Caring for Patients in a Culturally Diverse Society

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Chapter 27

Caring for Patients in a Culturally Diverse Society

What the scalpel is to the surgeon, words are to the clinician. … [T]he conversation between doctor and patient is the heart of the practice of medicine.

Philip A. Tumulty, MD (1912–1989)

The cultural aspects of physical diagnosis and medicine are becoming increasingly important. By the middle of the twenty-first century, the majority of the population in the United States will no longer be white. It is imperative that all health care professionals understand the dimensions and complexities of caring for individuals of culturally diverse backgrounds in the United States. Equally important is the provider’s knowledge of the cultural and socioeconomic factors that affect the patient’s access to and use of health care resources. When treating recent immigrants, clinicians must be aware that their attitudes toward illness and treatment may be very different from those of the indigenous population. Second-generation immigrants may have yet a different appreciation.

The United States is home to one of the most ethnically and culturally heterogeneous populations in the world. There are more than 100 ethnic groups and 400 tribes of Native Americans in the United States, each with diverse practices and beliefs. This chapter provides some relevant issues of cultural diversity in health care and is intended to sensitize the health care provider to the effect of cultural diversity on health care delivery. This chapter is not comprehensive because not all groups are represented; however, no culture was intentionally omitted. The chapter is divided into two main sections: (1) a discussion of some general considerations in delivery of health care in a multicultural society and (2) selected cross-cultural perspectives.

The names used to identify various groups change with time. Within a cultural group, there are variations as to how its members identify themselves and what name they prefer. The names of cultural groups often grow out of ethnic and ideologic movements.

The examples of health care practices in this chapter illustrate traditional cultural differences. However, not all patients of a certain group hold that group’s traditional beliefs. Many patients who are now second- or third-generation Americans may not follow these practices at all but may know of them from parents or grandparents. Caution should also be taken to avoid stereotyping the patient by race, lifestyle, cultural or religious backgrounds, economic status, or level of education; this is detrimental to establishing a solid doctor-patient relationship. The health care provider must recognize that there is also great variability within cultures.

This chapter is intended not to stereotype or label any particular group but rather to teach the health care provider how to recognize common cultural characteristics to better understand the needs of his or her patients. Cultural competence is the understanding of the behaviors, policies, skills, health-related beliefs, communication patterns, and attitudes of our culturally diverse society to lessen the gap between the health care provider and the patient.

General Considerations

According to the 2010 census, 308.7 million people resided in the United States on April 1, 2010—an increase of 27.3 million people, or 9.7%, between 2000 and 2010. The vast majority of the growth in the total population came from increases in those who reported their race or races as something other than white alone and those who reported their ethnicity as Hispanic or Latino.

The definition of race categories for the 2010 Census was as follows:

“White” individuals are people whose origins are in any of the original peoples of Europe, the Middle East, or North Africa. This includes individuals who indicated their race or races as “white” or their original nationality as English, Italian, French, Dutch, Scottish-Irish, Scottish, Irish, Swedish, Norwegian, Spanish, German, Italian, Polish, Lebanese, Near Easterner, or Arab.

“Hispanic/Latino” individuals are from Cuba, Mexico, Puerto Rico, South or Central American, or other Spanish culture or origin regardless of race.

“Black or African American” refers to a person having origins in any of the black racial groups of Africa. It includes people who indicated their race or races as “black, African American, or Negro” or reported entries such as African American, Kenyan, Nigerian, or Haitian.

“American Indian or Alaska Native” refers to a person having origins in any of the original peoples of North and South America (including Central America) and maintaining tribal affiliation or community attachment. This category includes people who indicated their race or races as “American Indian or Alaska Native” or reported their enrolled or principal tribe, such as Navajo, Blackfeet, Inupiat, Yup’ik, or Central American Indian groups or South American Indian groups.

“Asian” refers to a person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent, including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. It includes people who indicated their race or races as “Asian” or reported entries such as “Asian Indian,” “Chinese,” “Filipino,” “Korean,” “Japanese,” “Vietnamese,” and “other Asian” or provided other detailed Asian responses.

“Native Hawaiian or Other Pacific Islander” refers to a person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. It includes people who indicated their race or races as “Pacific Islander” or reported entries such as “Native Hawaiian,” “Guamanian or Chamorro,” “Samoan,” and “other Pacific Islander” or provided other detailed Pacific Islander responses.

More than half of the growth in the total population of the United States between 2000 and 2010 was due to the increase in the Hispanic population. In 2010, there were 50.5 million Hispanics in the United States, composing 16% of the total population. Between 2000 and 2010, the Hispanic population grew by 43%—rising from 35.3 million in 2000, when this group made up 13% of the total population. The Hispanic population increased by 15.2 million between 2000 and 2010, accounting for more than half of the 27.3 million increase in the total population of the United States.

The non-Hispanic population grew at a relatively slower pace during the decade, at approximately 5%. Within the non-Hispanic population, the number of people who reported their race as white alone grew even more slowly between 2000 and 2010 (1%). Although the non-Hispanic White alone population increased numerically from 194.6 million to 196.8 million during the 10-year period, its proportion of the total population declined from 69% to 64%.

The black or African-American alone population was 38.9 million and represented 13% of the total population. There were 2.9 million respondents who indicated American Indian and Alaska Native alone (0.9%). Approximately 14.7 million (approximately 5% of all respondents) identified their race as Asian alone. The smallest major race group was Native Hawaiian and Other Pacific Islander alone (0.5 million) and represented 0.2% of the total population.

The remainder of respondents who reported only one race—19.1 million (6% of all respondents)—were classified as “some other race” alone.

The Asian population grew faster than any other major race group between 2000 and 2010 (43.3%). The Asian alone population had the second-largest numeric change (4.4 million), growing from 10.2 million in 2000 to 14.7 million in 2010. The Asian alone population gained the most in share of the total population, moving up from approximately 4% in 2000 to approximately 5% in 2010.

Although the Black alone population had the third-largest numeric increase in population size over the decade (4.3 million), behind the White alone and Asian alone populations, it grew more slowly than most other major race groups. In fact, the black alone population exhibited the smallest percentage growth outside of the white alone population, increasing 12% between 2000 and 2010.

Of the 308.7 million people, 223.6 million (72%) were white, 38.9 million (13%) were African American or black, 14.7 million (5%) were Asian, 2.9 million (0.9%) were Native Americans (American Indian, Inuit and Inupiat, and Aleut), 500,000 (0.2%) were Native Hawaiian and other Pacific Islanders.

Language can be a significant barrier to good health care. According to the 2000 census, there are more than 15 million people in the United States who have “limited English proficiency.”1

More than 5% of the populations of California, New York, Texas, New Mexico, and Hawaii have limited English-language skills.

Race, Culture, and Ethnicity

Race, as defined by Merriam-Websters Collegiate Dictionary, tenth edition, is a “class or kind of people unified by community of interests, habits, or inherited physical characteristics.” The term culture has a broad meaning; it refers to the unifying beliefs of any group of people of similar religion, values, attitudes, ritual practices, family structure, language, or mode of social organization. Culture provides values that are shared by members of a specific society or a social group within a society. Culture socializes its members on how to perceive the world, how to behave in the world, and how to experience the world emotionally. Elements that represent cultural values and notions include language, social or familial roles, and beliefs about the universe, the nature of good and evil, appropriate dress, eating and hygienic habits, manners, and food. Culture pervades lives and shapes human identity. All personal experiences and norms are perceived through the culture from which they emerge. It shapes human perception of reality and influences societal forms of conduct. Different cultures reinforce different behaviors; what is acceptable in one culture may be considered deviant in another.

Cultural values determine, in part, how a patient should behave. This includes the types of acceptable treatment, type of follow-up permitted, and who will make the decisions. From the medical point of view prevalent in the United States, the clinician and the patient make the decisions, but when a patient’s family exerts great influence, the situation can be very different. In some traditional cultures, the family takes over this role for the patient. Authority figures such as parents or grandparents often predominate. For example, in the case of Romany (“Gypsy”) patients, the primary decision-maker may not even be a relative. Among Orthodox Jewish patients, a medical decision may be made only after consultation with a rabbi. Among the Amish, the entire community may play a role in the decision-making.

Ethnicity is a cultural group’s sense of identification associated with the group’s common social and cultural heritage. The Harvard Encyclopedia of American Ethnic Groups defines ethnicity as “a common geographical origin, language, religious faith, and cultural ties (e.g., shared traditions, values, symbols, literature, music, and food preferences).”

Disease, Illness, and Health

The terms disease and illness are often used interchangeably. Medical sociologists and cultural anthropologists, however, make a distinction. The word disease refers to a disorder in which there is a change from normal in the body’s structure or function, involving one or more organs of the body. Illness is the subjective distress felt by the patient and by those close to the patient, rather than the actual state of ill health. The patient’s culture often determines how the patient interprets, explains, responds to, and deals with a disease. It also influences when a patient will seek health care decisions and from whom. Members of some cultures try to “normalize” their symptoms, maintaining that symptoms in a certain age group are not abnormal. Affected members might say that they have experienced the symptoms before and that therefore the symptoms are normal for them. Other cultures dictate immediate care even if symptoms are minimal. According to some cultures, to be ill is a punishment or curse, whereas according to others, to be ill is to be weak, irresponsible, or unmasculine. For many patients in the United States, the clinician is only one of many health care providers and often not the first. Some patients are likely to consult a healer from their own culture before seeking consultation from a Western-trained clinician. Two patients from different cultures may react differently to the same disease or symptoms. Thus, treating illness, rather than treating disease, requires the health care provider to have not only a broad understanding of medicine but also an understanding of the patient’s cultural background.

Health, as defined by Merriam-Webster’s Collegiate Dictionary, 11th edition, is “the condition of being sound in body, mind, and spirit.” It is often defined more abstractly as the “absence of disease.” In some cultures, health is viewed as the freedom from evil. Other cultures regard health as day and illness as night. By extrapolation, health reflects light and clean, and illness reflects dark and dirty. These depictions form the basis of the beliefs of many cultures, which are discussed later in this chapter.

Culture and Health

It is crucial for any health care provider to have an appreciation for cross-cultural family values, language, norms, religion, and political ideology. An estimated 80% to 90% of all self-recognized episodes of illness are managed exclusively outside a formal health care system. Traditional healers, mediums, self-help groups, and religious practitioners provide a substantial proportion of this health care.

Within the United States, there are many culturally distinct groups. Even within these groups, there are many variables such as educational achievement, socioeconomic class, generational status, and political relationship between the country of origin and the United States. All these factors contribute to establishing the dynamic reality of an ethnic group. Being in a low socioeconomic bracket appears to be a strong predictor that ethnicity will influence the behavior of such patients, regardless of whether they are newly arrived or native born. The following factors are other predictors of behavioral ethnicity:

Newly arrived immigrants often experience prejudice; the toll on their psyche may be a heavy one. But cultural change is not limited merely to immigration. Moving around in the same country or changing professions may also result in culture shock. The new culture may be viewed as unempathetic, cruel, and critical. The newcomer may experience frustration, irritability, fatigue, loss of flexibility, and an inability to communicate feelings to others. Distrust, paranoid tendencies, depression, anxiety, and physical and psychosomatic illnesses may develop. It is therefore necessary to include a patient’s and family’s immigrational and migrational history in the evaluation of the patient because the family is the carrier of ethnic traits and identity.

Cross-cultural marriages can offer the best and worst of both worlds. The reconciliation of different norms and traditions may provide an enriching experience, but a clash of different cultural traits may lead to strained relations among spouses and families.

The influence of ethnicity and culture on health and health-belief practices has long been recognized as a result of the presence of racially related diseases and syndromes, as well as societal predispositions to illness. It is very important to inquire about patients’ perceptions of their symptoms and illness. To understand better the cultural influences on a patients’ medical problem, Lipkin and colleagues (1995) suggested several questions for eliciting patients’ explanations for their symptoms or health-belief practices:

The answers to these questions provide insight into the hopes, aspirations, and fears of the patient.

Genetic Diseases

The simultaneous manifestation of two or more forms or alleles of a gene in a population is a genetic polymorphism. Certain genetic polymorphic states, such as blood groups, are strongly associated with disease. As early as 1953, an association of blood group A with gastric carcinoma was recognized. The causal relationship of hemoglobin S to sickle cell anemia is well known.

There are many genetic diseases. Some very common ones are described here.

Middle Easterners, both Arab and non-Arab, are among the populations most affected by genetic disease. The common cultural practice of consanguinity accounts for as many as 25% to 60% of marriages in some countries and has led to epidemic levels of genetic disease. Beta thalassemia is one of the most common genetic diseases in the Middle East. More than 16 million people are unsuspecting carriers for this serious blood disorder, which causes a lifetime of chronic illness, suffering, and an early death. It is characterized by ineffective erythropoiesis that leads to severe anemia, fever, hyperuricemia, and skeletal deformities. The association of these disorders with Mediterranean background has been long established. The human leukocyte antigen gene complex and the many diseases associated with it continue to receive attention. Table 27-1 summarizes some specific diseases on the basis of geographic distribution and ethnic populations.

Table 27–1

Geographic and Ethnic Distributions of Specific Diseases

Specific Disease Highest Incidence
Cancer of the skin Eastern Australia
Cancer of the cheek Southern India, New Guinea
Cancer of the nasopharynx Southeast Asia, Kenya
Cancer of the esophagus Northern France (Brittany)
South Africa
Eastern Zimbabwe
Western Kenya
East of the Caspian Sea
Cancer of the stomach Japan
Korea
Eastern Finland
Mountain region of Colombia
Eastern Zaire
Southwest Uganda
Cancer of the colon North America
Western Europe
Cancer of the liver Sub-Saharan Africa
Burkitt’s lymphoma Africa (10 degrees north and south of equator)
Appendicitis North America
South America
Europe
Diverticular disease North America
Western Europe
Australia
New Zealand
Hemorrhoids North America
South America
Europe
Cholelithiasis Southwestern United States
Sweden
Stenosing duodenal ulcer Southern India
Eastern Zaire
Ischemic heart disease North America
South America
Europe
Finland
Hypertension Japan
Taiwan
Venous thrombosis North America
South America
Europe
Diabetes North America
Urinary bladder stones North America
South America
Europe
Multiple sclerosis Rural Thailand
Rosacea Northern United States
Northern Europe
Vogt-Koyanagi-Harada syndrome Great Britain, especially Scotland
Takayasu’s disease Japan
Italy
Lactase deficiency Japan
Choroideremia Greece
Jewish people
African Americans
Thailand
Eskimos
Japan
Abetalipoproteinemia Northern Finland
Glycosphingolipidoses
Gaucher’s disease
Niemann-Pick disease
Tay-Sachs disease
Ashkenazi Jews
Familial Mediterranean fever Ashkenazi Jews
Sephardic Jews
Armenians

Familial Mediterranean fever (FMF) is an inherited condition that causes episodic attacks of fever and painful inflammation of the abdomen, chest, and joints. People with FMF may also develop a rash during these attacks. The attacks last for 1 to 3 days and can vary in severity. Between attacks, the person typically feels normal. These symptom-free periods can last for days or even years. FMF is most common among ethnic groups from the Mediterranean region, notably people of Armenian, Arab, Turkish, Iraqi Jewish, and North African Jewish ancestry. One in every 200 to 1000 people in these groups is affected by the disease, and carrier rates in some populations have been estimated as high as 1 in 5. Cases of FMF have also been found in other populations, including Italians, Greeks, Spaniards, Cypriots, and less commonly, Northern Europeans and Japanese.

Cystic fibrosis (CF) is a genetic condition characterized by the production of abnormally thick, sticky mucus, particularly in the lungs and digestive system. CF is a chronic condition that worsens over time.

According to the National Institutes of Health, CF is the most common deadly inherited condition among white people in the United States. Disease-causing mutations in the CFTR gene are more common in some ethnic populations than others:

Ethnic Group Carrier Rate Affected Rate
French Canadian 1 in 16 1 in 900
Caucasian 1 in 28 1 in 3000
Ashkenazi Jewish 1 in 28 1 in 3000
Hispanic 1 in 46 1 in 8300
African American 1 in 66 1 in 17,000
Asian 1 in 87 1 in 30,000

Phenylalanine hydroxylase deficiency, or phenylketonuria, is a treatable inherited disease in which the body cannot properly process the amino acid phenylalanine because of a deficient enzyme called phenylalanine hydroxylase. If severe forms of the disease go untreated, the buildup of phenylalanine can be toxic to the brain, causing impaired development and leading to severe and irreversible mental disability. If treated early and consistently, however, people with phenylalanine hydroxylase deficiency can lead completely normal lives.

Since the mid-1960s, it has been standard for hospitals in North America to screen newborns for phenylalanine hydroxylase deficiency using a drop of blood obtained from a heel prick. This is now a routine practice in most developed countries.

The frequency of carriers and affected individuals in select populations is listed here.

Ethnic Group Carrier Rate Affected Rate
Turkish 1 in 26 1 in 2600
Irish 1 in 33 1 in 4500
Caucasian American 1 in 50 1 in 10,000
East Asian 1 in 51 1 in 10,000
Finnish 1 in 200 1 in 160,000
Japanese 1 in 200 1 in 160,000
Ashkenazi Jewish 1 in 225 1 in 200,000

Tay-Sachs disease is the most common and severe form of hexosaminidase A deficiency. Tay-Sachs disease is a progressive condition that results in the gradual loss of movement and mental function. It is typically fatal early in childhood. The symptoms of Tay-Sachs disease usually appear in infants between 3 and 6 months of age. Initially, infants lose the ability to turn over, sit, or crawl. They also become less attentive and develop an exaggerated startle response to loud noise. As the disease progresses and nerve cells further degenerate, infants with Tay-Sachs develop seizures, vision and hearing loss, mental disability, and eventually become paralyzed. Death usually occurs by the age of 4.

Tay-Sachs disease is most common among specific ethnic populations, particularly Ashkenazi Jews from Central and Eastern Europe, certain French-Canadian communities in Quebec, Amish populations in Pennsylvania, and Louisiana Cajuns. Tay-Sachs disease is found in people of all ethnicities, although the risk outside of the ethnic groups mentioned previously is much lower. Roughly 1 in 30 Ashkenazi Jews is a carrier of Tay-Sachs, compared with 1 in 300 for the non-Jewish Caucasian population. Since 1970, an organized campaign in the Jewish community to educate potential parents about Tay-Sachs and test them for mutations causing this disease has dramatically lowered the number of children affected by the disease. Because of these successful screening programs, today the majority of children born in the United States with Tay-Sachs disease do not have an Ashkenazi Jewish background.

Traditional Medical Beliefs

People interpret traditional medical beliefs about the body’s shape and size, inner structure, and functions in terms of their cultural background. To illustrate various cultural beliefs about body functions, consider that patients often ascribe their symptoms to blood that is “too thin,” “too thick,” “too little,” or “too slow.” Blood can be used as an index of an emotional state (blushing); a personality type (“cold-blooded” or “hot-blooded”); a kinship (“blood is thicker than water”); a diet (“thin blood”); or a social relationship (“bad blood between people”). “Bad blood” is also frequently used to refer to syphilis.

As another example of the cultural beliefs about blood, consider views about menstruation. A study in 1977 by Snow and Johnson evaluated the views of inner-city women in a public clinic in Michigan. Many of the 40 women interviewed felt that menstruation was a method of ridding the body of impurities that could cause illness or poison the body. Many of these women believed that when the uterus was “open” during menstrual flow, they were vulnerable to disease. They also believed that it was only at this time that a woman could become pregnant. At all other times in the menstrual cycle, the uterus was “closed,” and pregnancy was impossible. Another common fear among the women was that of impeded menstrual flow. They feared that stoppage might cause a backup of poison and hence a stroke, cancer, or sterility. This fear may be a reason why these women avoid the use of certain methods of contraception, such as intrauterine devices and diaphragms.

Another belief about menstruation was studied by Skultans (1970) in two groups of women from a small mining village in South Wales in the United Kingdom. One group of women felt that menstruation was a process by which the body “cleansed” itself; the longer the period or greater the blood loss, the better. These women regarded menstruation as normal and essential to a healthy life. In contrast, another group of women from the same mining town viewed menstruation as damaging to their overall health; they feared that the blood loss was threatening to their health and welcomed the thought of menopause.

Finally, Ngubane (1977) described the beliefs of South African Zulu women about menstruation. They felt that menstruating women had a “contagious pollution” that was deleterious to other living creatures and to the natural world. A man’s virility would be reduced if he had sexual relations with a menstruating woman. Crops would be ruined and cattle would die if menstrual blood came in contact with them. In some of these African communities, menstruating women are isolated from the community because of their “dangerous pollution.”

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