The Cultural Meanings and Social Uses of Illness

A Role for Medical Anthropology and Clinically Oriented Social Science in the Development of Primary Care Theory and Research

Arthur Kleinman, MD Cambridge, Massachusetts

Basic research that is conceptually and methodologically in­ novative and that fosters long-term research programs should play a role in the academic development of primary care, alongside more practical applied studies of specific clinical problems. A creative tension between the two has been a dis­ tinctive attribute of academic medicine and should be fostered in family medicine and other primary care disciplines. The bio- psychosocial model offers a paradigm for the incorporation of clinically oriented social science research as one basic science approach in which primary care researchers can receive ad­ vanced training and pursue an academic career. The author briefly illustrates such a career with reference to studies (his own included) on the social uses and psychocultural meanings of illness. Somatization, a major problem in primary care, is illuminated by such a clinically applied social science research framework. Developing the scientific basis of an academic dis­ cipline involves intellectual education in systematic scholar­ ship to create and critique concepts as much as it requires training in the application of rigorous research design and powerful statistical techniques.

Two levels of academic endeavor should de­ studies of discrete, salient, health care problems velop in primary care if family medicine and the based on specific methods and instruments taken other primary care disciplines are to become via­ from epidemiology, health services research, bio­ ble academic enterprises: (1) practical applied medicine, and psychiatry that are drawn upon to study highly focused, operationalized research Presented at the North American Primary Care Research questions; and (2) concepts, theoretical models, Group Meeting, Columbus, Ohio, May 20, 1982. From the and research approaches that can contribute to a Department of Social Medicine, Harvard Medical School, the Department of Anthropology, Faculty of Arts and Sci­ unique scholarly discourse on primary care and ences, Harvard University, and the Department of Psychia­ that can provide the intellectual foundation for try, Harvard Medical School at The Cambridge Hospital, Cambridge, Massachusetts. Requests for reprints should self-contained research programs which together be addressed to Dr. Arthur Kleinman, Department of An­ create a science of clinical practice. thropology, 330 William James Hall, Harvard University, Cambridge, MA 02138. On level 1 there may not be, nor need there be,

® 1983 Appleton-Century-Crofts

THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3: 539-545, 1983 539 MEANINGS AND USES OF ILLNESS understanding of the conceptual basis of the re­ essence of what has come to be recognized as the search methods imported into primary care, and best in academic clinical medicine. This system­ indeed nonclinician researchers trained in applied atic tension between theory and practice is what or even basic science may be brought in to apply keeps academic medicine vitally oriented to prac­ them. But on level 2, researchers struggle with the tical problems while at the same time avoiding be­ translation of concepts from other fields into new coming either (1) unscientific or pseudoscientific, ways of conceptualizing and analyzing health care or (2) overly scientific and clinically irrelevant. problems. They create new methods or remake old That there is often an imbalance in some disci­ ones. They, moreover, ask questions and search plines toward the latter and in others toward the for answers at a fundamental level, rethinking core former does not invalidate this goal; it only indi­ clinical concerns. Level 1 researchers often do not cates how important it is to maintain this difficult possess advanced research training, or if they do, balance at the heart of clinical science. Further, it usually is not in a basic science. Rarely do they this is the appropriate model for how the primary see themselves as contributing to scientific in­ care disciplines need to develop if they too are to quiry. They are clinicians who are trying to answer achieve academic success. particular clinical questions. For them the best may be the enemy of the good. They want to be able to apply some highly specific research tech­ niques and statistical skills for highly practical purposes. These technologists want their scientific skills to be “good enough” for performing particu­ lar research tasks. They are not questioning theory or building long-term research programs whose individual projects are intended to set out and test Current Status of Research a line of reasoning. Indeed, it is frequently crucial When applied to the primary care disciplines, to the success of such applied studies that their what does this admittedly ideal-type model reveal? completion is feasible in a relatively restricted First, on the applied level, family medicine and time frame. This means that they usually cannot the other primary care disciplines are already off explore a question in great depth. to a reasonable start. Primary care practitioners In contrast, level 2 scholars see themselves have drawn on the relevant methodologies of bio­ very much as scientists who are about the lifetime medicine, epidemiology, health services research, labor of building a separate field of scientific in­ and clinical psychiatry and psychology to conduct quiry. They have been systematically trained to be individual projects. Researchers from these other conceptually sophisticated, to enter, under super­ disciplines are acting as collaborators. The data vision, a major intellectual tradition, review its base is greatly expanding. A critical mass of re­ sources and the current status of its academic dis­ searchers has been created that is actively debat­ course, and engage in critical ongoing dialogue on ing future academic directions. These are no small its core themes and findings. Masters of the ideas achievements. This practical level of research, behind their techniques, these researchers take even in the presence of severe budgetary con­ theoretical questions extremely seriously and aim straints, will continue to grow and mature; its to build methods and collect data to systematically principal contribution will be the data it generates advance rigorous and critical testing of ideas. about important clinical problems and the academic I hey provide their academic disciplines with intel­ infrastructure it builds in schools of medicine, lectual power and scientific status. both of which will help establish the primary care In biomedicine it is the creative tension be­ disciplines as legitimate academic enterprises. tween each of these levels, sometimes even in the On the second level hardly anything is seen yet. same researcher, and the distinctive but related Where are the concepts being built and pulled to­ interests they support which sustain that remark­ gether into original theory, where are the new ably productive dialectic between applied and methodologies being created to test hypotheses, basic knowledge, clinical and intellectual en­ where are there systematic attempts to train re­ deavor, trade and science that strikes one as the searchers to translate relevant work from other

540 THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983 MEANINGS AND USES OF ILLNESS disciplines, not this particular technique or that program. Clinical scholars should be trained who particular experimental design, but key concepts become primary care epidemiologists, others who that can help build a major research program? become primary care health services researchers, (One of the few signs of this happening is the early, and still others who link primary care to specific but important, effort of Medalie’s family medicine medical social sciences (anthropology, sociology, group at Case Western Reserve to form a research social psychology). There should also be primary program containing several and varied studies cen­ care physicians trained in relevant biological re­ tered on the understanding of the family’s contri­ search approaches. This cohort of young academ­ bution to social support and its influence on health ics would conduct work on both level 1 and level 2, maintenance and illness outcome.) In the absence but principally the latter and, it is to be hoped, would of substantial endeavor on level 2, there is a seri­ receive long-term support from their institutions ous imbalance in the creative dialectic between and academic disciplines to build careers as schol­ applied and fundamental science in primary care, ars. Around them would coalesce research groups and this raises the distinct danger of allowing engaged in the elaboration of well-defined re­ practical research to stagnate and slowly slide into search projects. technology divorced from intellectual concern, One particular area of level 2 research that fam­ which eventually must mean poor science or no ily medicine and other primary care disciplines can science of primary care at all, and no clinical and should actively cultivate, is medical anthro­ scholars in the real sense of that evocative term. pology and other clinical social sciences. The pri­ Lacking level 2 contributions, primary care may mary care disciplines could become the major become merely a testing ground for other fields’ venue for the introduction of social science into scientific developments without a core academic medicine and for the application of the biopsycho- program of its own, somewhat like an underdevel­ social paradigm to health care. Social science oped country that has lost control of its own future provides the language and conceptual apparatus to to outside colonial interests. study the psychosocial aspects of illness and care. A science of clinical care requires social science joined to biomedicine and psychiatry as its intel­ lectual basis. But such clinically relevant social science cannot be developed solely by social sci­ entists. Clinician-social scientists and social sci­ entists with clinical teaching and research experi­ ence are needed to carry out the difficult but crucial task of translation and integration. Needed Directions for Research The biopsychosocial paradigm,1,2 which has So much for the problem. How can it be reme­ been accepted by some primary care practitioners died? The goal is to develop level 2 research in as a model for clinical practice, deserves to be primary care while continuing to strengthen level 1 promoted as a powerful paradigm for research that studies. To do so, it is necessary to train in depth sets the primary care field off from the traditional a small number of highly skilled primary care re­ disciplines of biomedicine, links primary care with searchers who possess a deep commitment to de­ other disciplines (notably the behavioral and social veloping its academic base, each in a relevant sci­ sciences), and provides it with an autonomous entific discipline that they can master in two to theoretical and methodological orientation to its three years of advanced study, whose approach subject matter; indeed, it casts that subject matter they not only can practically apply—as is done in a new form which connects it to some of the now with faculty training in the Robert Wood most interesting current interdisciplinary devel­ Johnson Foundation program—but which they can opments in the academic world (eg, psychoendo- systematically translate into original primary care crinological and other psychophysiological studies theory and methods. Here the desired terminal of stress; studies of the interrelationship of stress, competency at the end of training is an ability not coping, and social supports in illness onset; socio- just to design and conduct individual studies but, linguistic research on the structure of health more importantly, to develop a long-term research professional-client discourse and its influence on

THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983 541 MEANINGS AND USES OF ILLNESS the assessment of therapeutic outcome; medical training of primary care clinical teachers in bio­ ethnographic studies of lay help seeking and self- medical research—into potential strengths. care and their effects, as well as of physicians work, and the negative impact on them of work- related stress; and much else besides). Since sci­ entific research is increasingly becoming interdis­ ciplinary, the biopsychosocial model is at the very Social Uses and Meanings of Illness as a cutting edge of new developments in science. Fur­ Research Area thermore, it is a research guide to the study of how key large-scale social problems in health and To illustrate these points briefly, it is appropri­ health care affect the individual patient and clini­ ate to address a problem that should be of special cian at the microclinical level. interest: the social uses and personal and cultural The biopsychosocial model as a paradigm for meanings of illness. This subject holds consider­ interdisciplinary science integrates psychological able relevance for primary care, demands that re­ and social with biological variables and brings the searchers have training in social science, is par­ social sciences into medicine in the same way that ticularly suitable for an integrated biopsychosocial tertiary care internal medicine specialties build a perspective, and allows the researcher to move bridge between medicine and the biological sci­ between practical and theoretical levels of aca­ ences. It is, in addition, a conceptual approach demic work. The purpose here is to adumbrate a more adequate for a science of clinical care, since type of research problem that mandates level 2 it seeks to unite clinical sciences’ biomedical and research. Because this subject is a large one, it social science bases. Whereas biomedicine has lit­ requires discussion in terms of a more manageable tle to contribute to the study of physician-patient issue: chronic somatization.4 7 communication, the analysis of clinical reasoning, Somatization is the presentation of somatic the study of help seeking, and the myriad of psy­ complaints by the patient either in the absence of a chosocial issues that make illness behavior a cru­ medical disorder or as amplification of one, where cial problem for clinicians, the biopsychosocial the biomedical assessment of pathology cannot approach is a powerful way of bringing to bear explain the degree of perceived disability and ex­ knowledge and research strategies from social sci­ pressed complaints. Acute somatization is fre­ ence to help examine these and many other quently the pathology of acute stress, with affec­ relevant issues.U3A But by insisting on relating so­ tive arousal responsible for psychophysiological cial science to biological issues and clinical work, symptoms in which the somatic side of the prob­ the biopsychosocial model overcomes some of the lem is amplified and the psychological minimized notable weaknesses of social science studies of or denied. Subacute somatization most often in­ medicine that are divorced from clinical perspec­ volves a psychiatric disease: major depressive tive and thereby often become irrelevant to pri­ disorder, panic disorder, or phobic disorder. Both mary care. Finally, now that psychiatry seems types of somatization respond well to psychiatric caught up with the revolution in the neurosci­ intervention.7 Chronic somatization, however, is ences, at least for the next decade, the primary an entirely different kind of problem, one much care disciplines have the somewhat surprising op­ less responsive to standard psychiatric treatment. portunity of becoming the major academic venue Here somatization has become chronic illness be­ for the biopsychosocial paradigm and therefore for havior, a sickness career.8 Even though it may be social science in medicine. (Of course consulta­ possible to make a psychiatric disease diagnosis, tion-liaison psychiatry and its psychosomatic re­ providing effective treatment for the disease fre­ search tradition are powerful allies that have al­ quently will not end the chronic illness behavior. ready established a beachhead.) This is the point In chronic somatization, of which chronic pain to underline: the biopsychosocial paradigm fits the syndrome is a leading example in the United intellectual needs of the primary care disciplines, States, interpersonal and institutional uses of the offers practical strategies for their academic de­ sick role, along with its personal and cultural velopment, and has the further virtue of transfer­ meanings, are commonly the major reasons for the ring some of the weaknesses—such as the lack of persistence of disability. For example, headaches

542 THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983 MEANINGS AND USES OF ILLNESS or low back pain may function to change jobs, get description, taken together with various quantita­ time off from work with compensation, manipulate tive measures, can be a standardized research spouse or children, sanction life failures (in method for assessing validity. It is especially valu­ school, career, love), legitimate dependency able in studying social and cultural significance, needs, discharge anger, and so forth. Illness mean­ eg, illness beliefs, interaction norms, social gain, ings may be unique to the individual, shared in the ethnic help seeking, and treatment responses, and family (and a result of family problems or a it is the appropriate method to describe the work maladaptive way of coping with such problems), of doctoring. or hold culturewide significance. Neurasthenia Physicians tend to be negatively predisposed to among Chinese, one of the most prevalent outpa­ qualitative ethnography, since it lacks the numerical tient diagnoses in China, is an especially common indices and statistical values that they associate example of the last.8 with “ science.” But this perspective is erroneous. Astute clinicians probably intuitively recognize Qualitative ethnography is a well-developed social at least the cruder of these illness uses and mean­ science method that is especially useful for study­ ings, but how can they be systematically studied? ing meanings. As do all research methodologies, Rarely will they be disclosed by questionnaires. it needs to be systematically learned along with Patients are often unaware of these aspects of ill­ standards for assessing appropriate and effective ness, some of which may hold unconscious signifi­ use. Description is a perfectly acceptable scientific cance for the individual (unacceptable dependency methodology in ethnology and in animal behavior needs, passive-hostile behavior) or be unacknowl- studies, astronomy, archaeology, and gross and edgeable social fictions. An illustration of the lat­ microscopic anatomical studies. Increasingly, ter is financial gain from illness which, because it there are ways of quantitating observation, as in runs counter to the moral prerequisite of the sick the clinically applied medical anthropology ex­ role that the sick person must want to get better, planatory model and illness problem techniques,2,4 the patient cannot state, even if he or she has in­ but the important point to make is that quantita­ sight into the situation, because to do so would be tion and statistical assessment per se do not a sci­ to brand him or her a malingerer and therefore no ence make. If the ethnography of meaning is not longer legitimately sick. For the same reason, legitimated in primary care research, even though structured interviews with patients, even those it is legitimated in anthropology, sociology, and conducted by experts, may be unavailing, espe­ social psychology, then meaning will not receive a cially when the chief significance of illness is not scientifically appropriate assessment in primary psychological, but social. Even the uncovering of care. Attribution research in psychology, survey psychodynamic significance may be a difficult, research in sociology, and ethnoscientific studies lengthy, and uncertain process involving what in anthropology are quantitative approaches to amounts to the development of a privileged psy­ meaning to which statistical evaluation can be chotherapeutic relationship with the patient. applied. But these techniques are, for the reasons In the face of such problems, a primary care cited, less appropriate to the study of the symbolic researcher might quite reasonably conclude that meaning of chronic somatization than ethnography this subject, though of potentially great clinical and psychodynamic exploration, or interpretive importance, cannot be researched (ie, studied sci­ sociological and historical inquiry, for that entifically). But this would be wrong. Social sci­ matter.9,10 ence methods are the appropriate ones for this In a study of chronic somatization in China, the project and range from ethnography to attribution author used all four of these qualitative research research methodology. Ethnography, the core approaches to supplement quantitative clinical de­ methodology of anthropology, is systematic de­ scription and psychiatric rating scales so as to scription of both qualitative and quantitative decipher illness meanings.8 The upshot was docu­ types. Quantitative ethnography includes various mentation that, though most neurasthenia patients scaling techniques, ethnoscientific eliciting studied in Hunan suffered from major depressive frames, sociolinguistic instruments, and meas­ disorder, their chronic somatizing illness behavior urement of time, space, change, and other coordi­ did not end when their depression was treated with nates of behavior and communication. Qualitative antidepressant medication. The reason for this

THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983 543 MEANINGS AND USES OF ILLNESS was that almost three fourths were employing their tural meanings of illness, this means relating clini­ illness to change work and gain leverage over the cal investigations to ethnomedical and ethnopsy- Chinese work-disability system. Here ethnogra­ chological studies of indigenous illness belief phy provided crucial information on the institu­ systems as well as to social psychological work on tionalization of somatization and its immense so­ the use of explanations to justify social action, cial structural significance that completely altered sociological studies of sick role negotiation and the the research understanding of the data. illness labeling process, sociolinguistic studies of Applying ethnography, then, forces the re­ the language of the emotions and of interpersonal searcher to grapple with basic social science ques­ manipulation, historical inquiry into the work/dis- tions ranging from what constitutes validity and ability system, and psychodynamic and cognitive reliability to the critical examination of hypotheses behavioral research on somatic modes of commu­ concerning social behavior and its determinants nication. Placed in this context, primary care that provide primary care studies with more rigor­ research must be simultaneously responsive both ous evaluation of ideas than is forthcoming from to highly pragmatic and to theoretical levels of many clinical and health services research studies. analysis. In short, it becomes an autonomous aca­ Medical anthropology and sociology have already demic medical discourse with its own relevant in­ developed critical discourses on stress, behavioral tellectual and scientific context. deviance, social supports, family structure and Personal work with building primary care function, help seeking, illness behavior, sick role, theory via the concepts of explanatory models, a and many other social dimensions of health and dichotomy between disease and illness, specifica­ sickness that offer the primary care researcher tion of illness experience problems, differential more than just researchable variables. These so­ practitioner and patient cultural constructions of cial science discourses are frameworks for inter­ clinical reality, and a negotiation model of physi­ preting research data, integrating them with major cian-patient relationships follows this model.5 By bodies of findings and analytic concepts for mak­ linking longitudinal studies of cultural influences ing sense of findings, generalizing data-based ideas on sickness and care with medical anthropology within wider intellectual contexts, and providing and other social science discourses on these top­ them with established standards of academic crit­ ics, the author’s research program both generated icism. That is to say, learning medical anthropol­ practical treatment strategies and elaborated a ogy and sociology is much more than learning how theoretical model of the structure and functions of to use certain methods or tests. It is learning a way health care systems that could be used to concep­ of handling concepts, systematically thinking tualize primary care in American society and cross through problems, creating a context of criticism culturally. Moreover, this work has provided a di­ for one’s work, and linking it to core concerns in rection for young primary care researchers who social theory. Indeed, this is the way to expose have worked in the research program.6,7,n'13 inchoate theorizing in primary care to systematic This particular research program, limited as it academic criticism so as to generate a robust aca­ is, is only a minor and flawed example of what is demic discourse that is distinct from, yet comple­ needed: the creation of longitudinal research en­ mentary to, biomedical ideas. terprises in which clinical scholars are systemati­ Hence primary care research on family func­ cally and rigorously trained to work within major tioning in health maintenance and illness should be social science intellectual traditions to construct linked to substantial social science data bases and mid-range theory at a high level of academic so­ theoretical systems for studying family structure phistication in order to better conceptualize the and function, and the same can be said for the vast domain of clinical practice.11,13'19 While this study of illness meanings, physician-patient com­ paper argues for an anthropological orientation to munication, help seeking, therapeutic compliance such work, sociological, social psychological, and and satisfaction, ethnicity and medical care, and social epidemiological, as well as historical, geo­ a myriad of subjects relevant to primary care re­ graphic, economic, philosophical, and political searchers. It is the responsibility of primary care science, approaches also can (and should) be de­ researchers trained in social science to make these veloped in clinical science to help create level 2 linkages. With regard to the social uses and cul- research in academic primary care.17,20"26

544 THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983 MEANINGS AND USES OF ILLNESS

disciplinary Perspective. Cambridge, Mass, MIT Press, 1974 References 15. Lazare A, Eisenthal S, Frank A, Stoeckle J: Studies 1 Engel G: The need for a new medical model. Sci­ on a negotiated approach to patienthood. In Gallagher E ence 196:129, 1977 (ed): The Doctor-Patient Relationship in the Changing 2. Smith CK, Kleinman A: Beyond the biomedical Health Scene. DHEW Publication No. (NIH) 78-183, Gov­ model. In Taylor R (ed): Family Medicine: Principles and ernment Printing Office, 1978, pp 119-139 Practice, ed 2. New York, Springer-Verlag, 1983 16. Lewis G: Knowledge of Illness in a Sepik Society. 3. Leigh H, Reiser M: The Patient: Biological Psycho­ London, Athlone Press, 1975 analytical and Social Dimensions of Medical Practice. New 17. Brody H: Placebos and the Philosophy of Medicine. York, Plenum, 1980 Chicago, University of Chicago Press, 1978 4. Kleinman A: Patients and Healers in the Context of 18. Stoeckle JD, Barsky A: Attributions: Uses of social Culture. Berkeley, Calif, University of California Press, 1980 knowledge in the "doctoring” of primary care. In Eisenberg 5. Katon W, Kleinman A, Rosen G: Depression and L, Kleinman A (eds): Relevance of Social Science for Medi­ somatization: Part I. Am J Med 72:127, 1982 cine. Dordrecht, Holland, D. Reidel, 1981, pp 223-240 6. Katon W, Kleinman A, Rosen G: Depression and 19. Waitzkin H: A Marxist analysis of the health care somatization: Part II. Am J Med 72:241, 1982 systems of advanced capitalist societies. In Eisenberg L, 7. Rosen G, Kleinman A, Katon W: Somatization in Kleinman A (eds): Relevance of Social Science for Medi­ family practice: A biopsychosocial approach. J Fam Pract cine. Dordrecht, Holland, D. Reidel, 1981, pp 333-369 14:493, 1982 20. Berkman L: Physical health and the social environ­ 8. Kleinman A: Neurasthenia and depression: A study ment: A social epidemiological perspective. In Eisenberg L, of somatization and culture in China. Cult Med Psychiatry Kleinman A (eds): Relevance of Social Science for Medi­ 6:117, 1982 cine. Dordrecht, Holland, D. Reidel, 1981, pp 51-75 9. Brody EB: The clinician and ethnographer: A psy­ 21. Fagerhaugh S, Strauss A: Politics of Pain Manage­ choanalytic perspective on the epistemology of fieldwork. ment: Staff-Patient Interaction. Reading, Mass, Addison- Cult Med Psychiatry 5:273, 1982 Wesley, 1977 10. Giddens A: New Rules of Sociological Method. New 22. Stone D: Diagnosis and the dole: The function of York, Basic Books, 1976 illness in American distributive politics. J Health Polit Policy 11. Blumhagen D: The meaning of hypertension. In Law 4:507, 1979 Chrisman N, Maretzki T (eds): Clinically Applied Anthro­ 23. Yelin E, Nevitt M, Epstein W: Toward an epidemiol­ pology. Dordrecht, Holland, D. Reidel, 1982, pp 297-324 ogy of work disability. Milbank Mem Fund Q 58:386, 1980 12. Demers RY, Altamore H, Mustin H, et al: An explo­ 24. Mishler E, AmaraSingham L, Hauser S, et al: Social ration of the dimensions of illness behavior. J Fam Pract Contexts of Health, Illness and Patient Care. Cambridge, 11:1085, 1980 Cambridge University Press, 1981 13. Lin KM, Inui TS, Kleinman A, Womack WM: Socio­ 25. Brown G, Harris T: Social Origins of Depression. cultural determinants of the help-seeking behavior of pa­ New York, The Free Press, 1978 tients with mental illness. J Nerv Ment Dis 170:78, 1982 26. Caplan A, Englehardt H, McCartney J: Concepts of 14. Fabrega H: Disease and Social Behavior: An Inter­ Health and Disease. Reading, Mass, Addison-Wesley, 1981

545 THE JOURNAL OF FAMILY PRACTICE, VOL. 16, NO. 3, 1983