepsy, not only of the illness itself, but also of its treatment. This is what gives meaning to the entire endeavor, and should not be overlooked. There is a history of such an approach in the development of modern epileptology in the writing of Lennox (47) who was always attuned to the emotional and social experience of his patients and their families. A joining of the biomedical and social sciences in this effort should lead to improved adaptation and reduce the burden of epilepsy.
ACKNOWLEDGMENTS I thank Dr. Arthur Kleinman and Dr. Pamela Collins for their very helpful comments and suggestions on reading an earlier draft of this paper.
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CONCLUSION There have been many important advances in the diagnosis and treatment of epilepsy in the past few decades that have dramatically improved the lives of many people with this disorder, allowing them to partake fully in all aspects of life, including education, employment, and family life. This would not have been possible without the numerous discoveries in the Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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Epilepsy in Our World: An Ethnographic View Lisa Francesca Andermann, M.Phil, MDCM 1 Department of Psychiatry, University of Toronto, Toronto, Canada Received January 3, 2000; revised April 25, 2000; accepted for publication May 15, 2000
This paper describes how epilepsy is viewed according to biomedicine and the scientific literature and argues that the subjective experience of people dealing with illness is often overlooked by focusing solely on this approach. A review of the pertinent literature from a social science perspective, mainly anthropology and sociology, illustrates the richness of the lived experience of epilepsy that can be uncovered by using ethnographic and other qualitative methods, including narrative studies, in the interest of informing medical practice and leading to a better understanding and treatment of people with this disorder. © 2000 Academic Press Key Words: epilepsy; seizures; social aspects; culture; anthropology; ethnography; narrative; subjectivity.
What, for example, was now going on in his brain? If only one could see all the physical and chemical changes! Nerves trembled, cells moved, substances blended. The few words that Madame Bielikov had written had started a turmoil in his marrow, blood, stomach, sex organs. Not only the brain but every part of the human body reacted to symbols. . . .
anthropology and sociology pertaining to the epilepsies. This essay reviews some of the contributions of the medical anthropological literature and attempts to answer the following questions: How do anthropologists view epilepsy? What about the other social sciences? How is epilepsy viewed in the sphere of biomedicine? And how can an anthropological approach to the study of epilepsy inform medical practice and lead to a better understanding of persons with this disorder? Epilepsy is thought to have multifactorial theories of causation based in the brain with a variety of different forms of expression and levels of severity, an episodic and recurrent course during which long-term pharmacological treatment generally plays an important role and, perhaps most importantly for this discussion, an altered state of consciousness or altered perceptions occurring during a seizure which lead to differences in one’s subjective experience of the world (3). In addition, people with these disorders have often been marginalized within their societies, and have had reduced opportunities for education, employment, marriage, and social relationships (4 – 6). There has been a lot of effort on the part of epilepsy support groups to educate people with epilepsy and their families, as well as health providers and the general public, in an effort to counteract the stigma frequently associated with this disorder. It is hoped that describing some of the different experiences with the epilep-
Ezriel remarked that, in the broad sense, knowledge of the brain included all the sciences, all the arts, all thoughts and feelings. We study the psyche even when we are studying Latin or tailoring. Isaac Bashevis Singer, referring to Ezriel Babad, fictional 19th-century neurologist in his novel, The Manor (1)
INTRODUCTION Epilepsy, with its centuries of history dating back through recorded medical writings and oral tradition, has long been a subject of inquiry in the medical sciences as well as in works of art, literature, and religion (2). However, it is only in this century that the study of epilepsy has entered the sphere of social sciences and there is a growing body of literature in 1 To whom correspondence should be addressed 146 Clinton Street, Unit E, Toronto, Ontario M6G 2Y3, Canada. E-mail: [email protected].
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170 sies will stimulate further thought about the varieties of illness experience. These principles are well known to those working in the field of epilepsy, but the basic points bear restating. Epilepsy is a common neurological disorder affecting adults and children around the world, and has been the subject of a range of diverse beliefs and practices relating to its causes and treatment which correspond to the heterogeneity of cultures and places in which it occurs. A description of some of these models of epilepsy from Africa, Asia, India, South America, and the Middle East is detailed in a review article that also examines the social impact of this illness on individuals, families, and communities (5). Despite the great differences between these cultures and settings, some generalizations can be made and traditional beliefs about epilepsy can be grouped into four main themes: epilepsy as a punishment for sin, epilepsy as bewitchment or possession, epilepsy as a contagious disease, and epilepsy as a disease of the brain (7). One or more of these beliefs can often be held simultaneously, for example, when people rely on both traditional and biomedical forms of healing. It is as informative to examine the similarities in illness beliefs that are found between widely varying social circumstances as to study the differences to gain an appreciation of the way people cope with and respond to their experiences with epilepsy.
THE WORLD OF EPILEPSY ACCORDING TO BIOMEDICINE Epilepsy is an umbrella term for a panoply of seizure types, auras, epileptic syndromes, memory deficits, postictal confusion, hallucinations, and other associated behaviors as well as electroencephalographic findings (8). The etiology of epilepsy involves various combinations of genetic and environmental factors that lead to differential prevalence rates in different settings, usually affecting between 0.5 and 5% of the population, with higher values in developing countries (9). Another striking figure is the 80 –94% treatment gap observed for instance in Pakistan, Ecuador, and the Philippines as examples of the situation in three developing countries that is probably similar elsewhere (10). Epilepsy has been identified as an important problem for world mental health, and is ranked fifth among neuropsychiatric disorders (10). The disabilityadjusted life year (DALY), which measures the global burden of disease using data for both morbidity and Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Lisa Francesca Andermann
mortality, gives a more accurate picture of illnessrelated suffering than traditional measures. However, the individual perspective is left out of these calculations as well. The use of case study material, as shown throughout the World Mental Health Report (10), is important in reintroducing the human factor to these numbers. While these inequalities are disheartening, improvements in public health and primary care facilities that can offer safer maternity procedures to reduce rates of birth injury, preventing childhood illnesses that can lead to febrile convulsions, treating infectious causes of seizures such as malaria, meningitis, sleeping sickness, tuberculosis, and cysticercosis, and building better roads to decrease rates of head injury, are important means of reducing the incidence of epilepsy in these areas (11). This should ideally occur in conjunction with an accessible and affordable epilepsy treatment program that will be available to everyone. Much has been written in the past decade about the implementation of community-based treatment and prevention programs for epilepsy in developing countries (10, 12–14). On a wider social scale, economic factors such as the availability of health care, the costs of pharmacotherapy and diagnostic technologies, the availability of treatment, and political factors such as the creation of health-related legislation and social programs all contribute to the environment in which persons with epilepsy must function and are thus inseparable from an analysis of outcome. While some of these issues are most obvious in the developing world, where inequalities in health care actually contribute to higher rates of epilepsy in some populations, they are pertinent in all situations. To quote physician and anthropologist Farmer, “thus do fundamentally social forces and processes come to be embodied as biological events” (15). The scientific literature on epilepsy has been increasingly focused on the microscopic worlds of brain receptors, neurotransmitters and cell membranes, molecular genetics, the latest pharmacology and treatment regimens with anticonvulsant medications, and the newest imaging devices. What was once a diagnosis based on clinical acumen and a basic electroencephalogram (EEG) has now spawned a technological revolution. Epilepsy treatments now also include surgery when there is a localized seizure focus, and this has made it possible to eliminate or greatly reduce seizure frequency in many cases (16). The preoperative workup and intraoperative procedures have been enormously refined over the past 50 years and now
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rely on the latest imaging and brain recording techniques. While there is an important body of work on the psychosocial aspects of epilepsy (17, 18), this has focused mainly on issues such as coping and adjustment to seizures, individual and family reactions to the diagnosis, employment or rehabilitation, safety issues, as well as lifestyle modifications, including coping with driving restrictions. These data are based largely on guidelines for the nonpharmacological or treatment aspects of the disorder, and are often dealt with by psychologists and social workers on the treatment team. The assessment of quality-of-life issues in epilepsy is a growing area of biomedical research dealing with quantitative subjective assessments in the form of standardized questionnaires and Likert-scale measures (19 –21). While these studies serve an important function in focusing on the subjective experience of illness, the impact of disease, social factors such as work and marriage, and satisfaction with treatment, they are limited by their focus on quantifiable measures and therefore cannot encompass individual experiences which may be very meaningful in understanding outcomes. There is also little or no mention of the ethnic background of the participants in many of these studies. Most of the published work on quality of life in epilepsy refers to relatively small groups of patients attending hospitals with specialized epilepsy clinics or tertiary referral centers, and thus is subject to potential problems of selection bias, although perhaps to a lesser degree than is thought to occur in qualitative research. One exception is the community study described by Jacoby et al. in the United Kingdom (20). In an attempt to correct some of these shortfalls, Gilliam et al. studied the content validity of an epilepsyspecific quality-of-life measurement that was built on with patient-generated concerns (22). This study, which took place in the United States, was sensitive to the ethnic background of the participants, although the data were not analyzed according to these categories. Cultural differences were thought to play an important role in explaining differences between this cohort and others in similar projects elsewhere, but further studies and cross-cultural validation were recommended. The evaluation of outcomes following epilepsy surgery has been a major impetus for quality-of-life research (23–25), and showed that a successful outcome was related to many factors other than seizure frequency or continued use of medication. This was best
171 demonstrated in a prospective study by Wilson et al. (1998) that compared preoperative expectations with perceived success of the operation. They found that patients with “practical” expectations of the surgery, such as changes in driving, work, and activities, were more satisfied afterward than those who expected social changes or improved relationships (25). This study illustrates the role of individual psychological factors in outcome measures. While the focus in biomedical research tends toward the determination of quantifiable data using scientific methods, it is equally important to acknowledge that there is a well-established methodology in the anthropological and social science literature relating to qualitative research methods in general (26, 27) and narrative analysis in particular (28). The thorough understanding gained from a detailed and rigorous analysis of a small number of individuals who can express themselves in their own words is balanced against issues of selection bias and statistical significance that are possible only when working with larger numbers, at the expense of individual experience. Both quantitative and qualitative methods provide important information about two sides of the same coin—they complement each other and should be used concurrently. Another psychosocial issue, that of compliance, or, preferably, adherence with treatment, has been well documented, largely through the result of frustrated physicians dealing with chronic illness, including epilepsy (29), which has the added complication of involving intermittent, unpredictable attacks and therefore does not have a one-to-one correlation with taking medication on a daily basis. By using anthropological methods of long-term participant observation, Trostle et al. (30) are able to explain “the logic of noncompliance” from the patient’s point of view and illuminate their patterns of oral anticonvulsant consumption as well as a variety of alternative therapies. The striking finding in their paper is that although the seven informants were in the care of a neurologist at the time, each of the seven had individualized their treatment regimen once outside the doctor’s office and no single pattern of compliance could be identified. They conclude that these patterns are related to different conceptions of etiology and efficacy and that social forces outside the biomedical model play a large role in illness behavior, which can include many other alternatives. Therefore, one must take “the wider social world of both physician and patient into account” (30) to fully understand the isCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
172 sues of power, resources, and human behavior involved in this relationship. It is a rarity to see first-person descriptions of epilepsy in the medical literature, much of which is taken up by the description of biological and technological advances as described above, although these can provide an important opportunity for understanding the subjective experience of illness and are of great importance in all aspects of the management and treatment of epilepsy as well as being valuable sources of expression and support to those living with epilepsy. One exception to this has been the Brainstorms series— Epilepsy in Our Words (31), Epilepsy in Our View (32), and Epilepsy on Our Terms (33)—three volumes of the collected narratives of adults and children with epilepsy in the United States, as well as their families’, caretakers’, and medical providers’ experiences in dealing with this illness. These volumes have been well received by the public and professionals alike, and make an important contribution to this underrepresented genre. A fourth book in the series, Epilepsy in Our World, dealing with narratives of epilepsy in countries around the world, is currently underway (Schachter and Andermann, in preparation). In an era where the medical profession is more and more pressed for time and resources, this approach becomes much more, not less, important (34). However, as shown in the next section of the paper, to gain the greatest in-depth knowledge of the lived experience of epilepsy what is required is a social science methodology that takes into account local context as well as social, cultural, and politicoeconomic variables.
WHY NARRATIVES OF EPILEPSY ARE IMPORTANT Epilepsy is an excellent model for studying illness narratives and illness experiences because of the very nature of its symptoms, usually consisting of convulsions accompanied by loss of consciousness, but, as described above, may also include numerous variations, all of which can affect a person’s experience of the “here and now.” The multiplicity of elements that make up epilepsy translate into a diversity of experiences with this illness. Added to the layer of illness experienced by the person with epilepsy are the reactions of the family and local community, including the healers involved (biomedical, traditional, or alternative), and all of these views are critical in shaping the persons’ illness experience. Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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The best way to gain an understanding of another person’s subjective experience is through their stories (35). Although Strauss developed these ideas while writing about his struggle in dealing with the inadequacies of a mental health system that does not give enough attention to the subjectivity of people with schizophrenia, they are equally applicable to people with epilepsy. He writes that “it may be possible that the story, with its capacity to combine subjective and objective aspects of experience in a temporal context, may be the optimal organizing structure for a science of psychiatry” (35). Whether these stories deal with relationships, life changes, illness, or other difficult struggles, they inform us about the local moral worlds in which people live and what matters most to them. This goes beyond the narrow confines of “taking a history” in biomedical terms, where the goal is to elucidate symptoms—when, where, and how things started—and to make a diagnosis. Narratives represent the person’s lived experience at a local level that can then be linked to a broader social theory. In his writings on social suffering, psychiatrist and anthropologist Kleinman (36) elaborates on his ideas of experience as being intersubjective and interpersonal, and stresses the interconnections between people in everyday life that occur in a context or a social terrain that is best represented through ethnography. Local moral worlds are defined as places where “actions have cultural, political, economic, institutional and social relational sources and consequences” (37), thus providing the context that gives anthropological research its capacity for depth and understanding of a particular locale. The presence of individual voices of people with epilepsy in the growing ethnographic and social science literature can be considered a starting point from which one can begin to understand the range of people’s experiences with epilepsy. They form an important counterpoint to the growing international body of epidemiological data on this illness, which, while of great importance, is measured on a societal level and leaves out the richness of the local experience. An ethnographic study of epilepsy in Turkey by Good and DelVecchio Good (38) illustrates the multiple perspectives that are maintained by patients and their families searching for treatment. The illness narrative itself is shown to change depending on the tellers and the listeners both, for example, whether these are family members, neighbors, or doctors. The flexibility and openendedness found in their storytelling allows for a degree of optimism in a life overshadowed by the quest for a cure.
Ethnographic View of Epilepsy
In Kleinman’s ethnographic work on epilepsy in China (39), a significant finding was that the effect of this illness on the person extended beyond the affected individual alone to include their family as well, corresponding to the sociosomatic rather than individualistic nature of Chinese society. This was characterized as “moral blame” and was noted to be a very different situation from the stigma based on the experience of an individual with an illness or disability in the West. His group also observed that “the social course of epilepsy, furthermore, is plural, heterogeneous and changing. It is as distinctive as are different local worlds, different social networks, different social histories” (39), reinforcing the importance of local context and experience. Weisner (40) describes ethnography as creating “findings that matter,” where the adaptive projects of individuals and communities are examined to see how people try to accomplish their goals in their cultural world. By doing fieldwork and studying relationships that are embedded in a local community one can make “explicit” the taken-for-granted or “implicit” pieces of our daily lives. A recent book by Fadiman (41) entitled “The Spirit Catches You and You Fall Down,” in which she describes the struggles of a Hmong immigrant family with their daughter’s severe form of epilepsy and the biomedical system encountered in emergency rooms and intensive care units in California, is an excellent example of documenting a local world. She shows how “voice” can be given to families and health care workers who face a situation side by side but are unable to communicate with each other, and leads us through the ultimately tragic story of failed negotiations and cultural misunderstandings. Geertz (42) refers to the issue of subjectivity as “seeing things from the native’s point of view.” He used Kohut’s psychoanalytic concepts of “experience near” and “experience distant” to illustrate how anthropology can best “produce an interpretation of the way a people lives which is neither imprisoned within their mental horizons, an ethnography of witchcraft as written by a witch, nor systematically deaf to the distinctive tonalities of their existence, an ethnography of witchcraft as written by geometer” (40). The goal is to get as close as possible to an understanding of the self while taking into account both the person’s local world and wider social horizons. Following from the influence of Foucault’s analysis of power and the body, Mentore (43) conceptualizes the moment of an epileptic seizure as a “dramatic case of powerlessness,” with wide-ranging social effects. He describes the experience of a young Waiwai man
173 with epilepsy living in an Amerindian village near the Guyanese–Brazilian border, who is marginalized on account of his seizures which have prevented him from marrying and thus taking part in adult society. Epilepsy is interpreted here as an “instance of cultural violence, as a traced meaning for bodily pain and as an identifiable obstacle to the fulfillment of a desired social biography” (43). For the Waiwai, this is symbolized by the image of the person with epilepsy writhing on the ground like a wormlike larva that will never undergo metamorphosis to reach the highest celestial levels in the cosmos, represented by men wearing feather displays to express the act of flight. While this description of a seizure certainly does not lack drama and is placed well within a particular context, one gets the sense that theory has a stranglehold in this case and that the everyday reality as told through the young man’s own words, or those of his mother who still cared for him, may be quite different. As illustrated by Trostle et al. (30), cultural beliefs about illness play an important role in the individualization of treatment regimens, and reliance on alternative therapies is shown to be a prevalent practice, even in a North American metropolis such as New York City. Beliefs about illness and treatment should therefore be addressed by treatment teams in all health care settings, and are an important step in improving doctor–patient communication. Without the contributions of an ethnographic methodology like the one involved in the previous study, findings such as these and others that can shed light on illness beliefs and practices and the subjective experience of illness would not be possible to the same extent. Qualitative studies also allow for a deeper understanding of the heterogeneity of experiences with epilepsy, a disorder that occurs in a wide variety of forms and encompasses a broad range of severity. Among sociologists, epilepsy has also been a popular research topic (44, 45). Their use of qualitative data analysis has focused on different interpretations of epilepsy and its meanings by looking at the interpretation of bodily phenomena and the social construction of illness. Nijhof (44) argues in his study of 20 life stories of people with epilepsy that it is a heterogeneous construction, even within the interpretation of one individual, and that these can be categorized into three groups, using the language of medical discourse (epilepsy as disease) and terms referring to normality and abnormality. Faircloth (45) focuses on three epilepsy narratives to show that the discontinuities inherent within epilepsy as an illness category lead to different and unique experiences of the condiCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
174 tion. While individual voices are heard throughout these two papers, what is of concern to me is that the life narratives in these studies are often presented with a paucity of the personal and cultural background and context that give ethnographic studies their depth. In fact, the methods sections of both these papers leave many questions unanswered as to recruitment of informants, degree of illness severity (for example, as measured by seizure frequency), their current social and occupational functioning, quality of family relationships, and social networks. Taking a more holistic approach, Iphofen (46) expands on Goffman’s stigma model with its focus on the ways individuals with illness or disabilities manage their identities in different social settings and control information about their condition when dealing with others. Iphofen, citing Denzin, believes that using a life history method can most closely achieve a humanistic or social phenomenological approach and that studying subjective experiences should be the foundation of sociology. His case study presents the life history of one woman with absence epilepsy from her childhood years, when her seizures first began, through her difficult school years during which her condition was eventually diagnosed, and her working life, marriage, and motherhood, using copious narrative excerpts in her own words from her diaries and extensive interviews. His informant describes her experience with epilepsy as a “perforated existence,” the expression she has chosen to describe the effects of her brief attacks of loss of consciousness, which while lasting only a few seconds occurred at one point up to 50 times per day, creating numerous interruptions in social interactions and conversations and necessitating constant vigilance and monitoring of a “fac¸ade.” It is this skill of social management that becomes critical at times of increased stress or change in environment, such as starting a new school or a new job or simply being in the company of others who are not aware of the disorder, to protect the individual from possible rejection and suffering.
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basic sciences, pharmacology, neurogenetics, diagnostic monitoring and imaging, clinical management, and neurosurgical approaches referred to earlier. However, as emphasized in the latter half of this paper, the effects of these therapies can be truly assessed only in a local context, where an individual managing his or her illness faces constraints, both internal and external, challenges, and, it is hoped, supports that make dealing with the disorder more manageable. There are numerous epidemiological and quantitative studies of epilepsy from around the world that contribute important statistical knowledge along with some information that is specific to each locale; these can be considered some of the basic data on which treatment programs and public health projects can be developed—the skeleton. The medical and surgical literature provides the ever-expanding body of knowledge from which to proceed, with the goal of helping to control seizures and improve people’s lives. What should not be forgotten in this process is the inclusion of the subjective experience of epilepsy, not only of the illness itself, but also of its treatment. This is what gives meaning to the entire endeavor, and should not be overlooked. There is a history of such an approach in the development of modern epileptology in the writing of Lennox (47) who was always attuned to the emotional and social experience of his patients and their families. A joining of the biomedical and social sciences in this effort should lead to improved adaptation and reduce the burden of epilepsy.
ACKNOWLEDGMENTS I thank Dr. Arthur Kleinman and Dr. Pamela Collins for their very helpful comments and suggestions on reading an earlier draft of this paper.
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CONCLUSION There have been many important advances in the diagnosis and treatment of epilepsy in the past few decades that have dramatically improved the lives of many people with this disorder, allowing them to partake fully in all aspects of life, including education, employment, and family life. This would not have been possible without the numerous discoveries in the Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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