AIDS patients around the world cannot afford these drugs. Who has precedence, the share- holders of these multinational corporations or the millions of impoverished AIDS patients whose only hope of longer survival depends on these medications, which their own countries could produce cheaply? Here we see how political-economic priorities—capitalism or socialism and nationalism—affect decisions about what is fair treatment of disease.
Third-world countries are resisting these exorbitant prices and threatening to pro- duce their own generic versions of these drugs. For instance, Brazil has attempted to get the Swiss pharmaceutical giant Roche to reduce the prices or allow the government to manufacture the anti-AIDS drug nelfi navir. Some countries have attempted to produce these drugs themselves but fi nd their efforts blocked by the legal actions of the pharma- ceutical companies, which want to assert exclusive rights to these medicines. Brazilian law allows the government to produce the drug in the case of national emergency and when the companies engage in an abuse of their economic situation. Having decided that the law applied to the case of the AIDS cocktails, Brazil obtained the support of the World Trade Organization in its legal struggle to break the patent of American pharma- ceutical companies and to produce low-cost generic versions of other AIDS treatments.
Negotiated settlements allow the Brazilian state company Far-Manguinhos to produce brand-name AIDS drugs, dramatically reducing costs while still paying the pharmaceutical companies royalties for their patent rights. Here national rights to access to medications are taking precedence over the unbridled economic rights of companies. This strategy has also compelled some drug manufacturers to reduce their prices rather than face the pros- pect of the national laboratories producing generic versions.
There are signifi cant social and cultural dimensions to AIDS, particularly the behaviors that contribute to transmission and the social responses that produce sickness and illness.
Because biomedicine does not have a cure for AIDS, the primary means of addressing the spread of HIV infection is through changing the behaviors that lead to exposure and the social conditions that increase the possibility of infection. Consequently, anthropology has played a signifi cant role in addressing the AIDS epidemic (see the special feature “Applica- tions: Anthropological Approaches to AIDS Prevention”).
of understanding, miscommunication will likely occur, even if provider and patient are from the same cultural group. This can lead to misdiagnosis and inappropriate treatment.
The challenge of cultural competency is to understand culture, language, and con- ceptual systems to help ensure effective care despite differences. The effects of poverty, lack of education, unemployment, children out of wedlock, welfare, drug abuse, and other social problems on daily life and world conceptions generally fall outside the per- sonal experience of providers. Consequently, they are unable to understand the problems of clients, the complicating factors in keeping appointments or adhering to care plans, or patients’ unwillingness or inability to accept the medical regimen. Patient compliance is fostered through an informed response to the ways culture affects care by incorporating client perspectives into treatment plans and public health programs.
Clinical Adaptations to Illness
Clinical adaptations to addressing illness and sickness along with disease are based in the approaches of health beliefs and explanatory models, which elicit patients’ personal and cultural knowledge and expectations as a basis for bridging the differences between patients’ and biomedicine’s worldviews. Helman (1985, 1994, 2001) suggests the follow- ing interrelated strategies for dealing with clinical problems created by differences in biomedical and lay perspectives of disease and illness:
Understand “illness”
Improve communication Increase cultural self-awareness Assess cultural context
Treat illness and disease
Understanding illness involves discovering how a patient and important fi gures in the patient’s life view the origin of the illness, its signifi cance for him or her, its prognosis (outcome), and its implications for other aspects of his or her life (Helman, 1985). To determine these patient perceptions, it is necessary to obtain information on cultural, reli- gious, social, and economic backgrounds and the patient’s health beliefs model and explanatory model (see below).
Improving communication requires that clinicians learn patients’ cultural illness con- ceptions and make clinical diagnosis and treatment intelligible to patients through their views of health and illness. To accomplish this, clinicians must understand patients’
experiences and interpretations. It requires the development of cross-cultural adaptation skills, presented in Chapter Three.
Increased cultural self-awareness, or refl exivity, in the clinical encounter is an aware- ness of how providers’ cultural beliefs affect care. Providers’ social and cultural back- grounds structure their behavior and affect perceptions of patients, their symptoms, and their health care. Awareness of the cultural dimensions of what seems normal can be developed through the kinds of self-assessments provided at the end of each chapter.
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Assessing cultural context is crucial for effective medical care. Socioeconomic factors—
economic status, discrimination, unemployment, and social roles—have implications for illness, presentation for care, and treatment compliance. Cultural systems models and community assessment protocols are provided in Chapter Four as frameworks for assessing the broader social and cultural contexts that affect health behaviors.
Treating illness and disease means that medical treatment must deal with the dimen- sions of illness that affect patients’ emotional, social, and behavioral well-being, not merely their physical conditions. These personal aspects of illness management are described in Chapter Five. Physicians may also address these dimensions through collab- oration with social workers or traditional healers and by educating themselves to address the broader psychological, ecological, political, and symbolic contexts of disease and ill- ness addressed in Chapters Six through Nine.
Health Beliefs Model
The Health Beliefs Model was developed by many contributors (Strecher and Rosenstock, 1997; Becker, 1974). It originated in public health after the recognition that decision- making models shape patients’ preventive actions and treatment responses. This model is based in theories regarding seeking health or avoidance of illness (value) and the per- ceived benefi ts of certain actions (expectancy) (Strecher and Rosenstock, 1997), focusing on patients’ perceived susceptibility to disease, likelihood of contracting a condition, severity of that condition, benefi ts of action, and barriers to care.
The original cognitive orientation was expanded to emphasize perceptions about Availability of services and cost-benefi t analyses of changing behaviors or accessing services
“Cues to action,” information such as billboards or public service announcements that stimulate people’s thinking about needed health behaviors
Self-effi cacy, an individual’s belief in his or her ability to take actions to achieve changes
Self-effi cacy is an important component of engaging in treatment, particularly where conditions are part of lifestyle, such as excessive eating and drug addictions. People have to feel threatened by conditions and believe they can benefi t from changes; they also have to be motivated to alter their behaviors. Even with these extensions, the health beliefs mod- el’s “rationalistic” approach does not address all of the factors affecting patients’ decisions, such as emotions and interpersonal relations. Economic, political, and institutional factors play important roles in infl uencing health behavior, particularly in regard to accessing ser- vices and indicating preventive behaviors.
The health beliefs model makes important contributions to understanding health behavior and improving compliance by addressing the client’s framework. Personal con- ceptions of risks, illnesses, sick-role behaviors, and treatment options shape responses.
Decisions about health behaviors occur within cultural frameworks of beliefs about desired health conditions; individual beliefs about personal susceptibility, severity, and risks; and perceptions of costs and availability of treatment.
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Explanatory Model
Physician-anthropologist Kleinman (1980, 1988a, 1995) articulated the explanatory model, which examines how patients interpret the causes and progress of a malady and how they think it should be treated. The explanatory model elicits the patient’s view of
The cause of the condition, that is, what has happened and how or why The timing of symptom onset: why this has occurred now
Pathophysiological processes: what the condition does to the body
The natural history of the malady: its anticipated course and effects if left untreated Appropriate treatments: what the patient thinks should be done
The explanatory model provides a format for eliciting how a malady is interpreted by both patient and provider, making explicit the models used by both to interpret and explain a malady and decide among possible therapies. Because explanatory models may not be explicit, the process is useful in formulating the different clinical realities of the various participants, particularly giving voice to patients and their families. Explanatory models also give providers a mechanism for developing self-awareness and identifying
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Eliciting an Explanatory Model
I participated as a staff member in a free community clinic in Mexico run by U.S. physicians and medical students. My role was that of translator and consultant. One patient had recently received eye surgery elsewhere, with the eye still bandaged. He was complaining about gas- trointestinal problems (diarrhea and vomiting), nervousness, chills, and an inability to sleep.
The presenting complaints appeared to have nothing to do with the recent surgery or compli- cations and did not fi t together in a diagnosis. The physician was frustrated, unable to deter- mine the nature of the malady, and felt that another issue was going on with the patient. He called on me in a translator role to interview the patient.
I began to elicit the explanatory model—What do you think is the cause of your condition?—
which the patient initially resisted. But on prodding, the patient reported that he had a stomach condition previously treated in a clinic. The physician rejected that diagnosis, based on the patient’s present symptoms and conditions. I continued with the elicitation of the patient’s explanatory model, asking what he thinks is the appropriate treatment. Although he initially evaded response, his wife eventually offered that he wanted a renewal of a previous prescription. The physician indi- cated that it was a powerful sedative for calming the stomach and nerves. His interpretation was that the patient, distressed by the eye surgery and subsequent incapacitation, was attempting to obtain a controlled substance that he had previously used and felt applicable to his present mal- ady because it would reduce tension. Symptoms were being presented to justify the prescription.
APPLICATIONS
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sources of clinical miscommunication. Kleinman (1988a) states that patients’ explana- tory models tend to be context- or illness-specifi c and refl ect patients’ individual psycho- cultural dynamics, assumptions, and preconscious beliefs. Social, economic, or religious factors may also be important determinants of the explanatory model, which may not be scientifi cally correct but, nonetheless, have an internal logic and guide health behavior.
Patient explanatory models play an important role in diagnosis because they provide the conceptual framework within which patients interpret, assess, and express maladies.
These models may reveal that a patient has taken particular remedies or experienced con- ditions of relevance to biomedical diagnosis. They may also reveal patients’ “hidden agendas,” as illustrated in “Applications: Eliciting an Explanatory Model.”
To effectively bridge different perceptions, providers must incorporate patients’ explana- tory model. Kleinman (1988a) notes that patients may resist unless the physician shows gen- uine interest and explains how the questions may help to tailor the treatment plan. Providers must understand patients’ explanatory models to adapt treatment plans to patient beliefs and expectations and achieve a consensus about the nature of the malady and the treatment to be African American CVD and Illness Beliefs
In addressing the higher incidence of CVD among African Americans, the health beliefs model points to questions regarding the awareness they have about their risks and risk factors. Have adequate public health campaigns for raising awareness of CVD been directed at the African American population? For those who recognize their elevated risk of CVD, do they feel that resources are available that are effective in countering the disease, and do they have the sense of self-effi cacy that they can successfully seek the necessary care? The explanatory model approaches reveal that there are signifi cant differences between disease and illness, refl ected in the easily confused distinctions between the biomedical disease hypertension and the African American cultural illness called “high-pertension.” These differences can lead to com- plications for African American cardiovascular patients. Patients confusing the biomedical diagnosis of hypertension with their own similar-sounding “high-pertension” may resort to traditional remedies for the latter that can increase blood pressure. “High-pertension” treat- ments include the use of salty and pickled foods that can exacerbate blood pressure problems.
African Americans may also believe that “high-pertension” can be controlled through these dietary changes and changes in stress levels (Schlomann and Schmitke, 2007), leading to the erroneous conclusion that they no longer require their medication for treatment of CVD.
The explanatory model is an ideal tool for determining patients’ perceptions of their condi- tions, their expectations regarding treatment or nontreatment, and their likely responses to proposed medication and dietary treatment. As such, the explanatory model becomes a signifi cant tool for overcoming barriers to effective treatment produced by different conceptualizations of disease and illness.
CULTURE AND HEALTH
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implemented. Consensus is achieved through negotiation between explanatory models, but noncompliance is the likely result when the provider’s explanatory model is too discrepant for the patient, and the gap between them is not effectively bridged in the clinical consulta- tion. The provider needs to work with the patient’s explanatory model, even if the provider considers it wrong, because it represents how the patient understands the situation.
In summary, the health beliefs and explanatory models provide complementary per- spectives for understanding the relationship of an individual to a malady and that person’s likely responses to the condition and proposed treatment. The health beliefs model provides a focus on the broader societal factors affecting exposure to causes as well as preventive messages and information about relevant health resources that affect care-seeking behaviors. The explanatory model provides a focus on the immediate context of treatment, the factors affecting the likelihood that the patient will do what the doctor prescribes. Together they provide an understanding of the sociocultural factors affecting exposure and treatment.
CHAPTER SUMMARY
Distinguishing the disease, illness, and sickness concepts provides a focus on the bio- logical, personal, and social dimensions of health maladies. Responses to these mala- dies involve learned patterns of thought and behavior acquired through socialization and cultural patterning of expression and responses to conditions. These infl uences must be recognized for accurate assessment and treatment of conditions because they affect the importance of symptoms and their disclosure to providers. Patients’ perspec- tives on their malady and intended responses to treatment are important because they determine whether they follow medical advice. Acquiring the patient’s perspective facilitates diagnosis and follow-up by ensuring that the physician acquires full access to the patient’s knowledge of his or her condition. Explanatory models reveal their per- ceptions and anticipated behaviors and can establish the need for negotiation between different views. A major challenge to medicine is compliance; understanding patients’
beliefs and expectations regarding maladies helps gauge patients’ intended compliance, permitting communication and negotiation to achieve successful treatment. The next chapter introduces the foundations for achieving such cultural understandings.
KEY TERMS
Biopsychosocial model Constructivist perspective Contributory factors or cause Disease
Double-blind clinical trial Epidemiology
Explanatory model Health beliefs model Illness
Malady
Meaning
Necessary cause Nosology
Remote distal cause Sickness
Sick role
Sociogenic diseases Somatoform disorders Suffi cient cause
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SELF-ASSESSMENT 2.1. DISEASE, ILLNESS, AND SICK-ROLE EXPERIENCES
What diseases are most prevalent in your ethnic or social group?
Why are these diseases the most prevalent in your group?
Is there a genetic basis, or are these diseases a function of cultural lifestyle and behav- iors? Relationships with other groups?
How are these diseases viewed within your culture?
Is there a moral evaluation associated with them?
Have you ever been ill but unable to fi nd a medical explanation for your condition?
Have you ever had illnesses that physicians did not accept as real?
What are your personal attitudes toward the sick role?
Which of the following behaviors do you feel are appropriate for a sick person?
Withdrawal Complaining Crying Moaning Anger Irritability Pain medication Silent suffering
Missing work or school
Are there typical attitudes toward the sick role that are part of your family traditions?
Are there typical attitudes toward the sick role that are part of your culture?
Subculture?
What sick-role behaviors do you tend to adopt when you are ill?
How does being sick affect your personality?
When you are ill, do you want frequent visits from family and friends? Or would you prefer to be left alone?
When you are sick, do you expect to take care of yourself, or do you expect others to care for you?
What expectations do you have of family members when you are sick? Are they dif- ferent for your mother versus your father? Brothers versus sisters? Sons versus daugh- ters? Your spouse?
Are there people you know who appear to use the sick role excessively? How do you respond to them?
Do you feel that some illnesses and diseases have a moral or ethical component?
Which ones, and why?
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Are there diseases or illness for which people deserve our compassion, understand- ing, and assistance?
Are there diseases or illness for which people deserve to be sick?
Are there some diseases that have a moral implication in a patient’s responsibility for his or her condition? Does this affect how he or she is treated?
How do your sick-role behaviors and attitudes refl ect your cultural and social background?
How do you obtain your medical services? Do you have a prepaid health plan (e.g., an HMO)? How does that affect your willingness to seek out health services?
ADDITIONAL RESOURCES
Book
Royer, A. 1998. Life with chronic illness: Social and psychological dimensions. Westport, Conn./London: Praeger.
Journal
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine.
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