Keywords

What is the hardest thing you have ever done? One answer for many Arabs in America is “leaving my country,” but why did they leave? Reasons vary from fleeing war and death to poor life conditions and chasing the “American Dream”; were all their dreams of success and wealth come true.

To them, leaving their homeland means leaving behind their comfort zones, support systems, and their sense of belonging. Taking with them whatever is possible, but most important, their culture, stories, memories, and hope.

Arabs, similar to many other immigrants, are faced with the daunting task of creating their new lives after arriving in America; a life for themselves and generations to come. What makes this harder is that living the “American Dream” is not easy, being Muslim and Arab in America comes with its fair share of stereotypes and racism.

Arab Americans’ past experiences, current situation, and future fears hugely affect their health, especially regarding chronic illness such as diabetes.

Ethnic groups in the United States have a high prevalence of diabetes compared to the general population. Diabetes is twice as high among Hispanics (Weller et al., 1999) and African Americans as it is among non-Hispanic whites (Flegal et al., 1991). Diabetes among Arab Americans in Michigan is estimated to be two to three times higher than in the general US population (Jaber et al., 2004). Despite this high rate of diabetes, few studies have focused on diabetes among Arab Americans.

This book shows the relationships among immigration, culture, and health. Culture guides Arab Americans in understanding their changing world in general and their health specifically. This book aims to build a cultural belief model of diabetes, a chronic illness with high prevalence among Arab Americans compared to all other ethnic groups in the United States. In doing so, questions such as “Why did I get diabetes?” “Why me?” “What is the meaning of what I feel?” and “What is the treatment for diabetes?” will be answered. In addition, the book discusses the struggles of fasting Ramadan and the role of family support in providing care. The book will touch on some identity struggles as well as the notion of not feeling ‘safe, understood, or accepted’ and its relation to Arab American health. The book is a result of two years of ethnographic fieldwork in Dearborn, Michigan, which is the location of the largest Arab American enclave.

1.1 The Relationship Between Culture and Health

The anthropological study of illness dates back to the work of Rudolf Virchow in the 1880s (Trostle, 1986). However, medical anthropology as a named field of study began with Caudill (1953) chapter in Kroeber’s monumental edited volume, Anthropology Today. Since then, anthropologists have continued to contribute to epidemiological knowledge through studying illnesses across the world.

Kleinman's (1978) early work was a turning point in studying the relationship between culture and health. In his work, he recognized the importance of the relationship between culture and health. He called for the importance of developing a theoretical model that perceived the healthcare system as a culture system (Kleinman, 1978), with emphasizing that culture system should be looked at and understood in relation with healthcare, health, and illness (Kleinman, 1978).

Kleinman (1988) presented an important framework for examining illness across cultures with his work on the explanatory model of illness from the emic perspective. The model provides an analysis of how culture influences how people understand and address illness and the healing process (Kleinman, 1978). The model dose not only view the healthcare system as a culture system but also provides a systemic understanding of how the relationship works and functions. In addition, the model provides a framework that allows a cross-culture comparison (Kleinman, 1978). Kleinman (1978) argues that without such a framework, we cannot have a comprehensive outlook of the dynamic relationship between culture and health and its effect on people.

For Kleinman, healthcare system is cultural system that contains meanings, values and behaviors, this system is similar to any other cultural systems such as kinship (Kleinman, 1978). Healthcare systems try to understand the patient’s beliefs related to the causes of their illness, the way in which they understand their body, experience pain, explain symptoms, and understand and adhere to treatments (Kleinman, 1978).

Importantly, in his work, Kleinman differentiates between “disease” and “illness,” where disease is the Western medical explanation related to the “malfunctioning or maladaptation of biologic and psychophysiologic processes in the individual” (Kleinman et al., 1978, p. 141). In contrast, illness represents the “personal, interpersonal, and cultural reactions to disease or discomfort” (Kleinman et al., 1978, p. 141). For Kleinman, illness relates to the social and cultural context in which people perceive and navigate disease. This social and cultural context of illness encompasses psychological and sociological processes that effect the process of the disease’s development and management from the beginning to the healing stage (Kleinman, 1978).

Usually, illness experience begins when a person notices a change in their physical status; this change might be apparent or hidden—a feeling. Following this is their social network recognizing their illness. As family and community members recognize that this person has an illness, together they start the healing process, from taking treatment recommendations to seeking different treatments options. The chosen treatment options depend on the person, their family and community explanation of its causes and how it can be treated, which might include going to the hospital (Kleinman et al., 1978).

Kleinman (1978) framework provides an understanding of why Western medicine might not be effective in providing cure. Following the same previous logic related to the differences between diseases and illnesses, doctors diagnose and treat diseases, while the patient experiences illnesses. These two factors do not always correlate; people who have the same disease might have different illness experiences than others do. In addition, people can have an illness without having a disease, and people can have diseases but not experience illness. This does not imply that diseases can be treated in hospitals by using Western medicine and illnesses can be treated by traditional healers. As Kleinman (1978) pointed out, doctors might not cure a disease if the patient is not willing to agree on the treatment and comply.

How does all of this work and function within the healthcare system? According to Kleinman, most healthcare systems contain three “social arenas,” which he calls the popular arena, the professional arena, and the folk arena (Kleinman, 1978). In the popular arena, patients experience sickness within their social network, which includes family, friends, and community members. This arena plays a very important role in the patient’s healing because 70% to 90% of sickness is delt with within this domain in both Western and non-Western cultures (Kleinman, 1978). From the early stages of sickness, people express what they are feeling to the people around them, looking for solutions, remedies, and recommendations. The popular arena role is not limited, and it does not stop after seeking medical treatments; people’s evaluation of treatment efficiency, medicine management, and family care continue until reaching a cure. The professional arena contains the scientific Western medicine, as well as the “professionalized” traditional healing practices (Kleinman, 1978). This arena contains any interaction people have within the hospitals, clinics, or even within professionalized alternative medicine such as Chinese medicine. The folk arena contains the traditional healer and traditional healing practices that are not professionalized.

According to Kleinman (1978), in dealing with sickness, healthcare systems have the following six cultural adaptive tasks: (1) Patients learn culturally how to understand and navigate the illness. (2) Patients learn how to choose where and who will provide the care between the traditional and non-traditional medicine. (3) Patients learn how to manage the illness and express it in a way that is socially recognized. (4) Patients process the healing. (5) Patients learn the ways in which the sickness can be prevented. (6) Patients experience the way in which healing is reached and the possible treatment side effects or failure, as well as how patients navigate chronic illness and process the idea of death.

Based on the idea that healthcare systems are cultural systems that contain the three arenas, Kleinman suggested using the explanatory models of illnesses, which can be used in eliciting knowledge related to illnesses from doctors, patients, and family members. The model elicits five main domains: “etiology; onset of symptoms; pathophysiology; course of sickness (severity and type of sick role); and treatment” (Kleinman, 1978, p. 87). Kleinman emphasized that explanatory models are part of a “specific systems of knowledge and values centered in the different social sectors and subsectors of the healthcare system. Thus, they are historical and sociopolitical products” (Kleinman, 1978, p. 88).

To put the explanatory model of illness in practice, Kleinman et al. (1978) suggested working in two models: the patients’ model and the doctor’s model. For the patient’s model, healthcare professionals should ask the following question “[1] What do you think has caused your problem? [2] Why do you think it started when it did? [3] What do you think your sickness does to you? How does it work? [4] How severe is your sickness? Will it have a short or long course? [5] What kind of treatment do you think you should receive?” (Kleinman et al., 1978, p. 147). Kleinman and colleagues also suggested additional question to enhance the understanding of the cultural and psychosocial aspect of illness, which are: “[6] What are the most important results you hope to receive from this treatment? [7] What are the chief problems your sickness has caused for you? [8] What do you fear most about your sickness?” (Kleinman et al., 1978, p. 147). Regarding the doctor’s model, comparing the doctor’s model with that of the patients’ will be essential “in dealing with issues relating to conflicting beliefs and value systems” (Kleinman et al., 1978, p. 147).

The process does not end here, knowing the differences should move from the point of “knowledge” to a real and dynamic “practice.” Kleinman emphasized that clinicians should review patients’ models and compare them with doctors’ models. The goal is to close the gap between both, either by educating the patient and giving them the opportunity to ask questions, or by negotiating the differences to reach a middle ground, especially regarding differences in treatments that might affect the healing process (Kleinman et al., 1978).

Kleinman et al. (1978) generated a set of hypotheses that he recommended clinicians and anthropologists test to assess the limitation of the current healthcare systems and to define the needed interventions. These hypotheses follow the fundamental assumption that doctors can treat diseases in hospitals while only folk healers can treat illness. Kleinman et al. (1978) assume that patient care satisfaction will be less if disease is treated and not the illness. Additionally, this framework assumes that healthcare professionals can be trained to treat both illness and diseases, which will result in patient satisfaction and healing processes. Their hypotheses emphasize the importance of teaching “clinical science” that accompanies both social science and biomedical science to enhance the training and understanding of health professionals to address illness. In addition, they assume that healthcare systems are mostly built based on the biomedical explanation of diseases without including the idea of illness, which creates difficulties and limitations in providing healthcare.

Kleinman et al. (1978) proposed that social science should be developed as “a clinical discipline.” They suggested that every medical school and teaching hospital should have a department of clinical social science. The department should include physicians, anthropologists, and sociologists who will provide training for students. The training should be based on learning theoretical knowledge based on cases, and then applying the learned techniques on real-life clinical settings that involve patients. In addition, such a department can aid in developing the field by conducting more research related to culture and healthcare.

Kleinman (1978) laid his important work, and many tools were developed to elicit patient models of illnesses in clinical settings. Weiss (1997) developed the Explanatory Model of Illness Catalogue (EMIC). This catalogue contains a set of semi-structured interview questions to build the patient illness explanatory model by eliciting their experiences, causes, and treatment-seeking behaviors as well as general beliefs related to the illness. Lloyd et al. (1998) developed the Short Explanatory Model Interview (SEMI) to be used for patients with mental disorders. The interview contained a set of questions addressing the patient’s cultural background, the symptoms, and their treatment-seeking behaviors. Broadbent et al. (2006) developed the Brief Illness Perception Questionnaire (Brief IPQ), which contained 9 items to evaluate the patient’s illness perceptions.

Explanatory models’ tools were developed by using both qualitative and quantitative approaches. Kleinman (1988) argues that evaluating “suffering requires more than the addition of a few questions to a self-report form or a standardized interview” (p. 28). He called for the use for ethnographic, biographic, historic, and psychotherapy methods in collecting data related to suffering from illnesses. According to Kleinman (1988), “these methods enable us to grasp, behind the simple sounds of bodily pain and psychiatric symptoms” (p. 28), which can enhance our understanding of the experience of having an illness.

Although quantitative explanatory tools can be effective in electing the patient’s beliefs model, qualitative-based tools arguably “would provide richer data and a better understanding of illness representations and experiences” (Dinos et al., 2017, p. 109). In addition, it is important to consider that explanatory models based on quantitative approaches consume less time compared to qualitative-based models, which make them easier and faster in application (Dinos et al., 2017).

In addition to the models’ specifications related to the method type, and in relation to the information depth and application time, Dinos et al. (2017) highlighted in their research that, “Explanatory models are not static constructs. Rather, they are fluid, and they can be influenced by a number of factors, including the type of clinician/interviewer and the questions asked, the symptoms of the illness, and the patient’s outlook/mood and migration history” (Dinos et al., 2017, p. 112). Those factors can alter and change during the course of illness. Due to this nature, Dinos et al. (2017) called for the importance of reassessing the model and altering the process throughout the healing experience.

With the development of Kleinman’s explanatory model of illnesses and the methodological development of the research tools, a massive effort has been made in anthropology to study the cultural factors involved in the causes and consequences of many illnesses in many social groups. Examples include diarrhea among rural Mexicans (Ryan & Martínez, 1996), mental illness among West Africans (Edgerton, 1966), Ebola among Northern Ugandans (Hewlett & Amola, 2003), AIDS among Africans (Green & Ruark, 2011), breast cancer among Latinos (Chavez et al., 1995), hypertension among the Ojibway (Garro, 1988), hypoglycemia in the United States (Hunt et al., 1990), and diabetes among Latinos (Weller et al., 1999).

This book includes additional seven chapters. The second chapter will focus on discussing diabetes from a cross-cultural perspective. The third chapter offers a comprehensive review of the history of Muslims in America, and the fourth chapter will be dedicated to the research setting and methods. In the fifth chapter, I will discuss the results from the first stage of building the cultural belief model of diabetes. The sixth chapter will show the results of the consensus analysis. The seventh chapter discusses the possible application of the Arab American cultural belief model. The eighth chapter will be dedicated for the discussion and the book’s conclusion.