Rudolph's Pediatrics, 22nd Ed.

CHAPTER 15. Culture and Pediatric Practice

Sakena Abedin

The 2002 Institute of Medicine report “Unequal Treatment,” a report on disparities in health care, hypothesizes that unacknowledged sociocultural differences between patient and provider may lead to poor health outcomes. The report also suggests that providers must be educated about the care of diverse patients. This chapter focuses on one aspect of such diversity: culture.

Addressing cultural difference between patient and provider is one goal of the cultural competency programs that have proliferated in medical training and practice settings. In these programs, cultural difference between patient and provider is seen as a gap that must be bridged or crossed in the process of patient care. These programs, which have traditionally focused on the cultural attributes of various groups, raise a range of concerns. One concern is that in summarizing cultural attributes of groups, these courses present stereotypes, the use of which can actually be detrimental to patient care.^1-3 Another concern is that culture becomes “medicalized” or “pathologized,” a process that involves making value judgments about cultural aspects of certain groups.⁴ These critiques call for a different approach to thinking about culture and medicine, an approach that shapes the content of this chapter.

This chapter borrows heavily from the humanities and social sciences and covers 2 different but overlapping ways for thinking about culture and its relationship to the practice of medicine. The first makes use of the work of medical anthropologist Arthur Kleinman and his colleagues on the distinctions between illness and disease.^5,6 The second centers around Rita Charon’s work on narrative medicine.^7,8Accompanying the description of each framework are ways to apply them in practice. The chapter also includes a discussion of more traditional approaches to culture and medicine, by discussing the practice of co-sleeping. The chapter ends with a brief discussion of socioeconomic status and its relevance to medicine.

CULTURE, ILLNESS, AND DISEASE

A working definition of culture is necessary in order to consider the relationship between culture and the practice of medicine. Anthropologist Janelle Taylor suggests that within medicine, culture is defined, in ways that are too limiting, as “a static set of beliefs and ideas that only other people have.”⁹ The first step toward a broad and more inclusive definition of culture is to recognize that culture is not simply the beliefs and practices of groups of people; culture is the context in which individuals make sense of their experiences. The distinction between illness and disease is a useful one in understanding how culture, defined in this way, is relevant to medicine. Diseases, “abnormalities in the structure and function of body organs and systems,” are what physicians are trained to diagnose and treat.⁵ Illnesses, on the other hand, are what patients experience, and the experience of illness is shaped by culture, along with other factors. The relevance of culture to medicine is about more than quantifying beliefs and cataloging practices of groups of people; it is about understanding how culture shapes the ways that individual patients make sense of disease.

The second part of a more broad and inclusive definition of culture is countering the idea that culture is something that only “other” people have. “Other” here may mean people who are not physicians in general, but it may also mean poor, elderly, or ethnic minority patients; culture is often most visible in these cases. Vignettes from Kleinman and colleagues’ article on culture and medicine are useful in revealing how culture is relevant “to a greater or lesser degree in all clinical transactions.”⁵ Kleinman recounts the story of a 26-year-old Guatemalan woman who believed that her Crohn’s disease was the result of witchcraft by her fiancé’s sister. She did not share this belief with her physicians because of fear of ridicule; she also believed that her physicians had given up on her care. She became angry, withdrawn, and uncooperative. Once her concerns were raised and respectfully addressed by the medical team, who indicated that they did not share her ideas but had not given up on her care, her behavior changed and she cooperated with the treatment regimen. The article also recounts the story of a 38-year-old university professor who was diagnosed with angina but refused to accept the diagnosis and demanded instead the diagnosis of pulmonary embolus. Eventually, it was uncovered that the professor felt that a diagnosis of angina signified the end of an active lifestyle; discovering this misconception allowed his cardiologist to address the patient’s concerns and allowed the patient to accept his diagnosis. Culture shapes the experiences of all patients; it is up to the physician to address culture when it becomes relevant to the relationship between patient and physician.

Kleinman and colleagues offer a guide to eliciting patients’ explanatory models through direct questions (Table 15-1); an explanatory model is the sum of a patient’s ideas about an illness. The questions help the physician obtain a better understanding of how a patient views the physiologic disease processes affecting him or her. They are likely to be of use in the long-term care of a patient diagnosed with a chronic condition; understanding a patient’s explanatory model allows the physician to build a relationship that centers around the patient’s needs. These questions may be also useful in the process of diagnosis of a disease, in trying to get a better sense of the symptoms at play, or to better understand exactly what is at issue. Finally, they can also be of use in understanding the meaning that a particular intervention has for a patient.¹⁰

In primary care pediatrics, disease and illness are not always the issue. Issues that primary care physicians do address often, such as sleep, feeding, and developmental concerns, can also be better understood through the use of these questions. With some modification, the explanatory model questions can be used by the pediatrician interacting with the family of a patient (see Table 15-1). The questions can be used to understand a parent’s anxieties about a child’s problem or disease. They can also be used to assess the parent’s understanding of or particular interpretation of a child’s problem or disease or to understand a parent’s expectations regarding treatment or intervention. Finally, taken as a whole, the questions help to reveal the meaning that the problem or disease has taken on in the family of the patient. All of this information can be of use in the processes of diagnosis and treatment.

CULTURE AND NARRATIVE FRAMEWORKS

If the practice of medicine is about the process of identifying and treating problems, understanding the relevance of culture to medicine requires an understanding of the role of culture in physician-patient communication. This section explores a narrative approach to medicine and how it draws attention to the importance of culture in the communicative aspects of the doctor-patient relationship.

Table 15-1. Eliciting Explanatory Models

Source: Data from Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Ann Intern Med. 1978;88(2):251-258.

The narrative approach is based on the idea that medical practice is a series of narrative situations, interactions between doctors and patients, where each is engaged in trying to understand the narrative of the other. As Charon explains, “Physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings and be moved to act on the patient’s behalf.”⁷

As physicians interact and talk with patients, Charon writes, they are engaged in a process of interpretation:

As the physician listens to the patient, he or she follows the narrative thread of the story, imagines the situation of the teller (the biological, familial, cultural and existential situation), recognizes the multiple and often contradictory meanings of the words used and events described, and in some way enters into and is moved by the narrative world of the patient.⁷

Thinking about the interaction between doctor and patient as a process of interpretation makes clear the role of culture in this interaction. It also acknowledges the role of the “listener’s interior resources” in this process. In other words, in making meaning of a patient’s story, a physician calls upon his or her own previous experiences and cultural situation. Culture shapes more than the distinction between illness and disease; it shapes the very way that doctors and patients communicate with one another and understand each other’s stories.

For physicians to elicit, receive, and interpret their patient’s illness stories effectively requires a mindset that promotes listening to their story in a way that allows for attention to culture.^11-14 Similarly, attention is also necessary for speaking. In a study of conversations between doctors and patients, a linguistic anthropologist found that doctors tend to speak in the voice of medicine, using technical terms and distancing themselves from patients’ suffering. Patients, on the other hand, alternated between speaking in the voice of medicine, which they shared with their physicians, and speaking in the voice of the lifeworld.¹⁵ It is in the voice of the lifeworld that patients contextualize their concerns and bring their everyday life (including its cultural aspects) into the conversation. When patients speak in the voice of the lifeworld, physicians often ignore them or cut them off by reverting to the voice of medicine. A further study found that patient outcomes were worse when patients spoke in the voice of the lifeworld and were either ignored or blocked by their physicians.¹⁶ More humane and effective medical care was practiced when both doctor and patient engaged in the lifeworld, allowing more of the patient’s concerns to be voiced and addressed. Listening for the voice of the lifeworld and using language that encourages patients to speak their minds allows for opportunities to incorporate culture into the practice of medicine.

ADDRESSING CULTURE IN PEDIATRIC PRACTICE

In the process of practicing medicine, physicians gather cultural knowledge about groups of patients in the form of perceptions about the beliefs and practices of groups of people. This section addresses the sorts of cultural knowledge that physicians gather in practice and ways to make use of this knowledge in the care of individual patients.

Often-discussed examples of cultural practices in pediatrics are the practices of cosleeping and bedsharing. Bedsharing, wherein a parent and child share the same bed or sleeping area, is a subset of cosleeping, wherein parent and child sleep in the same room. A recent article in Pediatrics outlines the cultural and biological contributions to sleeping practices. With regard to sleeping arrangements, it states:

The norm for children in many cultures around the world is to sleep with adults or siblings, if not in the same bed or sleeping structure, then at least in the same room. Private bedrooms for children are the exception rather than the rule worldwide. Importantly, it is not only less industrialized societies that practice cosleeping but also highly technologically advanced and complex communities, of which the classic example is Japan.¹⁷

Numerous studies have examined the relationship between ethnicity and cosleeping, particularly in the inner city, and have found the practices of cosleeping and bedsharing to be widespread.^18,19 The most recent American Academy of Pediatrics’ policy statement on sleep positioning for infants cites evidence that cosleeping in the same room may reduce the risk of sudden infant death syndrome, and it highlights the potential risk of bedsharing.²⁰ If a pediatrician is working within a community where bedsharing is common, how can she or he most appropriately address the practice with parents?

Three general guidelines may be of use in such a situation. The first is to engage parents in conversation about the problem. Busy physicians tend to avoid issues that take time and involve uncertainty, and issues involving culture tend to be seen as having both of these characteristics.²¹ In a study of a resident primary care clinic, issues seen as cultural were also seen as being difficult to address; this led to the avoidance of conversations about issues like cosleeping.²² Beginning with an open-ended question such as “Where does the baby sleep?” is one way to engage parents in a discussion of the issues of cosleeping and bedsharing.

The second guideline is to avoid making assumptions when talking to parents. Physicians tend to make two sets of assumptions about practices that are seen as cultural.²² The first that culture is the only motivation behind such practices. The second is that any attempt to address these practices will be met with resistance. Avoiding these assumptions and asking parents directly about their practices and views provides the physician with information that can be useful in shaping conversations. Rather than assuming the reasons that parents choose co-sleeping or bedsharing, the physician can use nonjudgmental language to ask parents about their beliefs. The skills discussed previously (eliciting explanatory models, practicing mindfulness, and listening to the voice of the life-world) and in Chapter 3 are useful in this sort of conversation. Some parents may engage in bed-sharing because that is what they are used to; others may choose it because they feel that it is what is best for their child. These parents may be receptive to different types of information about the practice of bedsharing.

The third guideline is to value negotiation above compliance. Seeking compliance alone may lead to relationships with patients and families that are not open and honest. It is important to determine the parents’ preferences and priorities and to attempt to match those with physician’s goals and priorities in a mutually acceptable agreement.^10,23 In this case, the pediatrician’s role is to provide information about risks so that parents can make decisions about the practices of cosleeping and bedsharing. The pediatrician may wish to involve members of the extended family in the negotiation if they are actively involved in care of the child or provide social support to the parents. In addition, suggesting alternatives, such as use of a cosleeper or bassinet, is an important part of negotiation and the development of a mutually acceptable agreement between doctor and patient.

CULTURE AND SOCIAL CONTEXT

As important as culture are the social and economic factors that influence the care of patients. Attention to social and economic barriers to health care is particularly important because a focus solely on culture risks ignoring socioeconomic barriers to care (eg, poverty) allows socioeconomic barriers to be characterized as cultural barriers.²⁴

A complete analysis of the importance of socioeconomic status to medical care is beyond the scope of this chapter. An overview of the effects of socioeconomic status on health can be divided into two categories. The first is the effect of material reality of socioeconomic status on children’s and families’ access to health care: This includes issues such as health insurance, transportation, and health literacy. The second category is the direct effect of poverty and low socioeconomic status on child health and development. As this second category is addressed in Chapters 1 and 11, the focus here is on the first category. As with culture, the first step in addressing these issues as they arise in practice is to be aware of their existence. A useful aproach is to divide social concerns into 4 major domains: (1) social stress and support networks, (2) change in environment, (3) life control, and (4) literacy.²⁴ A list of questions, modified for pediatrics, can be found in Table 15-2. Table 15-3 provides helpful information about using an interpreter to ensure accurate communication with patients and families who are not proficient in the English language.

Table 15-2. Engaging Social Context: Sample Questions

Source: Modified from Green AR, Betancourt JR, Carrillo JE. Integrating social factors into cross-cultural medical education. Acad Med. 2002;77(3):193-197.

Table 15-3. Using an Interpreter