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Handbook of Social Studiesin Health and Medicine

Cultural Variation in theExperience of Health and Illness

Contributors: Gary L. Albrecht & Ray Fitzpatrick & Susan C. ScrimshawPrint Pub. Date: 2000Online Pub. Date: June 22, 2009Print ISBN: 9780761942726Online ISBN: 9781848608412DOI: 10.4135/9781848608412Print pages: 191-210

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Illness

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Chapter 13: Cultural Variation in theExperience of Health and Illness

Introduction

Prevention of suffering underlies most therapeutic systems, but paradoxically, asDostoevsky reflects, ‘man will never renounce real suffering … [which] is the soleorigin of consciousness’ (1955: 140). Awareness of distress, in oneself or others, is auniversal human trait, and the fundamental dichotomy of wellness versus illness mayhave deep evolutionary roots. Fábrega (1997: 46) argues that responses to afflictionemerged in protocultural primate groups and were retained through natural selectionin human evolution, leading to a sickness-healing adaptation that underlies all medicalsystems.

Although the capacity to respond to distress is biogenetic, criteria of abnormality, andthe signs and symptoms that denote suffering, vary culturally (Csordas and Kleinman1996). We define culture as a system of learned and shared codes or standards forperceiving, interpreting, and interacting with others and with the environment (Jezewski1990). As a normative framework for decision making and behavioral strategies, cultureis 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 thebody and the self. Criteria of health usually include instrumental components suchas the ability to work and to fulfill expected roles. For many people, environmentalparameters – the ability to procure nourishing food and other resources and to livewithout undue hardship – also define health. Spiritual components of health are centralin many cultures.

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Recognizing a wide spectrum of illness and wellness definitions, and the fact thatprofessional criteria differ from lay concepts, anthropologists find it helpful to distinguishthree categories: disease (deviations from a biomedical norm), illness (the livedexperience of culturally constructed categories), and sickness (patients' roles). Whiledisease is a central focus of biomedical practitioners, factors affecting illness andsickness, and the transformative power of illness and disability, are more pivotalconcerns of social scientists.

The phenomenology of illness, focusing on the person's experience, offers a valuablealternative to studies of disease. Phenomenological refers to ‘perspectives that areconcerned with the natives’ point of view, with meaning, subjectivity, and consciousness– perspectives that account for “the phenomenon” under investigation as irreducibleand autonomous in its own right' (Kaufmann 1988: 340). In addition to elicitingthe individual's experience of health or illness, phenomenology accounts for thetransformations of consciousness and self-identity that can occur in illness, disability, ortrauma.

The illness experience is inextricably intertwined with the self and others acrosstime. The responses of others are as important in the illness experience as is theinterpretation 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 isill affects community’ (Estroff 1993: 258). Despite the emphasis in this chapter onindividual experience of health and illness in [p. 192 ↓ ] different cultures, the roleof culture cannot be explained solely by studies of the self, and our level of analysiscannot be solely individual. Contextual factors are important in accounting for variationin illness experience. Class, gender, ethnicity, educational level, age, and social supportespecially influence risk of illness, access to care, and the probability of resolving ahealth problem (Harwood 1981). Environment, economic constraints, and politicalstructures also influence health and illness (Bair and Cayleff 1993; McElroy andTownsend 1996).

This chapter focuses primarily on the personal experience of health and illness, but alsolinks the individual level of analysis to broader community and cultural levels. We focuson multiple behavioral environments and the multiple networks that individuals formin preventing or dealing with health problems, as well as on economic and ecological



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factors that influence the well-being of whole communities. Methods and modelstraditionally used to explore personal experiences of health and illness will also bereviewed, 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 themacrocultural (cultural and transcultural systems) (cf. Figure 1).

Figure 1 Analytic domains in the experience of health and illness

[p. 193 ↓ ] The triangle representing illness experience cuts across three levelsto denote that people individually and collectively respond to health problemsthrough multiple systems. The boundaries are permeable. Communicating through‘idioms of distress,’ culturally distinctive ways of symbolizing and imaging illness andinjury, symptoms become ‘grounded in the social and cultural realities of individual



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patients’ (Good and Good 1980: 166–69). As people in the microcultural domain (familymembers, the community, health professionals) become aware of an individual'sdistress 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 isinterpreted as related to lack of power, inadequate resources, or discriminatory policies.It is this extension of linkages, when personal suffering becomes redefined in social andpolitical terms, that is of particular interest in medical anthropology.

Culture brokering serves as a useful heuristic to link the levels of health experienceshown in Figure 1. Culture brokering is defined as the act of bridging, linking, ormediating between groups or persons of differing cultural systems for the purpose ofreducing conflict or producing change. The culture broker serves as a bridge betweenthe 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 thework of Wolf (1956) and Geertz (1960) and continuing into the 1970s and early 1980swith the Health Ecology Project in Miami, Florida (Weidman 1975, 1982). Jezewski'sculture brokering model (Jezewski et al. 1993; Jezewski 1995; Jezewski and Finnell1998) consists of a three-stage process whereby problems in the health-care encounterare identified and strategies are implemented to resolve the problems (Figure 2). Thethird stage results in a resolution [p. 194 ↓ ] of the problem or a return to previousstages to attempt again to resolve the problem.

Figure 2 Jezewski's culture brokering theory





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The intervening conditions in the culture brokering model consider micro- andmacrosocial variables that influence the personal experience of illness. Culturebrokering can serve as the bridge between the patient's personal experience of illnessand the broader environmental, community, political, and economic constraints thataffect 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 focuson experience as an alternative to the depersonalized focus on disease characteristic ofbiomedicine. Kaplan (1964: viii) writes: ‘… too often psychiatry has not listened carefullyenough to its patients, choosing instead to take seriously only what it could observe andverify … [but] the reality of the person, psychologically speaking, lies in his action andhis experiencing.’

Unifying these disciplines is use of subjective, personal accounts in place of theobjective case studies. The ‘privileged position’ of these texts reveals that patients



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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 processof becoming ill and then recovering. In addition to analysis of personal accounts, theethnographic method of participant-observation has revealed the ‘inner world’ of mentalillness. 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. Reynoldsand Farberow's The Family Shadow (1981) describes the day-by-day pressuresexperienced by a young, suicidal man as he attempts to adjust to his home environmentafter 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 andPierret 1987: 118).

Through historic and clinical studies of how individual patients seek understandingof the cause and the meaning of their condition, contextual analysis can illuminatenotions of the self and the body. For example, the novelist Kafka saw his tuberculosisas reflecting his good self and his bad self ‘doing battle with one another’ (quoted inHerzlich and Pierret 1987: 118). Some patients see their condition as ‘illness spawnedby the self,’ implying that illness represents failure (p. 124). Other patients feel lessalienated from their illnesses; one noted ‘my subconscious calls the illness and takesrefuge in it’ (p. 122). Despite his discomfort, the patient may enjoy being cared forand being free of responsibility. A French patient writes about a childhood illness: ‘Iremember the deep pleasure of snuggling in my bed, knowing that … I would not haveto 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 ‘makean extra effort to establish status as an autonomous, worthy individual’ as a tumorgradually causes paralysis is vividly documented in The Body Silent (Murphy 1987,



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1995: 146). Illness accounts of the progression of multiple sclerosis provide a sense ofdisease trajectory for others coping with similar or earlier stages of the disease (Monksand Frankenberg 1995).

Explanatory and Cognitive Models

Beliefs and perceptions held by patients and their families constitute an importantreality, not only for ethnographers, but also for practitioners. Good and Good (1980:166) advocate a meaning-centered approach to clinical practice that ‘recognizes allillness realities to be fundamentally semantic,’ that is based on explanatory models andillness narratives. Kleinman's concept (1980, 1986, 1988) of explanatory models (EMs)has stimulated a large body of research on individual and microcultural constructionsof 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 centralto the work of doctoring’ (Kleinman 1988: 96) as well as obviously central to theanthropological task. Kleinman's negotiation model, which includes eliciting patient andprovider EMs of illness, is also useful for healthcare providers and applied researchers.

The explanatory model framework is directed primarily at patient-provider interaction inhealth-care settings. The utility of this model stems, in part, from the ease with whichit can [p. 195 ↓ ] be used in a clinical setting. In a relatively short time, health-careproviders 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'sEM with patients' personal explanation of their illness. A comparison of similarities anddisparities in patient and provider explanations can result in better understanding, andparticularly more effective negotiation of disparities. Negotiation of differences betweenpatient and provider explanatory models of illness affords the opportunity for a treatmentplan that is mutually agreeable, relevant, and most importantly one that considers thepersonal experience of the patient in the stabilization of illness or the healing process.

Blumhagen's (1980) study of ‘hypertension’ among African Americans is a classicexample of the importance of patients' explanatory models in directing treatment plansfor a particular population. Twenty years later, eliciting explanatory models of illnessremains an important tool for both researchers and clinicians. For example, Heurtin-



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Roberts and Reisin (1992) look at the cultural influence of lay models of hypertensionon compliance with treatment. Handelman and Yeo (1996) use explanatory modelsto understand chronic symptoms in Cambodian refugees. Likewise, Gray (1995) usesKleinman's explanatory model perspective to examine parents' beliefs about autism intheir children.

Kleinman's negotiation model, including the clinical technique of eliciting explanatorymodels, is not without its critics. Young (1982) has called for greater emphasis onsocial relations within a framework of critical analysis. Good (1994) takes a moretemperate approach, accepting the concept of EMs but suggesting that interpretiveresearch should be informed by a critical stance. Kleinman (1995) himself discussesincreasing discomfort with the concept of medical systems. He has shifted from focuson explanatory models to narratives, in part because of his professional shift fromclinical practice to academia and his intellectual movement from symbolic anthropologyto phenomenology and from symbolic forms and social structures to subjectivity andintersubjectivity. Nevertheless, eliciting explanatory models serves as a useful heuristicfor health-care professionals attempting to understand the personal experiences oftheir patients, and the negotiation model directs providers toward a more collaborativerelationship with patients.

Cognitive models held by biomedical practitioners and by patients who seek theirservices may create barriers that impede patients' movement toward wellness, and itis in such multicultural settings that culture brokering is most effective. McElroy andJezewski's (1986) study of a pediatric clinic illustrates problems of communication whenpatients and providers are of differing ethnic backgrounds. Those problems traverselanguage and demonstrate the barriers to understanding in clinical encounters. Thebarriers 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 beenunderstudied, although Hahn and Gaines' Physicians of Western Medicine (1985) isa 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 ownillnesses, surgery, and trauma, describing the often transformative effect of discoveringthe ‘world of patienthood’ (p. 94). A more recent effort to address cognitive patterns of



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physicians as well as of patients is Hunt and Mattingly's (1998) collection on varietiesof reasoning in clinical encounters. Hunt's account (1998) of the heavy use of moralreasoning 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 individualreflects a particularly Western bias about the autonomy of the individual (Lock andScheper-Hughes 1996). This atomistic approach may not be valid in some culturalsystems. Not all societies hold a concept of personhood, and many merge individualand social identities. The egocentric experience of bodily changes and interpretationof their meaning (e.g., as signs of personal failure or weakness) has little parallel insocieties that interpret affliction through sociocentric terms.

Medical sociologists and anthropologists have long sought meaning and purposein illness interactions, recognizing that beyond the clinical domain of individual carelies the psychosocial, microcultural realm of relationships transformed by illness. Theindividual level and the microcultural level interconnect and mutually influence sicknessbehavior, as suggested by Parsons' concept (1948, 1951) oí sick role. This role includesbehaviors the sick person adopts in response to the expectations of others, especiallythe expectations of care providers. In Parsons' model, sickness is viewed as devianceor dysfunctional behavior, yet paradoxically the patient is not usually held to be morallyresponsible for the illness and is excused from normal role expectations as long ashe seeks care and [p. 196 ↓ ] attempts to regain health. Ethnographic studies by Fox(1959) of hospitalized patients with degenerative illnesses have refined the sick roleconcept, showing that patients without hope of cure nevertheless felt responsibility tofunction 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 inexpression of pain illustrates considerable variability in sick-role behavior. In addition,some stigmatized illnesses, such as AIDS and lung cancer, do evoke concepts of moralresponsibility.



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That illness and disability lead to interactions profoundly marked by stigma (Goffman1963), that is spoiled or discredited identity, which in turn lead to a ‘moral career’ inwhich negative or deviant self-identity is pivotal, has been influenced by the symbolicinteractionism theory of the self (Cooley 1964). Ethnographic studies of stigma (e.g.,Edgerton's 1967 study of mentally retarded people) have demonstrated the power ofnegative public stereotypes to discredit people and create barriers to their well-being.Nevertheless, the stigma concept, like sick role and explanatory models, has beensubject to considerable revisionism. Critics point out that many individuals and familiescan be more resilient than stigma theory suggests, developing coping strategies andpositive identities in spite of (or because of) negative public reactions. Becker's (1980)ethnography of elderly deaf people shows that although stigma clearly deprived anddisturbed deaf people during their childhoods, by the time they reached middle age andbeyond they had developed many positive strategies, including a strong peer supportsystem within a deaf community.

Community and Family Studies

Clinicians and epidemiologists often use Western (allopathic or biomedical) diagnosticsystems as the gold standard when studying illness behavior and comparing diseaserates. However, these systems may be regarded as a product of culture itself (Kleinmanet al. 1978). Indigenous illness categories (emic categories) not recognized in Westerndiagnostic 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 betweenempiricists (who claim that disease can be observed and is therefore real in an eticsense) 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 earliestand most influential medical ethnographies of illness behavior and experience wasClark's Health in the Mexican-American Culture (1970), which explored Chicano healthand illness in California. Early studies of illness in Navajo culture by Leighton andLeighton (1944) is another pioneering work.



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One difficulty with early medical ethnographies was the tendency to describe culturalsystems homogeneously. As a corrective, Harwood (1981) emphasized the diversityof ethnomedical beliefs and practices within a population related to educational level,class, and degree of assimilation into mainstream culture. Janzen's study (1978) oftherapeutic options in Lower Zaire also corrects some of the weaknesses of earlierstudies that tended to describe ethnomedical systems as homogeneous.

Medical anthropologists and nurse-anthropologists have found that the individual'sillness experience cannot be separated fully from the experience of other familymembers, 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 familysupport systems. Morse and Johnson view illness ‘as an experience that affects the sickperson 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 significantothers move through four stages of managing illness. This diachronic, dynamic modelreminds us that illness varies in meaning over time, and the identities of the sick changedepending on the particular stage or point in the illness trajectory.

Anthropological studies of life transitions have shown considerable variation indefinitions of life-cycle events such as menopause. Despite North American medicalviews emphasizing loss, decline, atrophy, and increased health risk, menopauseis 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 arenot universal. The key physical marker of menopause for Americans, the cessation ofmenses, carries different meaning and significance for Japanese women. Conversely,North Americans [p. 197 ↓ ] rarely link typical symptoms of menopause amongJapanese women (shoulder pain, for example) with menopause.

Cultural variation in the experience of menopause indicates the need for aphenomenology of the healthy body. Steps toward this approach have been takenin the genre of ‘embodiment’ studies (Csordas 1994) which go beyond individualconsciousness of illness or culturally reinforced meanings of illness events. Reachingtoward an understanding of the body not as a natural, biological entity, but as the



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existential ground of culture and self (Csordas 1994: 4) focuses on how the selfperforms and is displayed, how the body and mind experience acts of violence andtorture, and how metaphors and symbols evoke and/or give meaning to physicalsensations. Studies of the body have been, for the most part, in the genre of critical andfeminist studies (for example, Emily Martin's The Woman in the Body (1987)), althoughsome rather inaccessible publications (e.g., Scott's 1978 cross-ethnic study of conceptsof 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 oftheoretical approaches including political economy, political ecology of health (Baer1996), and critical analysis (Singer 1995). Research focusing on environmentalchange and policy (Follér and Hansson 1996) and disease history (Farmer 1992)contextualize health problems as part of large global and regional systems rather thanas isolated, individualized issues. Kunitz's (1994) account of impacts of colonialism onthe epidemiology and demography of New World populations is a particularly excellentexample 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 useby Navajos, Hopis, and White Mountain Apaches, uses a wide range of researchtechniques: historical analysis, epidemiology, survey research, study of clinical records,and personal interviews. Based on these data, the authors questioned stereotypedassumptions held by non-Indian care providers, administrators, and educators. Forexample, the assumption that alcohol use led to violence was not supported; suicideand 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, culturalreasons rather than pathological ones such as addiction. The ‘disease model’ of alcoholuse was not prevalent in Native American communities at the time of this study, and itis probable that even today treatment programs for indigenous communities functionbetter with other therapeutic models, for example, spiritual healing and restoration ofcommunity harmony.



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Macrocultural studies of health have recently been subject to considerable controversyas medical anthropologists struggle to develop theory and appropriate methodologies.The debate between advocates of the political economy of health approach and medicalecologists has been particularly divisive (McElroy 1996). While neither approach has aparticularly 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 microculturalvariables that affect the individual's experience of health and illness. The casesdemonstrate variability in the way that the larger societal infrastructure affects the livedexperience of health and illness in complex societies.

Migrant Farmworkers

There is a wide variation in the estimation of the number of migrant farmworkersin the United States, from one to five million (Slesinger 1992). In 1991, agriculturesurpassed mining as the most hazardous occupation in the United States. In additionto farm accidents from using heavy machinery, health hazards include herbicides andpesticides, and repeated exposure to the sun. Noise-related hearing loss, pulmonarydiseases, musculoskeletal problems, skin diseases, and stress-related illnesses affectmigrant farmworkers and their families in disproportionate numbers compared with therest of the US population (National Coalition for Agricultural Safety and Health 1989).Chronic health conditions such as diabetes and hypertension are higher in the migrantpopulation than in the rest of the US population. In one study, migrant farmworker clinicvisits for diabetes were 338 per cent higher than the national average [p. 198 ↓ ] (Dever1991). Rates of diabetes in Mexican Americans are 110–120 per cent higher than innon-Hispanic whites (Harris 1991).

The average yearly income for a migrant farmworker family of four is estimated as beingbetween $6000 and $8000 per year, well below the national poverty level (Slesinger



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1992). Migrants often live in crowded conditions with poor sanitation, including lack ofclean 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 inthe fields regardless of illness because ‘no work means no pay’ and perhaps no foodfor themselves and their families (O'Brien 1982). O'Brien states that only when afarmworker is too sick to work in the fields will she seek health care, especially whenhealth services hours conflict with work hours.

An example from Jezewski's (1989) study illustrates how migrant farmworkers wait toseek care until illness prevents them from working. A Mexican farmworker sustained agash on his lower leg but did not seek care for 2 weeks. Only when the injury becameinfected and he was having trouble bearing weight on his leg did he come to theclinic. He was afraid that the clinic staff would notify the grower that he should not beworking because of the injury and infection. Negotiating treatment was an importantaspect of the clinical encounter with this patient. Under ideal circumstances, the staffwould recommend he remain out of work with his leg elevated for 7–10 days. Thiswas not acceptable or feasible for the farmworker. After talking with the physician andreceiving an antibiotic, the man agreed to keep off his leg and elevate it when he wasnot working. The lifestyle of the migrant farmworker was an important consideration inunderstanding the personal experience of this man's illness.

Access and use of health services is a major problem for migrant farmworkers. Despitethe 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 tomigrant farmworkers and their families, recent estimates suggest that these centersserve less than 20 per cent of the targeted population (Dever 1991). Lack of healthinsurance, 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 duringtimes when migrants must work, lack of transportation to health services, and languageand cultural barriers, as well as the stigma of the label ‘migrant farmworker’ within thecommunities where they work (Jezewski 1990).



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Barriers to health care often emanate from language and cultural differences betweenpatients and providers of care. Staff in a migrant farmworker primary care clinic(Jezewski 1989) related the story of a young Haitian woman whose newborn neededto remain in the hospital for several days after birth. When the baby was ready toleave the hospital, the mother came to the hospital with only a clean towel to wrapthe baby. Hospital staff would not release the baby to the mother's care because shedid not bring baby clothes. The staff perceived that she was not a ‘good’ mother andthat the baby was in danger of being neglected when, in fact, Haitian mothers do notroutinely 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, thuspreventing further misunderstanding and a charge of child neglect (this illustrates theculture brokering role). The mother was behaving according to her Haitian culturaltradition and the hospital staff was evaluating the mother's behavior based on theircultural beliefs about child care. Language barriers further confounded the interaction.

Political and economic issues work against migrant farmworkers' health as well astheir ability to access and use health services. Continuity of health care, a sense ofcommunity involvement, employment, and family life are disrupted on a regular basis.Because they are essentially an uncounted population and seldom recognized as aseparate entity in health services research, legislation enacted to facilitate care forthe general population and special populations like the urban poor seldom aid themigrant population. Migrant farmworkers are truly one of the invisible populations in theUnited States, an ethnically diverse population who are among the most vulnerable andpowerless populations in the United States.

Modernizing Inuit in Northern Canada

Once a nomadic, foraging people, about 15 000 Canadian Inuit live today in smallsettlements in the Northwest Territories. Many are wage-employed, and they live inmodern houses with electricity, television, phones, and plumbing. They drive cars,motorcycles, snowmobiles, and all-terrain vehicles. Children attend local and regionalschools. Government health care has been available since the 1950s, when polio,tuberculosis, measles, and other infectious diseases reached epidemic levels. Despitethis care, health statistics were not favorable. In 1965 the [p. 199 ↓ ] infant mortality rate



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was 124 per 1000 in Iqaluit, on Baffin Island. In 1976 the tuberculosis rate was 137.8per 100000 (the all-Canada rate was 13 per 100000; Muir 1991). The high incidenceof death and injury due to alcohol has led some communities to pass liquor-controlordinances. The majority of adults and many teenagers smoke, and lung cancer hasbecome a leading cause of death.

Traditionally, Inuit were foragers of marine and terrestrial animals. In the last fewdecades, consumption of native foods has diminished. Dog teams are rarely used forhunting, and gasoline for snowmobiles or for boat motors is expensive. Those whocan afford gasoline are often too busy to hunt daily, confining subsistence activities toweekends and summer holidays. In addition, the market for seal skins has declined dueto European and US boycotts and trade restrictions (Wenzel 1991). With the collapse ofthe 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 offersimportant 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; Wenzel1991: 121). However, Inuit preferences are not based on pragmatic grounds, but ratheron 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 bloodto become fortified and to flow faster, giving warmth and strength. One respondentexplained: ‘when the body is warm with seal blood, the soul is also protected fromillness … [and] when [people] are deprived of seal or other country foods, they becomephysically, 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 socialactions, 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 doproposed policies to impose quotas on hunting of beluga whales and other marinemammals. PCBs (poly-chlorinated biphenyls) from industrial waste have been found inthe tissues of seals, walruses, caribou, and narwhals. About one-fifth of the people ofBroughton Island, on Baffin Island, had higher than acceptable daily intakes of PCBs.



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Among children, 63 per cent had PCB blood levels above acceptable contaminantlevels (Kinloch and Kuhnlein 1988).

Inuit have been denied control of their land and resources, but this may change in1999, 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 morethan territory. It signifies the ecosystem in which Inuktitut culture is rooted and in whichhealth 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 andaction.

Discussion of the Cases

The macrocultures in which they live and work puts both the migrant farmworkersand 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 notorganized and have little political influence. Their housing is temporary, usuallysubstandard and crowded. Sanitation is a problem both in the fields and in their livingquarters. They are disenfranchised from the larger population, essentially unseen bythe communities in which they work or the metropolitan areas for whom they providethe produce found in supermarkets. Poor housing and working conditions, along with apoverty subsistence level, cause increased stress, physical and emotional, in migrantworkers 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 theirextended families and community home bases.

The Inuit case represents the political ecology of health of a population transformedthrough cultural contact and economic development. The twenty-first century may bean opportunity to come full circle, as Inuit attempt to restore the connectedness of theirwork, of their social relations, and of their place in the natural order. Restoration of theecosystem means restoration of health. The experience of illness for Inuit, whethermalnutrition, infection, or addiction, has become embedded in politics and a changedecology. This is not simply an etic model imposed on emic explanatory models. Inuit



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explanatory models themselves link food, politics, economics, and well being. A politicalecology of health model is especially salient among young, activist adults who look toNunavut to [p. 200 ↓ ] address some of the most serious health challenges they face.

Variations in the Experience and Definitionof Illness

This section deals with social interactions in the experience of illness in variousethnic populations. We view social systems as transmitters of information about themeanings and significance of health, sickness, and care. Following Rubel and Garro'sconcept (1992) of ‘health culture,’ ‘sick people use their health culture to interpret theirsymptoms, give them meaning, assign them severity, organize them into a namedsyndrome, decide with whom to consult, and for how long to remain in treatment’ (Rubeland Garro 1992: 627).

Most illnesses are managed and resolved in the household without recourse toprofessional care. Symptoms are discussed and interpreted by family members,particularly those who typically provide lay diagnoses and home remedies. Decisionsare made whether to seek professional care and from whom. Of course, if professionalcare is sought, family involvement does not end. Compliance with prescriptions andprohibitions depends in part on family comprehension and support of therapeuticregimens, and should the condition not be resolved, leading to disability or to chronic orterminal illness, management again usually becomes localized in the domestic sphere.Consequently, understanding variations in household management is essential.

Family Influences

Breast cancer, the second leading cause of cancer mortality in US women, is a diseasein which stigma creates barriers to early detection. Black women in North Americaare usually diagnosed at a later stage than white women and have twice the risk ofdying 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



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considered mammograms to be messengers of terminal illness, or worse, believing thatmammography itself could damage the breast through pressure and bruising. They alsobelieved that any activity, including sexual activity or abuse, causing bumps or bruisescould 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, sometimesdaily, breast self-examinations. They also shared information (both accurate anderroneous) 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 ofmedical appointments (including annual mammograms), medication refills, and self-examination routines (Wardlow and Curry 1996: p. 333). In this case, although theconnotations of cancer are negative, mother-daughter support systems and informationsharing help reduce stigma and facilitate responsible care seeking.

Undoubtedly social support affects decision making about illness management. Ina study of drug-using HIV-positive women in the Bronx, New York, Pivnick (1994)found that pregnancy decisions were associated with personal histories, particularlyexperiences 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 theirown mothers, described as cold and unsupportive. Being diagnosed with HIV is justanother chapter in a history of deprivation, abandonment, economic hardship, andaddiction. Many saw themselves as victims, believing that HIV is a form of germ warfareto eliminate people of color, drug users, homosexuals, and other ‘undesirables’ (Pivnick1994: 49). Of 115 women who had previously borne children, 63 per cent had lost orsurrendered custody of at least one child. This fact was strongly correlated with thedecision not to undergo abortion despite the risk of vertical transmission of HIV to thefetus. Women who had lived with at least one child continuously were more likely toagree to abortion. Some of these women saw their pregnancies as a chance to redeemthemselves, to make one positive contribution, and to have a loving relationship withone child before they became terminally ill. Children were perceived as ‘saviors, asrescuers, providing a constructive focus in a woman's life’ (p. 51).



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Community Influences

Culture-bound syndromes (CBSs), also called folk illnesses, represent disorders thatcommunicate distress to arenas beyond the household. The symptomatology of aCBS often embodies various levels of meaning about the person's status (or changein status), about troubled relationships with family members and the wider community,and about the disorientating effects of biochemical disorder. Appropriately called ‘idiomsof distress’ in anthropological literature [p. 201 ↓ ] (Nichter 1981), folk illnesses offerinsight into cultural dynamics.

Among Latinos, including Puerto Ricans and Dominicans, the syndrome ataques denervios (attacks of nerves) has been interpreted as a ‘culturally meaningful way toexpress powerful emotions’ such as anger or deep sadness (Guarnaccia et al. 1989:47). To understand the meaning of ataques de nervios, Guarnaccia emphasizes thatit is important to focus on the themes and structure of the narratives of patients, whousually describe stressful life experiences, family crises, the disruption of migration,losses, and abandonment. The symptoms refer not only to family tensions, but alsoto larger contexts, especially for political refugees and migrants who have left familymembers behind in difficult and possibly dangerous situations (Guarnaccia et al. 1989:60).

While anthropological analysis of nerves focuses on social tensions, the individual'sexperience of emotional distress is actual symptoms; a process called somatization(Kleinman and Kleinman 1985). This concept has been widely used in analyses of themeaning of illness behavior, including neurasthenia in Chinese culture (Kleinman 1980),comparisons of'nerves' in various cultures (Davis and Guarnaccia 1989; Low 1985), andof culture-bound syndromes in general (Simons and Hughes 1985).



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Variations in Pain Perception andExperience

Culture mediates pain and disability as well as illness, and perception of pain intensityvaries depending on how one has learned to interpret pain. Tolerance thresholds mayvary 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 variationin pain perception and management in patients, most with low back pain due todegenerated and herniated disks. The loneliness comes because others find it difficultto comprehend the draining nature of intractable pain. When medication or surgerydo 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. Thepsychosocial issues are as important as the medical ones.

The patient's degree of ethnicity, or ‘heritage consistency,’ is associated with differencesin reported pain intensity. In most ethnic groups (except Anglo-Americans), patientswith high heritage consistency reported lower intensities of back pain. Another factoris ‘locus of control,’ a measure of whether one feels internal responsibility for healthproblems or feels that control is external and not a question of personal responsibility. Inall ethnic-groups studies, except Anglo-Americans and Polish, those with internal locusof control also reported lower pain intensity.

Bates found major differences between ethnic groups in communication styles. Latinosand Italians, who rated their pain as highest in intensity, tended to be highly expressiveabout discomfort. Polish, Irish, and Anglo-Americans, who reported lower intensities,were relatively restrained in expressing pain. A woman of Polish background in her70s stressed the importance of hiding her pain from others. With high pain intensity,she described herself, nevertheless, as ‘generally healthy with a slight disability’ (Bates1996: 73). Many of her friends were not aware of her medical problems.



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The characteristic responses of Latino patients differed. Latino men in pain were veryexpressive, ‘wincing, grimacing, and groaning more often than most of the non-Latinopatients’ (Bates 1996: 50). One patient, unable to work even after back surgery, definedhimself as unhealthy and disabled, unable to carry out the normal male provider role forhis family. He said that the pain controlled his life. A Latina woman with degenerativejoint disease of the spine also moaned and cried frequently. Her complaints made herunpopular with the pain center's staff, who preferred patients to be stoic and as cheerfulas 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 patientsmust face in communicating with staff as well as with family members, friends, andemployers.

Chronic Illness

The realness or legitimacy of chronic illness is particularly important in poorlyunderstood conditions such as chronic fatigue syndrome (Ware 1992). Interviews of50 chronic fatigue sufferers in the United States showed that others often defined theproblem as not real, as being ‘in the head,’ called delegitimation by Ware. Symptomssuch as exhaustion, depression, muscle pain, and poor concentration are trivializedand dismissed by others as being problems of everyday life. Some patients are nottaken seriously because they do not look sick enough. Because physicians cannot finddefinitive signs of disease, the problem is defined as psychosomatic. One respondentsaid, ‘They [doctors] [p. 202 ↓ ] would say things like, “You can't be experiencing whatyou are experiencing. You need to see a psychologist. You aren't as sick as you thinkyou are’” (Ware 1992: 351).

Loss of a sense of realness, of legitimacy, also affects individuals disabled by spinalcord injury, traumatic brain injury, or stroke. The body's physical limitations afterstroke, for example, and the extreme dependence on others during rehabilitation, areexperienced as an assault on the self (Kaufmann 1988: 342). One patient said: ‘Youcan't imagine how frustrating it is when you are dependent on all these people for yourevery move.’ (p. 343). The sense of being constrained by the body, and the inabilityof the self to master the body, is experienced as failure. Feelings of dependence, andfrustration with a medical system that is supposed to cure but cannot in cases of stroke,



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are particularly salient when patients live in a culture that values autonomy and trustsmedical competence.

In rare cases stroke brings on almost total paralysis of the body. It is instructive toconsider what happens to the sense of self when the body is incapable of movementand 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 hisrelationship with his children through hospital visits and outings by wheelchair to thebeach, 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 toruffle 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 maintainhis sense of self, to prove that he has not become a vegetable' and that his mind isintact. Yet in his relations with others, and in his own memories of the past, Baubysenses 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).

Terminal Illness

Patients with terminal cancer also experience a sensation of ‘fading away,’ a transitionthat involves redefining the self in respect to the reality of illness, weakness, andimpending death. As family members note physical decline in the patient, they begin torealize that he or she will probably not recover. In a study of palliative care in westernCanada, interviewees described the transition ‘as starting to disappear’ or ‘feelingeroded’ (Davies et al. 1995: 4). One woman said, ‘The physical me is no longer here asI was … it seems that I'm trapped in this sort of helpless little carcass. But my mind andmy soul, I think, are the same’ (p. 9). Here the redefinition of self involves accepting thephysical 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 reflecton their lives, their values and priorities, and the beauty of nature as they look for thespiritual meaning of the illness. Spouses often focus on their relationship, and despite



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the pain of the situation may perceive the last months or weeks together as ‘a beautifultime in our lives’ (p. 45).

Family dynamics, either negative or positive, are crucial elements in the experienceof illness. Lyles (1993) describes an argument with her father that occurs after hermother's mastectomy. Infuriated with her father's seemingly callous attitude towardher 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 haskept a vise on my lips. If she is going to die, I need not try to act quiet, tame, andladylike any more … I am miserable at my mother's dying, but fiercely content and therealization that with that terrible event, my deepest self has begun to be born’ (Lyles1993: 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 aslayers of deception or denial filter communication about treatment and the long-termprognosis. An ethnographic study of children with leukemia and their families showedthe centrality of ‘mutual pretense’ in communication about the child's state of health(Bluebond-Langner 1978). The pretense in this case involves communication thatsuggests that the child is not dying, despite all evidence to the contrary. In fact, evenyoung children become aware of the changes in their health status, learning from otherchildren 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 thischild will not necessarily discuss his leukemia directly with the mother. By not disclosingthat 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 fromknowledge of the prognosis or awareness of the impending ‘irrevocable separation’ (p.216). In addition, hospital staff practice mutual pretense [p. 203 ↓ ] with children.Bluebond-Langner found that staff were uncomfortable around the parents whopracticed ‘open awareness’ and disclosure with their children, believing that suchparents increased the child's difficulties.

While it is clear that the fear of loss and separation creates difficulties in communicationin families when one member is critically or terminally ill, illness also creates a binding



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inter-dependency that is both enriching and stifling. Murphy, writing of his progressiveparalysis, observes that his wife is ‘tied down by me, her actions are severely limited byme, and my needs are never absent from her mind … we are both held in thrall by mycondition – we are each other's captives’ (Murphy 1987: 199). He notes that this degreeof dependence is associated with debased status in American society, where autonomyis expected of adults and dependence is considered childish (p. 201).

Unresolved Issues

Bioethical Dilemmas

Marshall (1992) presents a thoughtful discussion pertaining to the real and potentialcontributions of anthropology to bioethics. She emphasizes the importance of ahermeneutic interpretive approach to understanding the personal experience ofbioethics. Importantly, ethics and values cannot be separated from social, cultural,and historical determinants that regulate both the definition and resolution of moralquandaries. ‘Of critical importance is the inherent complexity of individual and culturalvalues concerning the nature of illness, the management of medical care and the use ofmedical technology’ (1992: 62).

Within health-care delivery there exists the conundrum of cultural sensitivity/competence and clinical standards and professional ethics. Clinicians and socialscientists alike wrestle clinically and academically with medical issues that arestrongly influenced by cultural values and beliefs as well as by professional ethics ofbiomedicine. The resolution of these dichotomies has no easy solution. What is neededis a broad spectrum of methods and investigators to study the personal experiences ofhealth and illness.

Increasingly, social scientists are providing important insight into the discipline ofbioethics. Kleinman, in Writing at the Margins (1995), critiques bioethical approachesthat ignore the social and cultural components in ethical discourse and those whodo not address the personal experience in ethical decision making. Examples ofanthropologists studying bioethical issues from an ethnographic perspective include



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Lock and Honda's (1990) study of the meaning of death in Japanese society in relationto 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 centuriesold Japanese moral and cultural meaning of death often clash.

The illness narratives of the dying process of elderly parents, as experienced by theirmiddle-aged daughters, illustrate the personal experiences of ethical decision makingand the powerful influence of medicine in controlling the dying experience for bothpatients and families (Rubinstein 1995). Rubinstein's study describes the importanceof considering the values of society and the insidiousness of stigmatization (ageism),the irreducible subjectivity of illness for families, and the complex ethical dilemmassurrounding end-of-life decisions.

Legislative decisions impose widespread mandates on ethical decision making.Sometimes these political decisions have serious consequences on the personalexperience of illness. Carrese and Rhodes' (1995) interdisciplinary, focusedethnography of bioethics on a Native American reservation presents one such dilemma.The Patient Self Determination Act (PSDA), enacted by Congress in 1991, mandatesthat any health-care facility receiving Medicare or Medicaid reimbursement must informits 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 underthe mandate to comply with the provisions of the PSDA. The results of Carrese andRhodes' study demonstrate that biomedicine's principles of autonomy and patients'rights of self determination sometime conflict with the Navajo belief that languageshapes reality. Negative information (discussion of death, poor prognosis, and end oflife decisions) conflicts with the Navajo concept of hozho and is viewed by Navajo aspotentially harmful. The researchers concluded that because 86 per cent of their Navajoinformants considered advance care planning a dangerous violation of Navajo values,policies complying with the Patient Self Determination Act are ethically troublesome andwarrant reevaluation. This study not only illustrates the incongruence between culturalbeliefs and government policy, but also the applied potential of the study for changingpolicy.

Jezewski (1993) explored the complexity of end-of-life decisions based on thenarratives of nurses. The study focuses on nurses' experiences with patients and



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families, as those patients and [p. 204 ↓ ] 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 experiencesof patients, families, and staff differ. Interpersonal conflict (conflict between patients,families, and/or staff) centered on differences in personal experiences and culturalvalues. 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 womanrefused to consent to a blood transfusion because of her religious beliefs. The physiciantried to coerce the woman into the transfusion or a DNR status because he did not wantto be responsible if the woman died or coded because she refused the transfusion. Theinteraction between the physician and the patient created a crisis situation for both. Thewoman felt intimidated with the decisions she was being asked to make; one optionwhich was against her religious beliefs, and the other, which in her perception, indicatedthat the medical team was giving up on her care. The woman was treated without atransfusion and was eventually discharged from the hospital, but the personal strugglefor the patient and the family added stress to their illness experience.

Future Directions

Interdisciplinary Research on Perceptionsof the Environment

Multiple perspectives allow us to look productively at health phenomena at themacrocultural level. Study of ecology and health especially warrants the input of severaldisciplines (Follér and Hansson 1996). Medical ecology, medical geography, andepidemiology are inherently multidisciplinary, integrating clinical, statistical, and socialscience concepts. Nevertheless, these approaches often rely on quantitative methods,and research in the ecology of health needs to emphasize qualitative, experientialunderstanding of the meanings of risk and pollution.



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Clinical findings in studies of Love Canal and other ‘contaminatedcommunities’ (Edelstein 1988) have been ambiguous. There is some effect of toxicexposure on children's growth patterns (Paigen et al. 1987). Self-reported incidenceof a wide range of health problems is greater in the areas with the greatest exposureto landfill chemicals (Levine 1982). Missing from these studies is assessment of thepsychosocial impacts of living in communities labeled as contaminated. Fitchen'sethnographic research (1989) on the symbolism of the home, and how the meaning ofhome changes for those whose groundwater becomes contaminated, represents theapproach we are advocating.

Edelstein's work (1988) also offers a model. Edelstein notes that toxic exposureaffects people's lifescape, that is, ‘their shared social and personal paradigms usedfor understanding the world’ (Edelstein 1988: 11). In the communities of Love Canal(evacuated after discovery that homes and schools were built on chemical wastedumps) and Legler (with drinking water contaminated by nearby waste dumps), peoplefound their lifescapes transformed as the level of toxicity in their neighborhoods becameclear. Trust in the environment, in other people, and especially in the governmentdiminished, and a sense of personal control was lost. Health seemed far less attainableover the long run, and people felt vulnerable. Past health problems, miscarriages, anddeaths were reinterpreted in reference to new information and the new perception of theenvironment as disease-causing (p. 51). Children became especially sensitized to fearof contact with water, to awareness of the strain on their parents, and to generalizedanxiety. Edelstein's study demonstrates a methodology that should serve medicalanthropology well into the next century.

Multiple Methods Approach to Studying thePersonal Experience of Illness

The traditional survey and broad-based ethnographic studies of the social sciences areevolving into more sophisticated methods of data collection and analysis. Triangulationin social science research is becoming the norm. Denzin (1978) describes four differenttypes of triangulation in research – methodological, data, investigator, and theoretical.Triangulation refers to the use of several means of verifying, confirming, and enriching



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the findings of a study. Triangulation in research involves using multiple investigators,more than one means of data collection, and/or multiple methodologies or theorieswithin one study. Janesick (1994) adds a fifth type of triangulation – interdisciplinarytriangulation, in which investigators from multiple disciplines conduct studies togetherto give a richer context to the findings. Multidisciplinary research is becoming moreprevalent, as are increased numbers of articles in the social science literature onmethodology.

[p. 205 ↓ ] Social scientists are increasingly advocating multiple methods to studythe personal experience of illness/wellness. Emphasis on a broader, more holisticdecision model for the study of illness beliefs and behaviors dictates a change in theway help seeking is investigated. Pelto and Pelto (1997) suggest a methodology thatfalls between traditional study of cultural belief systems and the quantitative survey thatemphasizes knowledge, attitude, and practices. They call for a more comprehensiveinvestigation, including intracultural variation and the effect of macrosocial variables,such as economic influences and political structure, on decisions regarding the seekingof treatment. The research protocol known as focused ethnographic studies (FES) wasdeveloped by the Acute Respiratory Infection (ARI) Programme of the World HealthOrganization (WHO 1993). Pelto and Pelto state, ‘the research approach is designedto explore the systematic patterns of cultural knowledge concerning specific illnesscategories in relation to actual behaviors involving those illnesses and accompanyingsymptoms to obtain operationally important information and insights on specific healthproblems’ (1997: 155).

The FES method is focused on collection of emic data (explanatory models) as well ascollecting data on actual episodes of illness so that cultural statements of participantscan be compared to their actual behaviors as the illness unfolds. Questions asked ofinformants 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 focusedethnographic study protocol. FES is particularly useful for researchers in the ThirdWorld as well as in industrialized health-care systems, and may be integrated with therapid assessment procedures developed by Scrimshaw and Hurtado (1987) for briefethnographic surveys of primary health-care services.



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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 ecologicalframework, it is an important method because of its emphasis on the personalexperience of illness, the decision-making context, and the macrosocial variablesthat affect personal decisions surrounding illness. Studies of migrant farmworkercommunities in the northeast United States, with particular focus on health-care-seekingbehavior, illustrate this approach (Jezewski 1990).

Data collection in social science, particularly studies that explore the personalexperiences of health and illness, is becoming more sophisticated as well. Certainlyin-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 morerecently, social scientists are turning to other qualitatively oriented methods of collectingdata. Focus groups have long been used in the business/marketing world and morerecently in academia. Many useful resources (Greenbaum 1997; Krueger 1994; Morgan1997a, 1997b;) are available to help researchers become familiar and adept at groupinterviewing. Coreil (1995) provides an extensive historical account of the use of focusgroup interviews in research as well as discussion of the strengths and weaknesses ofconducting group interviews in social science research. Coreil prefers the term groupinterviews, and she outlines four different types of group interviews, with focus groupsas one type. Coreil's distinction between different types of group interviews is mosthelpful to the social scientist by providing the scope of possibilities for those who arenew 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 offocusing only on either the microcultural or macrocultural levels of illness. Studies ofpersonal experiences conducted by social scientists and others outside the traditions ofanthropology and ethnography need to acknowledge the concept of culture and to makethe influence of culture explicit in their data collection and analysis.

Conclusion

In Medicine, Rationality and Experience, Byron Good (1994) discusses and critiqueswhat he labels the four orienting approaches in medical anthropology: empiricist,



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cognitive, meaning centered/interpretive, and critical. He states that although eachapproach has strengths and weaknesses, disease and human suffering cannot becomprehended from a single perspective. These approaches should not be viewedas a dialectic to be resolved through synthesis, but rather as multiple lenses to studycore issues facing medical anthropology. Good's ideas can be taken a step further. Notonly should social scientists embrace multiple theoretical approaches, but of necessitythey must also embrace the multiple research methodologies that are best suited to thetheoretical approaches guiding issues crucial to understanding human experience.

[p. 206 ↓ ] Perhaps because it fits poorly into quantitative research, phenomenologyhas as yet gained few supporters in medicine or in biocultural anthropology. Manyresearchers and clinicians are ambivalent about the value of the personal narrative asthe primary source of data. It is difficult to compare narratives or to generalize from theirsubjective 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 thatit involves an ‘experience-near’ methodology. The clinician must listen empatheticallyto the patient, a labor-intensive and potentially emotionally draining interaction for mostpractitioners, especially since the information conveyed is thought to be tangential tothe ‘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 fromheadaches. She described domestic abuse by an alcoholic husband, the burden ofcaring for her senile mother-in-law, and her worries about her difficult son. Sympatheticbut impatient, a student interrupted, ‘“But what is the real cause of the headaches?”’When rich interpersonal details are considered extraneous, we know that a narrowbiomedical model dominates.

Health and illness are broad, multifaceted domains, but we are not training our studentsto appreciate the complexity of these domains. The person's feelings of strength orweakness, joy or depression, energy or exhaustion are usually omitted from casestudies. Self-awareness of changes in puberty, pregnancy, menopause, progressiveillness, and aging (and self-assessment of what physical signs are normal or abnormalor threatening to one's physical and emotional integrity) are too rarely probed in clinicalor ethnographic interviews. For a profession that claims to know much about the



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spectrum of human existence, medical anthropology still knows too little about theexperience of wellness and illness, of birth and death, of grief and comfort, of terror andecstasy.

In this chapter we have taken the position that the study of illness and wellnessexperiences is of value in its own right. Our argument is not that study of individualexperience should replace objective study, but rather that the two approaches can becomplementary. We have also advocated an integrative, multivariate model that linksthe individual, the community, and larger political and economic forces. This model willbe of use not only to anthropologists, but also to clinicians, public health researchers,and medical ecologists.

Ann McElroy, and Mary Ann Jezewski

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