Ann McElroy & Mary Ann Jezewski. Handbook of Social Studies in Health and Medicine. Editor: Gary L Albrecht, Ray Fitzpatrick, Susan C Scrimshaw. Sage Publications, 2000.
Prevention of suffering underlies most therapeutic systems, but paradoxically, as Dostoevsky reflects, ‘man will never renounce real suffering … [which] is the sole origin of consciousness’ (1955: 140). Awareness of distress, in oneself or others, is a universal human trait, and the fundamental dichotomy of wellness versus illness may have deep evolutionary roots. Fábrega (1997: 46) argues that responses to affliction emerged in protocultural primate groups and were retained through natural selection in human evolution, leading to a sickness-healing adaptation that underlies all medical systems.
Although the capacity to respond to distress is biogenetic, criteria of abnormality, and the signs and symptoms that denote suffering, vary culturally (Csordas and Kleinman 1996). We define culture as a system of learned and shared codes or standards for perceiving, interpreting, and interacting with others and with the environment (Jezewski 1990). As a normative framework for decision making and behavioral strategies, culture is an integral component in defining and achieving a state of health, maintaining health, and treating illness.
Definitions of health are inherently subjective, influenced by the dialectic between the body and the self. Criteria of health usually include instrumental components such as the ability to work and to fulfill expected roles. For many people, environmental parameters—the ability to procure nourishing food and other resources and to live without undue hardship—also define health. Spiritual components of health are central in many cultures.
Recognizing a wide spectrum of illness and wellness definitions, and the fact that professional criteria differ from lay concepts, anthropologists find it helpful to distinguish three categories: disease (deviations from a biomedical norm), illness (the lived experience of culturally constructed categories), and sickness (patients’ roles). While disease is a central focus of biomedical practitioners, factors affecting illness and sickness, and the transformative power of illness and disability, are more pivotal concerns of social scientists.
The phenomenology of illness, focusing on the person’s experience, offers a valuable alternative to studies of disease. Phenomenological refers to ‘perspectives that are concerned with the natives’ point of view, with meaning, subjectivity, and consciousness—perspectives that account for “the phenomenon” under investigation as irreducible and autonomous in its own right’ (Kaufmann 1988: 340). In addition to eliciting the individual’s experience of health or illness, phenomenology accounts for the transformations of consciousness and self-identity that can occur in illness, disability, or trauma.
The illness experience is inextricably intertwined with the self and others across time. The responses of others are as important in the illness experience as is the interpretation of the one who is ill. ‘Illness is not only a self experience but a social, community experience. Communities affect the one who is ill just as the one who is ill affects community’ (Estroff 1993: 258). Despite the emphasis in this chapter on individual experience of health and illness in different cultures, the role of culture cannot be explained solely by studies of the self, and our level of analysis cannot be solely individual. Contextual factors are important in accounting for variation in illness experience. Class, gender, ethnicity, educational level, age, and social support especially influence risk of illness, access to care, and the probability of resolving a health problem (Harwood 1981). Environment, economic constraints, and political structures also influence health and illness (Bair and Cayleff 1993; McElroy and Townsend 1996).
This chapter focuses primarily on the personal experience of health and illness, but also links the individual level of analysis to broader community and cultural levels. We focus on multiple behavioral environments and the multiple networks that individuals form in preventing or dealing with health problems, as well as on economic and ecological factors that influence the well-being of whole communities. Methods and models traditionally used to explore personal experiences of health and illness will also be reviewed, as well as newer, multifaceted methods of research.
A Stratigraphy of Health/Illness
The experience of illness and health may be studied on several analytical levels: the individual (personal identity; biogenetic/ontogenetic traits), the microcultural (interpersonal roles and interactions; household and group traditions), and the macrocultural (cultural and transcultural systems).
The triangle representing illness experience cuts across three levels to denote that people individually and collectively respond to health problems through multiple systems. The boundaries are permeable. Communicating through ‘idioms of distress,’ culturally distinctive ways of symbolizing and imaging illness and injury, symptoms become ‘grounded in the social and cultural realities of individual patients’ (Good and Good 1980: 166-69). As people in the microcultural domain (family members, the community, health professionals) become aware of an individual’s distress through these symptoms, they try to define the problem and to effect healing. The meaning of distress also resonates into political and economic arenas when it is interpreted as related to lack of power, inadequate resources, or discriminatory policies. It is this extension of linkages, when personal suffering becomes redefined in social and political terms, that is of particular interest in medical anthropology.
Culture brokering serves as a useful heuristic to link the levels of health experience shown in Figure 1. Culture brokering is defined as the act of bridging, linking, or mediating between groups or persons of differing cultural systems for the purpose of reducing conflict or producing change. The culture broker serves as a bridge between the patient and others she encounters during the course of making sense of an illness.
The concept of culture brokering has a long history in anthropology, beginning with the work of Wolf (1956) and Geertz (1960) and continuing into the 1970s and early 1980s with the Health Ecology Project in Miami, Florida (Weidman 1975, 1982). Jezewski’s culture brokering model (Jezewski et al. 1993; Jezewski 1995; Jezewski and Finnell 1998) consists of a three-stage process whereby problems in the health-care encounter are identified and strategies are implemented to resolve the problems. The third stage results in a resolution of the problem or a return to previous stages to attempt again to resolve the problem.
The intervening conditions in the culture brokering model consider micro- and macrosocial variables that influence the personal experience of illness. Culture brokering can serve as the bridge between the patient’s personal experience of illness and the broader environmental, community, political, and economic constraints that affect the way patients seek and receive care within the biomedical health-care system.
History of Studies of Illness Experience
No single discipline can claim intellectual ownership of the phenomenology of illness. Sociology, anthropology, nursing, and psychiatry are among the major fields that focus on experience as an alternative to the depersonalized focus on disease characteristic of biomedicine. Kaplan (1964: viii) writes: ‘… too often psychiatry has not listened carefully enough to its patients, choosing instead to take seriously only what it could observe and verify … [but] the reality of the person, psychologically speaking, lies in his action and his experiencing.’
Unifying these disciplines is use of subjective, personal accounts in place of the objective case studies. The ‘privileged position’ of these texts reveals that patients identify with their illnesses. ‘Although they suffer …, there is also gratification, excitement, and meaning’ (Kaplan 1964: viii, x).
First-person accounts by patients are a rich resource for understanding the process of becoming ill and then recovering. In addition to analysis of personal accounts, the ethnographic method of participant-observation has revealed the ‘inner world’ of mental illness. Estroff’s Making it Crazy, a study of ‘persons grappling with psychiatric disorder’ as well as of their care providers (Estroff 1981: 3), is an outstanding example. Reynolds and Farberow’s The Family Shadow (1981) describes the day-by-day pressures experienced by a young, suicidal man as he attempts to adjust to his home environment after being released from a psychiatric hospital.
Studies at the Individual Level
Viewing ‘illness as residing “within the individual” and connected with that person,’ medical sociologists have focused on the identity of the sick person (Herzlich and Pierret 1987: 118).
Through historic and clinical studies of how individual patients seek understanding of the cause and the meaning of their condition, contextual analysis can illuminate notions of the self and the body. For example, the novelist Kafka saw his tuberculosis as reflecting his good self and his bad self ‘doing battle with one another’ (quoted in Herzlich and Pierret 1987: 118). Some patients see their condition as ‘illness spawned by the self,’ implying that illness represents failure (p. 124). Other patients feel less alienated from their illnesses; one noted ‘my subconscious calls the illness and takes refuge in it’ (p. 122). Despite his discomfort, the patient may enjoy being cared for and being free of responsibility. A French patient writes about a childhood illness: ‘I remember the deep pleasure of snuggling in my bed, knowing that … I would not have to make any effort or bear responsibility for anything’ (Herzlich and Pierret 1987: 124).
Others experience progressive illness not as refuge, but as a series of challenges. Anthropologist Robert Murphy’s struggle to continue working and writing, to ‘make an extra effort to establish status as an autonomous, worthy individual’ as a tumor gradually causes paralysis is vividly documented in The Body Silent (Murphy 1987, 1995: 146). Illness accounts of the progression of multiple sclerosis provide a sense of disease trajectory for others coping with similar or earlier stages of the disease (Monks and Frankenberg 1995).
Explanatory and Cognitive Models
Beliefs and perceptions held by patients and their families constitute an important reality, not only for ethnographers, but also for practitioners. Good and Good (1980: 166) advocate a meaning-centered approach to clinical practice that ‘recognizes all illness realities to be fundamentally semantic,’ that is based on explanatory models and illness narratives. Kleinman’s concept (1980, 1986, 1988) of explanatory models (EMs) has stimulated a large body of research on individual and microcultural constructions of health and illness. Being informed about the popular health-care sector (that is, lay persons’ beliefs and models) and listening to the patient’s narrative ‘is central to the work of doctoring’ (Kleinman 1988: 96) as well as obviously central to the anthropological task. Kleinman’s negotiation model, which includes eliciting patient and provider EMs of illness, is also useful for healthcare providers and applied researchers.
The explanatory model framework is directed primarily at patient-provider interaction in health-care settings. The utility of this model stems, in part, from the ease with which it can be used in a clinical setting. In a relatively short time, health-care providers can elicit patients’ perspectives of their illness in their own words. Patients’ perspectives provide the health-care provider with a means to compare the provider’s EM with patients’ personal explanation of their illness. A comparison of similarities and disparities in patient and provider explanations can result in better understanding, and particularly more effective negotiation of disparities. Negotiation of differences between patient and provider explanatory models of illness affords the opportunity for a treatment plan that is mutually agreeable, relevant, and most importantly one that considers the personal experience of the patient in the stabilization of illness or the healing process.
Blumhagen’s (1980) study of ‘hypertension’ among African Americans is a classic example of the importance of patients’ explanatory models in directing treatment plans for a particular population. Twenty years later, eliciting explanatory models of illness remains an important tool for both researchers and clinicians. For example, Heurtin-Roberts and Reisin (1992) look at the cultural influence of lay models of hypertension on compliance with treatment. Handelman and Yeo (1996) use explanatory models to understand chronic symptoms in Cambodian refugees. Likewise, Gray (1995) uses Kleinman’s explanatory model perspective to examine parents’ beliefs about autism in their children.
Kleinman’s negotiation model, including the clinical technique of eliciting explanatory models, is not without its critics. Young (1982) has called for greater emphasis on social relations within a framework of critical analysis. Good (1994) takes a more temperate approach, accepting the concept of EMs but suggesting that interpretive research should be informed by a critical stance. Kleinman (1995) himself discusses increasing discomfort with the concept of medical systems. He has shifted from focus on explanatory models to narratives, in part because of his professional shift from clinical practice to academia and his intellectual movement from symbolic anthropology to phenomenology and from symbolic forms and social structures to subjectivity and intersubjectivity. Nevertheless, eliciting explanatory models serves as a useful heuristic for health-care professionals attempting to understand the personal experiences of their patients, and the negotiation model directs providers toward a more collaborative relationship with patients.
Cognitive models held by biomedical practitioners and by patients who seek their services may create barriers that impede patients’ movement toward wellness, and it is in such multicultural settings that culture brokering is most effective. McElroy and Jezewski’s (1986) study of a pediatric clinic illustrates problems of communication when patients and providers are of differing ethnic backgrounds. Those problems traverse language and demonstrate the barriers to understanding in clinical encounters. The barriers are due not only to terminology, but also to differing premises, backgrounds, and roles.
The values and assumptions of physicians and other care providers have been understudied, although Hahn and Gaines’ Physicians of Western Medicine (1985) is a useful beginning; see especially Hahn’s portrait (1985a) of an internist’s world view. Hahn (1985b) has also analyzed fifteen first-person accounts by doctors of their own illnesses, surgery, and trauma, describing the often transformative effect of discovering the ‘world of patienthood’ (p. 94). A more recent effort to address cognitive patterns of physicians as well as of patients is Hunt and Mattingly’s (1998) collection on varieties of reasoning in clinical encounters. Hunt’s account (1998) of the heavy use of moral reasoning by Mexican physicians in explaining cancer is especially illuminating.
Studies at the Microcultural Level
The concept that illness and wellness is best studied at the level of the individual reflects a particularly Western bias about the autonomy of the individual (Lock and Scheper-Hughes 1996). This atomistic approach may not be valid in some cultural systems. Not all societies hold a concept of personhood, and many merge individual and social identities. The egocentric experience of bodily changes and interpretation of their meaning (e.g., as signs of personal failure or weakness) has little parallel in societies that interpret affliction through sociocentric terms.
Medical sociologists and anthropologists have long sought meaning and purpose in illness interactions, recognizing that beyond the clinical domain of individual care lies the psychosocial, microcultural realm of relationships transformed by illness. The individual level and the microcultural level interconnect and mutually influence sickness behavior, as suggested by Parsons’ concept (1948, 1951) oí sick role. This role includes behaviors the sick person adopts in response to the expectations of others, especially the expectations of care providers. In Parsons’ model, sickness is viewed as deviance or dysfunctional behavior, yet paradoxically the patient is not usually held to be morally responsible for the illness and is excused from normal role expectations as long as he seeks care and attempts to regain health. Ethnographic studies by Fox (1959) of hospitalized patients with degenerative illnesses have refined the sick role concept, showing that patients without hope of cure nevertheless felt responsibility to function as competently as possible.
Like many seminal concepts, Parson’s sick role idea has received its share of criticism. The major objection is that it does not account for intracultural variation by gender, age, and class, nor for interethnic variation. Zborowski’s study (1952) of ethnic differences in expression of pain illustrates considerable variability in sick-role behavior. In addition, some stigmatized illnesses, such as AIDS and lung cancer, do evoke concepts of moral responsibility.
That illness and disability lead to interactions profoundly marked by stigma (Goffman 1963), that is spoiled or discredited identity, which in turn lead to a ‘moral career’ in which negative or deviant self-identity is pivotal, has been influenced by the symbolic interactionism theory of the self (Cooley 1964). Ethnographic studies of stigma (e.g., Edgerton’s 1967 study of mentally retarded people) have demonstrated the power of negative public stereotypes to discredit people and create barriers to their well-being. Nevertheless, the stigma concept, like sick role and explanatory models, has been subject to considerable revisionism. Critics point out that many individuals and families can be more resilient than stigma theory suggests, developing coping strategies and positive identities in spite of (or because of) negative public reactions. Becker’s (1980) ethnography of elderly deaf people shows that although stigma clearly deprived and disturbed deaf people during their childhoods, by the time they reached middle age and beyond they had developed many positive strategies, including a strong peer support system within a deaf community.
Community and Family Studies
Clinicians and epidemiologists often use Western (allopathic or biomedical) diagnostic systems as the gold standard when studying illness behavior and comparing disease rates. However, these systems may be regarded as a product of culture itself (Kleinman et al. 1978). Indigenous illness categories (emic categories) not recognized in Western diagnostic systems are frequently discovered in medical anthropology research. In fact, some researchers consider all illness categories to be emic, that is, culturally specific, while disease categories are thought to be etic or universal. The argument between empiricists (who claim that disease can be observed and is therefore real in an etic sense) and the social construction of health theorists (that even diseases are cultural, emic categories) remains a serious controversy (Browner et al. 1988).
Studies of folk illnesses can easily combine ethnographic and clinical methodology, merging emic and etic analyses (cf. Foulks 1972; Rubel et al. 1984). One of the earliest and most influential medical ethnographies of illness behavior and experience was Clark’s Health in the Mexican-American Culture (1970), which explored Chicano health and illness in California. Early studies of illness in Navajo culture by Leighton and Leighton (1944) is another pioneering work.
One difficulty with early medical ethnographies was the tendency to describe cultural systems homogeneously. As a corrective, Harwood (1981) emphasized the diversity of ethnomedical beliefs and practices within a population related to educational level, class, and degree of assimilation into mainstream culture. Janzen’s study (1978) of therapeutic options in Lower Zaire also corrects some of the weaknesses of earlier studies that tended to describe ethnomedical systems as homogeneous.
Medical anthropologists and nurse-anthropologists have found that the individual’s illness experience cannot be separated fully from the experience of other family members, especially caregivers. Social units—families, peers, and communities—carry the cultural meanings of the illness and control many resources to deal with it. Nursing has contributed significantly to phenomenological research in studies of family support systems. Morse and Johnson view illness ‘as an experience that affects the sick person and his or her significant others’ (1991: 317, emphasis in original). Their illness-constellation model focuses on the meaning of illness as the individual and significant others move through four stages of managing illness. This diachronic, dynamic model reminds us that illness varies in meaning over time, and the identities of the sick change depending on the particular stage or point in the illness trajectory.
Anthropological studies of life transitions have shown considerable variation in definitions of life-cycle events such as menopause. Despite North American medical views emphasizing loss, decline, atrophy, and increased health risk, menopause is experienced as normal in many societies. It fits the domain of health, not illness. Lock’s research (1993) shows that hot flashes, headaches, difficulty in concentrating, or depression typical among menopausal European and North American women are not universal. The key physical marker of menopause for Americans, the cessation of menses, carries different meaning and significance for Japanese women. Conversely, North Americans rarely link typical symptoms of menopause among Japanese women (shoulder pain, for example) with menopause.
Cultural variation in the experience of menopause indicates the need for a phenomenology of the healthy body. Steps toward this approach have been taken in the genre of ‘embodiment’ studies (Csordas 1994) which go beyond individual consciousness of illness or culturally reinforced meanings of illness events. Reaching toward an understanding of the body not as a natural, biological entity, but as the existential ground of culture and self (Csordas 1994: 4) focuses on how the self performs and is displayed, how the body and mind experience acts of violence and torture, and how metaphors and symbols evoke and/or give meaning to physical sensations. Studies of the body have been, for the most part, in the genre of critical and feminist studies (for example, Emily Martin’s The Woman in the Body (1987)), although some rather inaccessible publications (e.g., Scott’s 1978 cross-ethnic study of concepts of menstruation and well-being) represent more applied studies.
Studies at the Macrocultural Level
Research on health and illness at the macrocultural level encompasses a range of theoretical approaches including political economy, political ecology of health (Baer 1996), and critical analysis (Singer 1995). Research focusing on environmental change and policy (Follér and Hansson 1996) and disease history (Farmer 1992) contextualize health problems as part of large global and regional systems rather than as isolated, individualized issues. Kunitz’s (1994) account of impacts of colonialism on the epidemiology and demography of New World populations is a particularly excellent example of macrocultural analysis.
An earlier study by Levy and Kunitz (1974) illustrates how macrocultural, microcultural, and individual analysis can be integrated. This project, focusing on alcohol use by Navajos, Hopis, and White Mountain Apaches, uses a wide range of research techniques: historical analysis, epidemiology, survey research, study of clinical records, and personal interviews. Based on these data, the authors questioned stereotyped assumptions held by non-Indian care providers, administrators, and educators. For example, the assumption that alcohol use led to violence was not supported; suicide and homicide rates did not vary with alcohol-use patterns. Levy and Kunitz (1974: 193) found that the majority of Navajos who drank excessively did so for normal, cultural reasons rather than pathological ones such as addiction. The ‘disease model’ of alcohol use was not prevalent in Native American communities at the time of this study, and it is probable that even today treatment programs for indigenous communities function better with other therapeutic models, for example, spiritual healing and restoration of community harmony.
Macrocultural studies of health have recently been subject to considerable controversy as medical anthropologists struggle to develop theory and appropriate methodologies. The debate between advocates of the political economy of health approach and medical ecologists has been particularly divisive (McElroy 1996). While neither approach has a particularly strong claim to study of experience, each gives differing priority to economic, political, and ecological frameworks. One compromise is the political ecology of health (Baer 1996). The two case studies that follow illustrate political ecology approaches.
Implementing the Model: Two Case Studies
This section discusses two populations in relation to macrocultural and microcultural variables that affect the individual’s experience of health and illness. The cases demonstrate variability in the way that the larger societal infrastructure affects the lived experience of health and illness in complex societies.
There is a wide variation in the estimation of the number of migrant farmworkers in the United States, from one to five million (Slesinger 1992). In 1991, agriculture surpassed mining as the most hazardous occupation in the United States. In addition to farm accidents from using heavy machinery, health hazards include herbicides and pesticides, and repeated exposure to the sun. Noise-related hearing loss, pulmonary diseases, musculoskeletal problems, skin diseases, and stress-related illnesses affect migrant farmworkers and their families in disproportionate numbers compared with the rest of the US population (National Coalition for Agricultural Safety and Health 1989). Chronic health conditions such as diabetes and hypertension are higher in the migrant population than in the rest of the US population. In one study, migrant farmworker clinic visits for diabetes were 338 per cent higher than the national average (Dever 1991). Rates of diabetes in Mexican Americans are 110-120 per cent higher than in non-Hispanic whites (Harris 1991).
The average yearly income for a migrant farmworker family of four is estimated as being between 6000 and 8000 per year, well below the national poverty level (Slesinger 1992). Migrants often live in crowded conditions with poor sanitation, including lack of clean running water, which puts them at risk of infectious and parasitic illnesses.
The work ethic among migrant farmworkers is strong, as is the importance of family. One study characterized the work ethic as pragmatic survivalism; migrants work in the fields regardless of illness because ‘no work means no pay’ and perhaps no food for themselves and their families (O’Brien 1982). O’Brien states that only when a farmworker is too sick to work in the fields will she seek health care, especially when health services hours conflict with work hours.
An example from Jezewski’s (1989) study illustrates how migrant farmworkers wait to seek care until illness prevents them from working. A Mexican farmworker sustained a gash on his lower leg but did not seek care for 2 weeks. Only when the injury became infected and he was having trouble bearing weight on his leg did he come to the clinic. He was afraid that the clinic staff would notify the grower that he should not be working because of the injury and infection. Negotiating treatment was an important aspect of the clinical encounter with this patient. Under ideal circumstances, the staff would recommend he remain out of work with his leg elevated for 7-10 days. This was not acceptable or feasible for the farmworker. After talking with the physician and receiving an antibiotic, the man agreed to keep off his leg and elevate it when he was not working. The lifestyle of the migrant farmworker was an important consideration in understanding the personal experience of this man’s illness.
Access and use of health services is a major problem for migrant farmworkers. Despite the passage of the Migrant Health Act (Public Health Service Act, Sec. 310) in 1962, which authorized funds to establish health centers to deliver primary health service to migrant farmworkers and their families, recent estimates suggest that these centers serve less than 20 per cent of the targeted population (Dever 1991). Lack of health insurance, including Medicaid, is a major barrier to access and use of health services (Slesinger and Ofstead 1993). Other barriers to health care include clinic hours during times when migrants must work, lack of transportation to health services, and language and cultural barriers, as well as the stigma of the label ‘migrant farmworker’ within the communities where they work (Jezewski 1990).
Barriers to health care often emanate from language and cultural differences between patients and providers of care. Staff in a migrant farmworker primary care clinic (Jezewski 1989) related the story of a young Haitian woman whose newborn needed to remain in the hospital for several days after birth. When the baby was ready to leave the hospital, the mother came to the hospital with only a clean towel to wrap the baby. Hospital staff would not release the baby to the mother’s care because she did not bring baby clothes. The staff perceived that she was not a ‘good’ mother and that the baby was in danger of being neglected when, in fact, Haitian mothers do not routinely dress their newborn babies but wrap them loosely in light blankets or toweling. Clinic personnel intervened on behalf of this mother, who did not speak English, thus preventing further misunderstanding and a charge of child neglect (this illustrates the culture brokering role). The mother was behaving according to her Haitian cultural tradition and the hospital staff was evaluating the mother’s behavior based on their cultural beliefs about child care. Language barriers further confounded the interaction.
Political and economic issues work against migrant farmworkers’ health as well as their ability to access and use health services. Continuity of health care, a sense of community involvement, employment, and family life are disrupted on a regular basis. Because they are essentially an uncounted population and seldom recognized as a separate entity in health services research, legislation enacted to facilitate care for the general population and special populations like the urban poor seldom aid the migrant population. Migrant farmworkers are truly one of the invisible populations in the United States, an ethnically diverse population who are among the most vulnerable and powerless populations in the United States.
Modernizing Inuit in Northern Canada
Once a nomadic, foraging people, about 15 000 Canadian Inuit live today in small settlements in the Northwest Territories. Many are wage-employed, and they live in modern houses with electricity, television, phones, and plumbing. They drive cars, motorcycles, snowmobiles, and all-terrain vehicles. Children attend local and regional schools. Government health care has been available since the 1950s, when polio, tuberculosis, measles, and other infectious diseases reached epidemic levels. Despite this care, health statistics were not favorable. In 1965 the infant mortality rate was 124 per 1000 in Iqaluit, on Baffin Island. In 1976 the tuberculosis rate was 137.8 per 100000 (the all-Canada rate was 13 per 100000; Muir 1991). The high incidence of death and injury due to alcohol has led some communities to pass liquor-control ordinances. The majority of adults and many teenagers smoke, and lung cancer has become a leading cause of death.
Traditionally, Inuit were foragers of marine and terrestrial animals. In the last few decades, consumption of native foods has diminished. Dog teams are rarely used for hunting, and gasoline for snowmobiles or for boat motors is expensive. Those who can afford gasoline are often too busy to hunt daily, confining subsistence activities to weekends and summer holidays. In addition, the market for seal skins has declined due to European and US boycotts and trade restrictions (Wenzel 1991). With the collapse of the export trade, the economies of northern settlements have suffered.
Decline in meat consumption is a great loss for Inuit. Land foods, the foci of food-sharing networks, collaborative hunting teams, rituals celebrating first kills by children, and community feasts are viewed by many Inuit as health-giving. Seal meat offers important nutrients: three to seven times as much iron as beef, twice as much protein, five times as much calcium, and twenty times as much vitamin A (Mackey 1988; Wenzel 1991: 121). However, Inuit preferences are not based on pragmatic grounds, but rather on a strong identification with seals and other mammals. ‘Seal blood gives us our blood. Seal is life-giving’ (Borré 1991: 54). Seal meat is thought to cause a person’s blood to become fortified and to flow faster, giving warmth and strength. One respondent explained: ‘when the body is warm with seal blood, the soul is also protected from illness … [and] when [people] are deprived of seal or other country foods, they become physically, then mentally sick’ (Borré 1991: 54). Further, seal meat nourishes the soul. In order to maintain health, the body and soul must be unified through proper social actions, including hunting rituals, certain food preparation methods, and sharing of food. If the soul-body linkage becomes weak, illness may follow (Borré 1991: 53).
The shortage of land food has real physical and emotional consequences, as do proposed policies to impose quotas on hunting of beluga whales and other marine mammals. PCBs (poly-chlorinated biphenyls) from industrial waste have been found in the tissues of seals, walruses, caribou, and narwhals. About one-fifth of the people of Broughton Island, on Baffin Island, had higher than acceptable daily intakes of PCBs. Among children, 63 per cent had PCB blood levels above acceptable contaminant levels (Kinloch and Kuhnlein 1988).
Inuit have been denied control of their land and resources, but this may change in 1999, when the Nunavut territory, encompassing one-fifth of the landmass of Canada, is established. Compensation of Can $580 million will be paid to Inuit over 15 years, and the territorial government will be largely run by native people. ‘Nuna’ means more than territory. It signifies the ecosystem in which Inuktitut culture is rooted and in which health is experienced as a set of relationships with a harsh environment, with the life-giving animals of the habitat, and with spiritual elements existing in every entity and action.
Discussion of the Cases
The macrocultures in which they live and work puts both the migrant farmworkers and the Inuit at risk of poor health. They have little power to control their environment. Except for central California and the Midwest, migrant farmworker laborers are not organized and have little political influence. Their housing is temporary, usually substandard and crowded. Sanitation is a problem both in the fields and in their living quarters. They are disenfranchised from the larger population, essentially unseen by the communities in which they work or the metropolitan areas for whom they provide the produce found in supermarkets. Poor housing and working conditions, along with a poverty subsistence level, cause increased stress, physical and emotional, in migrant workers and their families. Ethnic identity is strong in the Mexican migrant farmworkers, but the sense of community is fractured because of long intervals away from their extended families and community home bases.
The Inuit case represents the political ecology of health of a population transformed through cultural contact and economic development. The twenty-first century may be an opportunity to come full circle, as Inuit attempt to restore the connectedness of their work, of their social relations, and of their place in the natural order. Restoration of the ecosystem means restoration of health. The experience of illness for Inuit, whether malnutrition, infection, or addiction, has become embedded in politics and a changed ecology. This is not simply an etic model imposed on emic explanatory models. Inuit explanatory models themselves link food, politics, economics, and well being. A political ecology of health model is especially salient among young, activist adults who look to Nunavut to address some of the most serious health challenges they face.
Variations in the Experience and Definition of Illness
This section deals with social interactions in the experience of illness in various ethnic populations. We view social systems as transmitters of information about the meanings and significance of health, sickness, and care. Following Rubel and Garro’s concept (1992) of ‘health culture,’ ‘sick people use their health culture to interpret their symptoms, give them meaning, assign them severity, organize them into a named syndrome, decide with whom to consult, and for how long to remain in treatment’ (Rubel and Garro 1992: 627).
Most illnesses are managed and resolved in the household without recourse to professional care. Symptoms are discussed and interpreted by family members, particularly those who typically provide lay diagnoses and home remedies. Decisions are made whether to seek professional care and from whom. Of course, if professional care is sought, family involvement does not end. Compliance with prescriptions and prohibitions depends in part on family comprehension and support of therapeutic regimens, and should the condition not be resolved, leading to disability or to chronic or terminal illness, management again usually becomes localized in the domestic sphere. Consequently, understanding variations in household management is essential.
Breast cancer, the second leading cause of cancer mortality in US women, is a disease in which stigma creates barriers to early detection. Black women in North America are usually diagnosed at a later stage than white women and have twice the risk of dying from breast cancer (Wardlow and Curry 1996). Black women studied in Atlanta, Georgia, in a cancer screening project mostly viewed cancer as invariably fatal. They considered mammograms to be messengers of terminal illness, or worse, believing that mammography itself could damage the breast through pressure and bruising. They also believed that any activity, including sexual activity or abuse, causing bumps or bruises could lead to potentially malignant ‘knots’ in the breast (Wardlow and Curry 1996: 322-23).
Despite fears of mammography, interviewees felt strong responsibility for their health. Seventy per cent did get regular mammograms and practised frequent, sometimes daily, breast self-examinations. They also shared information (both accurate and erroneous) about breast cancer risks with older and younger women in the family, functioning as teachers and even as managers, helping female kin to keep track of medical appointments (including annual mammograms), medication refills, and self-examination routines (Wardlow and Curry 1996: p. 333). In this case, although the connotations of cancer are negative, mother-daughter support systems and information sharing help reduce stigma and facilitate responsible care seeking.
Undoubtedly social support affects decision making about illness management. In a study of drug-using HIV-positive women in the Bronx, New York, Pivnick (1994) found that pregnancy decisions were associated with personal histories, particularly experiences of loss. Most of the women were Latina or African-American; all were poor, and two-thirds were addicts. Many of them believed they had been abandoned by their own mothers, described as cold and unsupportive. Being diagnosed with HIV is just another chapter in a history of deprivation, abandonment, economic hardship, and addiction. Many saw themselves as victims, believing that HIV is a form of germ warfare to eliminate people of color, drug users, homosexuals, and other ‘undesirables’ (Pivnick 1994: 49). Of 115 women who had previously borne children, 63 per cent had lost or surrendered custody of at least one child. This fact was strongly correlated with the decision not to undergo abortion despite the risk of vertical transmission of HIV to the fetus. Women who had lived with at least one child continuously were more likely to agree to abortion. Some of these women saw their pregnancies as a chance to redeem themselves, to make one positive contribution, and to have a loving relationship with one child before they became terminally ill. Children were perceived as ‘saviors, as rescuers, providing a constructive focus in a woman’s life’ (p. 51).
Culture-bound syndromes (CBSs), also called folk illnesses, represent disorders that communicate distress to arenas beyond the household. The symptomatology of a CBS often embodies various levels of meaning about the person’s status (or change in status), about troubled relationships with family members and the wider community, and about the disorientating effects of biochemical disorder. Appropriately called ‘idioms of distress’ in anthropological literature (Nichter 1981), folk illnesses offer insight into cultural dynamics.
Among Latinos, including Puerto Ricans and Dominicans, the syndrome ataques de nervios (attacks of nerves) has been interpreted as a ‘culturally meaningful way to express powerful emotions’ such as anger or deep sadness (Guarnaccia et al. 1989: 47). To understand the meaning of ataques de nervios, Guarnaccia emphasizes that it is important to focus on the themes and structure of the narratives of patients, who usually describe stressful life experiences, family crises, the disruption of migration, losses, and abandonment. The symptoms refer not only to family tensions, but also to larger contexts, especially for political refugees and migrants who have left family members behind in difficult and possibly dangerous situations (Guarnaccia et al. 1989: 60).
While anthropological analysis of nerves focuses on social tensions, the individual’s experience of emotional distress is actual symptoms; a process called somatization (Kleinman and Kleinman 1985). This concept has been widely used in analyses of the meaning of illness behavior, including neurasthenia in Chinese culture (Kleinman 1980), comparisons of’nerves’ in various cultures (Davis and Guarnaccia 1989; Low 1985), and of culture-bound syndromes in general (Simons and Hughes 1985).
Variations in Pain Perception and Experience
Culture mediates pain and disability as well as illness, and perception of pain intensity varies depending on how one has learned to interpret pain. Tolerance thresholds may vary by cognitive as well as by neurological factors.
‘The world of the chronic pain sufferer is a lonely one,’ writes Bates (1996: xv), whose study of ethnic groups in New England and Puerto Rico focused on variation in pain perception and management in patients, most with low back pain due to degenerated and herniated disks. The loneliness comes because others find it difficult to comprehend the draining nature of intractable pain. When medication or surgery do not bring lasting relief, family members may question the authenticity of the pain. Frustration about inability to return to normal roles often leads to depression. The psychosocial issues are as important as the medical ones.
The patient’s degree of ethnicity, or ‘heritage consistency,’ is associated with differences in reported pain intensity. In most ethnic groups (except Anglo-Americans), patients with high heritage consistency reported lower intensities of back pain. Another factor is ‘locus of control,’ a measure of whether one feels internal responsibility for health problems or feels that control is external and not a question of personal responsibility. In all ethnic-groups studies, except Anglo-Americans and Polish, those with internal locus of control also reported lower pain intensity.
Bates found major differences between ethnic groups in communication styles. Latinos and Italians, who rated their pain as highest in intensity, tended to be highly expressive about discomfort. Polish, Irish, and Anglo-Americans, who reported lower intensities, were relatively restrained in expressing pain. A woman of Polish background in her 70s stressed the importance of hiding her pain from others. With high pain intensity, she described herself, nevertheless, as ‘generally healthy with a slight disability’ (Bates 1996: 73). Many of her friends were not aware of her medical problems.
The characteristic responses of Latino patients differed. Latino men in pain were very expressive, ‘wincing, grimacing, and groaning more often than most of the non-Latino patients’ (Bates 1996: 50). One patient, unable to work even after back surgery, defined himself as unhealthy and disabled, unable to carry out the normal male provider role for his family. He said that the pain controlled his life. A Latina woman with degenerative joint disease of the spine also moaned and cried frequently. Her complaints made her unpopular with the pain center’s staff, who preferred patients to be stoic and as cheerful as possible. Whether pain is regarded as physical pathology rather than psychosomatic (that is, as ‘real’ rather than ‘just in the head’) is an issue that chronic-pain patients must face in communicating with staff as well as with family members, friends, and employers.
The realness or legitimacy of chronic illness is particularly important in poorly understood conditions such as chronic fatigue syndrome (Ware 1992). Interviews of 50 chronic fatigue sufferers in the United States showed that others often defined the problem as not real, as being ‘in the head,’ called delegitimation by Ware. Symptoms such as exhaustion, depression, muscle pain, and poor concentration are trivialized and dismissed by others as being problems of everyday life. Some patients are not taken seriously because they do not look sick enough. Because physicians cannot find definitive signs of disease, the problem is defined as psychosomatic. One respondent said, ‘They [doctors] would say things like, “You can’t be experiencing what you are experiencing. You need to see a psychologist. You aren’t as sick as you think you are’” (Ware 1992: 351).
Loss of a sense of realness, of legitimacy, also affects individuals disabled by spinal cord injury, traumatic brain injury, or stroke. The body’s physical limitations after stroke, for example, and the extreme dependence on others during rehabilitation, are experienced as an assault on the self (Kaufmann 1988: 342). One patient said: ‘You can’t imagine how frustrating it is when you are dependent on all these people for your every move.’ (p. 343). The sense of being constrained by the body, and the inability of the self to master the body, is experienced as failure. Feelings of dependence, and frustration with a medical system that is supposed to cure but cannot in cases of stroke, are particularly salient when patients live in a culture that values autonomy and trusts medical competence.
In rare cases stroke brings on almost total paralysis of the body. It is instructive to consider what happens to the sense of self when the body is incapable of movement and when communication is limited to eyeblinks. Such was the condition of Jean-Dominique Bauby, who relied on blinking to dictate The Diving Bell and the Butterfly (1997) while hospitalized for ‘locked-in syndrome.’ Attempting to maintain his relationship with his children through hospital visits and outings by wheelchair to the beach, Bauby feels he is ‘something of a zombie father (p. 69). Grief surges over me…my son Théophile sits patiently waiting—and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe body tight against me’ (p. 71). He decides to dictate the book, describing how fantasy and dreams help maintain his sense of self, to prove that he has not become a vegetable’ and that his mind is intact. Yet in his relations with others, and in his own memories of the past, Bauby senses that he is fading away. ‘I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory’ (p. 77).
Patients with terminal cancer also experience a sensation of ‘fading away,’ a transition that involves redefining the self in respect to the reality of illness, weakness, and impending death. As family members note physical decline in the patient, they begin to realize that he or she will probably not recover. In a study of palliative care in western Canada, interviewees described the transition ‘as starting to disappear’ or ‘feeling eroded’ (Davies et al. 1995: 4). One woman said, ‘The physical me is no longer here as I was … it seems that I’m trapped in this sort of helpless little carcass. But my mind and my soul, I think, are the same’ (p. 9). Here the redefinition of self involves accepting the physical limitations of the disease while emphasizing that the mind, and hence the self, remains intact.
Part of redefinition comes from searching for the meaning of the illness. Patients reflect on their lives, their values and priorities, and the beauty of nature as they look for the spiritual meaning of the illness. Spouses often focus on their relationship, and despite the pain of the situation may perceive the last months or weeks together as ‘a beautiful time in our lives’ (p. 45).
Family dynamics, either negative or positive, are crucial elements in the experience of illness. Lyles (1993) describes an argument with her father that occurs after her mother’s mastectomy. Infuriated with her father’s seemingly callous attitude toward her mother’s needs, Lyles breaks her years-long role of keeping peace in this African-American family. ‘My mother is going, and with her the standard of conduct that has kept a vise on my lips. If she is going to die, I need not try to act quiet, tame, and ladylike any more … I am miserable at my mother’s dying, but fiercely content and the realization that with that terrible event, my deepest self has begun to be born’ (Lyles 1993: 280). Growth of the self is often part of the experience of losing a parent.
When the cancer patient is a child, family dynamics become even more crucial as layers of deception or denial filter communication about treatment and the long-term prognosis. An ethnographic study of children with leukemia and their families showed the centrality of ‘mutual pretense’ in communication about the child’s state of health (Bluebond-Langner 1978). The pretense in this case involves communication that suggests that the child is not dying, despite all evidence to the contrary. In fact, even young children become aware of the changes in their health status, learning from other children on the ward and by observing subtle cues in their parents and in hospital staff. A 5-year-old boy, for example, notes: ‘See my mommy’s red nose, that’s from me. Everybody cries when they see me. I’m pretty sick’ (Bluebond-Langner 1978: 8), but this child will not necessarily discuss his leukemia directly with the mother. By not disclosing that he knows how sick he is, he maintains some degree of normalcy in the relationship.
Parents in turn may not discuss the illness because they wish to protect the child from knowledge of the prognosis or awareness of the impending ‘irrevocable separation’ (p. 216). In addition, hospital staff practice mutual pretense with children. Bluebond-Langner found that staff were uncomfortable around the parents who practiced ‘open awareness’ and disclosure with their children, believing that such parents increased the child’s difficulties.
While it is clear that the fear of loss and separation creates difficulties in communication in families when one member is critically or terminally ill, illness also creates a binding inter-dependency that is both enriching and stifling. Murphy, writing of his progressive paralysis, observes that his wife is ‘tied down by me, her actions are severely limited by me, and my needs are never absent from her mind … we are both held in thrall by my condition—we are each other’s captives’ (Murphy 1987: 199). He notes that this degree of dependence is associated with debased status in American society, where autonomy is expected of adults and dependence is considered childish (p. 201).
Marshall (1992) presents a thoughtful discussion pertaining to the real and potential contributions of anthropology to bioethics. She emphasizes the importance of a hermeneutic interpretive approach to understanding the personal experience of bioethics. Importantly, ethics and values cannot be separated from social, cultural, and historical determinants that regulate both the definition and resolution of moral quandaries. ‘Of critical importance is the inherent complexity of individual and cultural values concerning the nature of illness, the management of medical care and the use of medical technology’ (1992: 62).
Within health-care delivery there exists the conundrum of cultural sensitivity/competence and clinical standards and professional ethics. Clinicians and social scientists alike wrestle clinically and academically with medical issues that are strongly influenced by cultural values and beliefs as well as by professional ethics of biomedicine. The resolution of these dichotomies has no easy solution. What is needed is a broad spectrum of methods and investigators to study the personal experiences of health and illness.
Increasingly, social scientists are providing important insight into the discipline of bioethics. Kleinman, in Writing at the Margins (1995), critiques bioethical approaches that ignore the social and cultural components in ethical discourse and those who do not address the personal experience in ethical decision making. Examples of anthropologists studying bioethical issues from an ethnographic perspective include Lock and Honda’s (1990) study of the meaning of death in Japanese society in relation to the concept of brain death and the medical harvesting of organs for transplantation. In a society with a modern medical system, technological advances and the centuries old Japanese moral and cultural meaning of death often clash.
The illness narratives of the dying process of elderly parents, as experienced by their middle-aged daughters, illustrate the personal experiences of ethical decision making and the powerful influence of medicine in controlling the dying experience for both patients and families (Rubinstein 1995). Rubinstein’s study describes the importance of considering the values of society and the insidiousness of stigmatization (ageism), the irreducible subjectivity of illness for families, and the complex ethical dilemmas surrounding end-of-life decisions.
Legislative decisions impose widespread mandates on ethical decision making. Sometimes these political decisions have serious consequences on the personal experience of illness. Carrese and Rhodes’ (1995) interdisciplinary, focused ethnography of bioethics on a Native American reservation presents one such dilemma. The Patient Self Determination Act (PSDA), enacted by Congress in 1991, mandates that any health-care facility receiving Medicare or Medicaid reimbursement must inform its patients about advance directives and the patient’s right to self determine end-of-life decisions based on individual state laws. The Indian Health Service is under the mandate to comply with the provisions of the PSDA. The results of Carrese and Rhodes’ study demonstrate that biomedicine’s principles of autonomy and patients’ rights of self determination sometime conflict with the Navajo belief that language shapes reality. Negative information (discussion of death, poor prognosis, and end of life decisions) conflicts with the Navajo concept of hozho and is viewed by Navajo as potentially harmful. The researchers concluded that because 86 per cent of their Navajo informants considered advance care planning a dangerous violation of Navajo values, policies complying with the Patient Self Determination Act are ethically troublesome and warrant reevaluation. This study not only illustrates the incongruence between cultural beliefs and government policy, but also the applied potential of the study for changing policy.
Jezewski (1993) explored the complexity of end-of-life decisions based on the narratives of nurses. The study focuses on nurses’ experiences with patients and families, as those patients and families made decisions about do-not-resuscitate (DNR) status for the patient. The findings describe the complexity of end-of-life decisions, and the importance of considering the personal experiences of patients, families, and staff in the decision-making process of consenting to a DNR status. Jezewski’s study also explores the conflict that arises when the personal experiences of patients, families, and staff differ. Interpersonal conflict (conflict between patients, families, and/or staff) centered on differences in personal experiences and cultural values. In one narrative, a nurse described in detail an experience with a young woman, a Jehovah’s witness, who was seriously ill and needed a blood transfusion. The woman refused to consent to a blood transfusion because of her religious beliefs. The physician tried to coerce the woman into the transfusion or a DNR status because he did not want to be responsible if the woman died or coded because she refused the transfusion. The interaction between the physician and the patient created a crisis situation for both. The woman felt intimidated with the decisions she was being asked to make; one option which was against her religious beliefs, and the other, which in her perception, indicated that the medical team was giving up on her care. The woman was treated without a transfusion and was eventually discharged from the hospital, but the personal struggle for the patient and the family added stress to their illness experience.
Interdisciplinary Research on Perceptions of the Environment
Multiple perspectives allow us to look productively at health phenomena at the macrocultural level. Study of ecology and health especially warrants the input of several disciplines (Follér and Hansson 1996). Medical ecology, medical geography, and epidemiology are inherently multidisciplinary, integrating clinical, statistical, and social science concepts. Nevertheless, these approaches often rely on quantitative methods, and research in the ecology of health needs to emphasize qualitative, experiential understanding of the meanings of risk and pollution.
Clinical findings in studies of Love Canal and other ‘contaminated communities’ (Edelstein 1988) have been ambiguous. There is some effect of toxic exposure on children’s growth patterns (Paigen et al. 1987). Self-reported incidence of a wide range of health problems is greater in the areas with the greatest exposure to landfill chemicals (Levine 1982). Missing from these studies is assessment of the psychosocial impacts of living in communities labeled as contaminated. Fitchen’s ethnographic research (1989) on the symbolism of the home, and how the meaning of home changes for those whose groundwater becomes contaminated, represents the approach we are advocating.
Edelstein’s work (1988) also offers a model. Edelstein notes that toxic exposure affects people’s lifescape, that is, ‘their shared social and personal paradigms used for understanding the world’ (Edelstein 1988: 11). In the communities of Love Canal (evacuated after discovery that homes and schools were built on chemical waste dumps) and Legler (with drinking water contaminated by nearby waste dumps), people found their lifescapes transformed as the level of toxicity in their neighborhoods became clear. Trust in the environment, in other people, and especially in the government diminished, and a sense of personal control was lost. Health seemed far less attainable over the long run, and people felt vulnerable. Past health problems, miscarriages, and deaths were reinterpreted in reference to new information and the new perception of the environment as disease-causing (p. 51). Children became especially sensitized to fear of contact with water, to awareness of the strain on their parents, and to generalized anxiety. Edelstein’s study demonstrates a methodology that should serve medical anthropology well into the next century.
Multiple Methods Approach to Studying the Personal Experience of Illness
The traditional survey and broad-based ethnographic studies of the social sciences are evolving into more sophisticated methods of data collection and analysis. Triangulation in social science research is becoming the norm. Denzin (1978) describes four different types of triangulation in research—methodological, data, investigator, and theoretical. Triangulation refers to the use of several means of verifying, confirming, and enriching the findings of a study. Triangulation in research involves using multiple investigators, more than one means of data collection, and/or multiple methodologies or theories within one study. Janesick (1994) adds a fifth type of triangulation—interdisciplinary triangulation, in which investigators from multiple disciplines conduct studies together to give a richer context to the findings. Multidisciplinary research is becoming more prevalent, as are increased numbers of articles in the social science literature on methodology.
Social scientists are increasingly advocating multiple methods to study the personal experience of illness/wellness. Emphasis on a broader, more holistic decision model for the study of illness beliefs and behaviors dictates a change in the way help seeking is investigated. Pelto and Pelto (1997) suggest a methodology that falls between traditional study of cultural belief systems and the quantitative survey that emphasizes knowledge, attitude, and practices. They call for a more comprehensive investigation, including intracultural variation and the effect of macrosocial variables, such as economic influences and political structure, on decisions regarding the seeking of treatment. The research protocol known as focused ethnographic studies (FES) was developed by the Acute Respiratory Infection (ARI) Programme of the World Health Organization (WHO 1993). Pelto and Pelto state, ‘the research approach is designed to explore the systematic patterns of cultural knowledge concerning specific illness categories in relation to actual behaviors involving those illnesses and accompanying symptoms to obtain operationally important information and insights on specific health problems’ (1997: 155).
The FES method is focused on collection of emic data (explanatory models) as well as collecting data on actual episodes of illness so that cultural statements of participants can be compared to their actual behaviors as the illness unfolds. Questions asked of informants are loosely based on Kleinman’s concept of eliciting explanatory models. The study by Gittelsohn, et al. (1991) of ARI in Gambia, and that of Hudelson et al. (1995) of ARI in Bolivia are examples of the application of the WHO/ARI focused ethnographic study protocol. FES is particularly useful for researchers in the Third World as well as in industrialized health-care systems, and may be integrated with the rapid assessment procedures developed by Scrimshaw and Hurtado (1987) for brief ethnographic surveys of primary health-care services.
In general, focused ethnography promises to be an effective tool for social and health-related studies of particular illnesses. As an applied method with a broad ecological framework, it is an important method because of its emphasis on the personal experience of illness, the decision-making context, and the macrosocial variables that affect personal decisions surrounding illness. Studies of migrant farmworker communities in the northeast United States, with particular focus on health-care-seeking behavior, illustrate this approach (Jezewski 1990).
Data collection in social science, particularly studies that explore the personal experiences of health and illness, is becoming more sophisticated as well. Certainly in-depth interviewing and participant observation have been, and will continue to be, the focal point of data collection in anthropology and other social sciences, but more recently, social scientists are turning to other qualitatively oriented methods of collecting data. Focus groups have long been used in the business/marketing world and more recently in academia. Many useful resources (Greenbaum 1997; Krueger 1994; Morgan 1997a, 1997b;) are available to help researchers become familiar and adept at group interviewing. Coreil (1995) provides an extensive historical account of the use of focus group interviews in research as well as discussion of the strengths and weaknesses of conducting group interviews in social science research. Coreil prefers the term group interviews, and she outlines four different types of group interviews, with focus groups as one type. Coreil’s distinction between different types of group interviews is most helpful to the social scientist by providing the scope of possibilities for those who are new to the concept of group interviews as a method of data collection.
The use of multiple research methods within any one study minimizes the danger of focusing only on either the microcultural or macrocultural levels of illness. Studies of personal experiences conducted by social scientists and others outside the traditions of anthropology and ethnography need to acknowledge the concept of culture and to make the influence of culture explicit in their data collection and analysis.
In Medicine, Rationality and Experience, Byron Good (1994) discusses and critiques what he labels the four orienting approaches in medical anthropology: empiricist, cognitive, meaning centered/interpretive, and critical. He states that although each approach has strengths and weaknesses, disease and human suffering cannot be comprehended from a single perspective. These approaches should not be viewed as a dialectic to be resolved through synthesis, but rather as multiple lenses to study core issues facing medical anthropology. Good’s ideas can be taken a step further. Not only should social scientists embrace multiple theoretical approaches, but of necessity they must also embrace the multiple research methodologies that are best suited to the theoretical approaches guiding issues crucial to understanding human experience.
Perhaps because it fits poorly into quantitative research, phenomenology has as yet gained few supporters in medicine or in biocultural anthropology. Many researchers and clinicians are ambivalent about the value of the personal narrative as the primary source of data. It is difficult to compare narratives or to generalize from their subjective content. The sample of narratives often seems small, precluding easy cross-cultural or cross-national comparisons.
A second reason that phenomenology meets resistance in the clinical sciences is that it involves an ‘experience-near’ methodology. The clinician must listen empathetically to the patient, a labor-intensive and potentially emotionally draining interaction for most practitioners, especially since the information conveyed is thought to be tangential to the ‘real’ problem. We are reminded of the example described by Lock and Scheper-Hughes (1996: 46) of a case presented to medical students by a woman suffering from headaches. She described domestic abuse by an alcoholic husband, the burden of caring for her senile mother-in-law, and her worries about her difficult son. Sympathetic but impatient, a student interrupted, ‘“But what is the real cause of the headaches?”’ When rich interpersonal details are considered extraneous, we know that a narrow biomedical model dominates.
Health and illness are broad, multifaceted domains, but we are not training our students to appreciate the complexity of these domains. The person’s feelings of strength or weakness, joy or depression, energy or exhaustion are usually omitted from case studies. Self-awareness of changes in puberty, pregnancy, menopause, progressive illness, and aging (and self-assessment of what physical signs are normal or abnormal or threatening to one’s physical and emotional integrity) are too rarely probed in clinical or ethnographic interviews. For a profession that claims to know much about the spectrum of human existence, medical anthropology still knows too little about the experience of wellness and illness, of birth and death, of grief and comfort, of terror and ecstasy.
In this chapter we have taken the position that the study of illness and wellness experiences is of value in its own right. Our argument is not that study of individual experience should replace objective study, but rather that the two approaches can be complementary. We have also advocated an integrative, multivariate model that links the individual, the community, and larger political and economic forces. This model will be of use not only to anthropologists, but also to clinicians, public health researchers, and medical ecologists.