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Culture as a Social Determinant of Health

In his keynote address, James Knibb-Lamouche, director of research for Blue Quills First Nations College, highlighted several observations and recommendations made in the paper he was commissioned to write for the workshop. (Appendix A provides the full text of the paper.) The observations and recommendations were his alone, but they established the context for many later discussions at the workshop.

THE BROAD DETERMINANTS OF HEALTH

The medical model of health has had fantastic successes, Knibb-Lamouche began. It has produced new diagnostic technologies, medications, and health care delivery systems. The reductionist approach at the center of the model has been a foundational methodology for gaining new knowledge.

But all systems have limits. The proliferation of technologies and medications has run up against cost limits in all developed nations. Parts of communities have access to these resources, but other parts do not, which increases inequity. Also, the reductionist approach has been a victim of its own success. Relying on this approach alone reduces the ability of the system to respond to chronic diseases such as diabetes, cancer, and heart disease, which disproportionately affect indigenous and minority communities. A reductionist framework also can lead to the denigration of other forms of knowledge, including the indigenous knowledge present in communities that can be used to address these problems.

Many factors affect health, including income, social support, educa-



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2 Culture as a Social Determinant of Health In his keynote address, James Knibb-Lamouche, director of research for Blue Quills First Nations College, highlighted several observations and recommendations made in the paper he was commissioned to write for the workshop. (Appendix A provides the full text of the paper.) The observa- tions and recommendations were his alone, but they established the context for many later discussions at the workshop. The Broad Determinants of Health The medical model of health has had fantastic successes, Knibb- Lamouche began. It has produced new diagnostic technologies, medica- tions, and health care delivery systems. The reductionist approach at the center of the model has been a foundational methodology for gaining new knowledge. But all systems have limits. The proliferation of technologies and medi- cations has run up against cost limits in all developed nations. Parts of communities have access to these resources, but other parts do not, which increases inequity. Also, the reductionist approach has been a victim of its own success. Relying on this approach alone reduces the ability of the sys- tem to respond to chronic diseases such as diabetes, cancer, and heart dis- ease, which disproportionately affect indigenous and minority communities. A reductionist framework also can lead to the denigration of other forms of knowledge, including the indigenous knowledge present in communities that can be used to address these problems. Many factors affect health, including income, social support, educa- 5

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6 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES tion, and social and physical environments. Collectively, such factors are often referred to as the social determinants of health, but Knibb-Lamouche advocated taking an even wider perspective on these factors. In indigenous communities, the broader determinants of health include cultural continu- ity, responses to colonialism, and responses to the “new colonialism”— globalization—which he described as seeking reduced diversity because it is cheaper to provide goods and services to a uniform market. These broader determinants also include the relationship of indigenous people to their ter- ritories and former territories. The forced migration of indigenous peoples away from their territories has been a major contributor to the poverty that afflicts many of these communities. Self-determination and control over ter- ritories are politically charged topics, he acknowledged, “but any serious attempts to deal with the amelioration of health are going to have to face them at one point or another.” Indigenous Cultures The importance of culture can be masked by the tremendous diversity of indigenous peoples (see Figure 2-1). Canada has more than 600 different First Nations. The United States has more than 1,000. These groups have different languages, different cultural practices, and different histories. As a percentage of the total population Alone or in combination Percent 8.0 or more 3.0 to 7.9 1.5 to 2.9 Less than 1.5 American Indian/Alaska Native Areas U.S. percent 1.7 FIGURE 2-1 The representation of American Indians and Alaska Natives in the U.S. population varies geographically. SOURCE: U.S. Census Bureau, 2010 Census Redistricting Data (Public Law 94- 171) Summary File, Table P1.

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CULTURE AS A SOCIAL DETERMINANT OF HEALTH 7 Despite their variety, two values that are common among these groups are balance and respect, said Knibb-Lamouche. These attributes are not something inherent within each person. Rather, they are inherent within the systems of which individuals are a part, including communities, families, jobs, and societies. All of these systems need balance and respect to function properly and to provide individuals with the means to achieve good health. Similarly, when systems are unbalanced, they can produce ill health. “It is a different angle to be taking when you are looking at the provision of health,” said Knibb-Lamouche. Good health is not something “that is given to you or that you pay for or that you can get from somebody else. It is something that must be gained and fought for within and of yourself, with the assistance of others.” Patients cannot be treated in isolation. Their condition derives from the culture of which they are part and the culture of the institution from which they are seeking help. Thus, patient-centered care cannot be cultur- ally neutral. The way the health care system provides services is based on cultural assumptions that have been passed down over the generations. “Just because you do not pass on the information by singing and songs and storytelling does not mean that you do not have a culture,” Knibb- Lamouche explained. If health care institutions are not attuned to the culture of their patients, outcomes for both patients and institutions can be negative. If patients are noncompliant or reluctant to visit health facilities, they can become alien- ated from the health care system, and health care providers can become demoralized. These feelings of alienation and powerlessness have a trickle- down effect throughout the entire system. Knibb-Lamouche mentioned unpublished results from an Alberta phy- sician who talked with the elders and healers from his community. Although the health care system in the Alberta community is completely up to West- ern standards, the physician reported that community members tend not to use it. They think of the hospital as a place where people go to die. “There is something seriously and significantly wrong with a system that can so completely fail one group of people in a society,” said Knibb-Lamouche. Colonialism destroyed parts of the culture of indigenous groups. Resi- dential schools and missionization are examples of culturally destructive acts that in some cases were intended to be destructive. “The saying in Canada around residential schools was that they must kill the Indian in order to save the man,” said Knibb-Lamouche.1 In other cases, indigenous cultures were simply ignored because they were “different,” leading to the condition of cultural incapacity. Sometimes, health care providers hid 1  The original quote, written by Richard H. Pratt in 1892, is “Kill the Indian in him, and save the man.”

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8 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES behind the idea that culture does not matter and that providing the same service to everyone will achieve a good result. But cultural blindness does not provide equal outcomes, Knibb-Lamouche said, as shown repeatedly in indigenous communities. Cultural Competence, Cultural Safety, and Cultural Humility Knibb-Lamouche described cultural pre-competence and cross-cultural care as the recognition by a service provider that culture has an effect on health and does matter. This recognition enables the provision of services in ways that are not as damaging as in the past. Further along the spectrum, cultural competence describes a situation in which services are provided in ways that are as congruent as possible with the culture of the client being served. The ultimate goal of the provision of health care services is cultural safety, said Knibb-Lamouche. In this situation, the services provided stem from and are based in the culture of the individuals seeking the services. Ideally, such care is delivered in the patient’s language, in the patient’s com- munity, and in ways that respect the patient’s traditional practices. Cultural humility denotes recognition by service providers of the com- mon disconnect between patients and providers and of the need to drive their care toward cultural safety. As Knibb-Lamouche described it, cultural humility could serve as a codicil on the Hippocratic Oath: “Instead of ‘First, do no harm,’ it would be ‘First, stop being a jerk.’” Cultural Continuity The idea of cultural continuity does not entail a rejection of new things, insisted Knibb-Lamouche. It does not mean that Native peoples should go back to living on the prairies and hunting buffalo. Rather, it means that cultures have evolved over time and that the people living in those cultures have the agency and self-governing ability both to change and to adopt new practices. If a Native American community decides that it needs an MRI (magnetic resonance imaging) machine, that decision does not contravene its traditions. Rather, it means that the community has decided to use avail- able resources to provide a new service to its people. Cultural continuity also reinforces the idea of the broader determinants of health, Knibb-Lamouche said. For example, Native communities have highly disparate rates of suicide, from almost zero in some communities to calamitous rates in other communities. According to research by Chandler and Lalonde (1998), the communities with the lowest suicide rates had the most self-determination and the most control over the social and cultural

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CULTURE AS A SOCIAL DETERMINANT OF HEALTH 9 institutions within their communities. “Even if they were poorer, they still had better outcomes with respect to suicide rates,” he noted. The Relationship to the Land Native Americans have a fundamentally different relationship with their land and territories than do other minority groups in Canada and the United States, said Knibb-Lamouche. The dispossession of land and the expropriation of resources destroyed traditional economies and under- mined identity, spirituality, language, and culture. The loss of land and self- determination through missionization, residential and industrial schools, and the destruction of indigenous forms of governance also resulted in the breakdown of traditional and healthy patterns of individual, family, and community life. These things may seem to have nothing to do with health, but to improve health they need to be confronted, Knibb-Lamouche argued. Research Research plans should be developed in conjunction with the com- munities being researched. This seems “blindingly obvious,” said Knibb- Lamouche, but researchers need to be constantly reminded. Researchers can have the best of intentions and promise many beneficial outcomes. But if the community does not see value in the research, it will not be helpful. Furthermore, if research does not have an ethical framework of respect for its subjects or participants, it will be inherently damaging. Researchers may equate ethics with morality, but Nazi researchers followed a strict ethi- cal code, yet were morally bankrupt, Knibb-Lamouche pointed out. “Ethics is not necessarily good,” he said. To improve the health of indigenous peoples, research should reflect community needs, priorities, and realities. Methodologies should be cultur- ally appropriate. Research designs should be credible and of high quality. And the research process itself should be open and inclusive. Anonymity may not be an important goal for community members, and simply provid- ing anonymity may not be protect research participants. If research does not meet these criteria, it can damage the relationship between the community and the researcher—as well as all researchers who follow. Recommendations in the Commissioned Paper Knibb-Lamouche briefly mentioned several of the recommendations he made at greater length in his commissioned paper (see Appendix A). His recommendations are not comprehensive, he emphasized, but they provide

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10 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES basic ideas for how an acknowledgement of the broader determinants of health can improve health. First, healing, which is a concept central to indigenous cultures, should be distinguished from treatment. For many indigenous peoples, healing includes the process of active recovery from colonization. Communities themselves need to heal from the things that have happened to them in the past. Healing requires traditional practices, spiritual values, indigenous knowledge, and culture and, importantly, depends on the idea that the health and well-being of individuals, families, communities, and nations require the restoration of balance. Second, the training of health care providers should emphasize cultural competence in the short term. In the long term, all of the health care pro- fessionals currently working in Native American communities should be mentoring the young people living in those communities so that these youth can be recruited to become health care providers in the future. Third, students who are considering careers working with Native American communities should recognize the historical context of those communities. “If you are going into Lakota territory, you need to know about the history of the Lakota and their battles with the American gov- ernment and the current issues around the Black Hills.2 Those things will impact on your delivery of the services to an individual,” he said. First Nation colleges in Canada and tribal colleges in the United States have the capacity to provide this training and to develop active relationships and partnerships. As an example of this third recommendation in action, Knibb-Lamouche mentioned a program led by the Indigenous Physicians Associations of Can- ada to develop a medical elective course on aboriginal health and healing. In the pilot of the program, second- to fourth-year medical students worked for 3 weeks in Native communities with elders and healers and participated in traditional cultural events. “It is not the solution, but it is the first step in building those relationships with various medical schools,” he explained. 2  Although the Great Sioux Reservation created by the federal government in 1868 included the Black Hills, the discovery of gold in the Black Hills in the mid-1870s led the federal gov- ernment to retake the land following the Battle of the Little Bighorn. The federal government offered to purchase the land from the Sioux, but the tribe refused because it is considered to be sacred ground. In spite of this refusal, Congress passed legislation in 1877 that created a new treaty allowing the purchase of the land for a fraction of its value. The Sioux have never accepted the validity of the purchase; this led to a number of court cases that eventually required the federal government to pay the 1877 estimated value of the Black Hills territory. The Sioux want the land returned to them. The issue is still unresolved; the federal settlement money remains in an interest-bearing account.

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CULTURE AS A SOCIAL DETERMINANT OF HEALTH 11 Discussion In the discussion session following Knibb-Lamouche’s talk, roundtable chair William Vega, director of the Edward R. Roybal Institute on Aging in the School of Social Work at the University of Southern California, asked about incorporating cultural competency into both health care delivery and research, despite the lack of research on how to do so or on the effects of doing so. The key to both delivering care and doing research, Knibb- Lamouche responded, is collaboration. The members of a particular group are experts on delivering care to that group, so they need to be part of the conversation. When researching cancer care in Native American communi- ties, for example, Native Americans should be on the research board, part of policy development, and represented in the research engagement arm of an institution. In response to a question from roundtable member Winston Wong, medical director for community benefit at Kaiser Permanente, about how technology can be used in a culturally appropriate way to extend the heal- ing relationship to indigenous communities, Knibb-Lamouche observed that culture is not technology. Although the stereotype may be that older people are isolated from technology, some of the elders in his community are “text demons,” he said. If the medical arena could build the proper relation- ships, technology could provide an excellent opportunity to improve things like compliance with medicine schedules or follow-up visits. Similarly, the use of Facebook could enable the medical community to engage with the young people in a community, which is especially important because Native American and First Nation communities are overwhelmingly young com- pared with the U.S. population as a whole; according to the Census Bureau, 30 percent of this population is younger than 18 years, as compared to 24 percent of the population as a whole. Language is also important in preserving culture and using culture to improve health. Knibb-Lamouche’s college is working on a medical dic- tionary in the Cree language to explain medical information to the elders, which “would increase their compliance with interventions exponentially.” Leilani Siaki, a cardiology nurse at Madigan Army Hospital, called attention to the difficulties of getting institutional review boards to approve research using methods appropriate for the Native American groups being studied. She had to bring a cultural broker in to talk with the institutional review board to get her research plan approved. Linda Burhansstipanov, president and grants director of the Native American Cancer Research Corporation, who spoke later in the workshop, described a survey of technology use among Northern and Southern Plains American Indians that showed that the major reason elders use technology

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12 LEVERAGING CULTURE TO ADDRESS HEALTH INEQUALITIES is to communicate with their children and grandchildren. Overall, she said, a large number of Native Americans are using technology. In response to a question about cultural safety, Knibb-Lamouche pointed out that a system will never be able to match itself precisely to what a client is seeking. For example, a Native American hospital in Seattle will have different understandings of treatments or interactions among people than a Cree hospital. Culturally safe care would incorporate indigenous knowledge not by subsuming it into Western knowledge but by acknowl- edging that traditional methods are available in conjunction with Western medicine. Culturally safe care is “a moving target that we can always be striving toward.” Cultural humility could serve as a codicil on the Hippocratic Oath: “Instead of ‘First, do no harm,’ it would be ‘First, stop being a jerk.’” —James Knibb-Lamouche